Cats

I love my cats. I have had cats most of my life – and they are MY cats. They come to me for food, cuddles and sleep on my bed. Or they all did until now.

My last cat Robbie became ill while I was in hospital in January 2020. He was taken to the vet by my husband where they found a significantly enlarged spleen. He had an ultrasound, then surgery but crashed on the operating table. They resucitated him. My husband came to pick me up from hospital where they tried hard to speed up my discharge so I could get to the vet, but he crashed again and died just before we got there. When he was brought out to me he was still warm and soft and my cuddly Robs.

I lasted a few weeks – Buddhists believe the spirit is still around for 7 weeks and I didn’t want my Robs to think I was replacing him so soon. But my house is not a home without a cat and I lasted 2 weeks. I chose a local cat rescue because I was aware of them through a friend who got her cat from there. They rescue cats and their kittens mostly though capture in the wild. I chose two male tabbies – as my Robs had been – who were just 9 months old. They were not brothers but Freddie had attached himself to George at the rescue home. The very caring rescue centre owner brought them to me at home. We filled in detailed questionnaires and contracts and I think she was surprised when I said I would take them – for this to be their forever home. I certainly wasn’t going to have them brought here then turn them away. Besides, I had already decided and checked with the rest of the family that it was ok to take two together.

At first they were understandably nervous and his in a play tunnel together. Weakest them in the living room with food, water and a litter tray so they could get used to people and the house gradually. Unfortunately, three days after their arrival I was back in hospital. I received photos of the boys but Spending big chunks of 2020 in hospital or unwell meany they did not see much of me. There was the added difficulty that, when I was home I could not get into the utility room – their feeding room – in my wheelchair so feeding was left to others. The natural consequence of all that means that my adored cats do not come to me except when bribed with treats. George particularly has attached himself elsewhere. Fred is attached to nobody other than George and follows his lead. He enjoys tummy strokes on his own terms and both occasionally sleep on my bed – but only because mine is the only door left open for them overnight. My previous cats were not allowed out at night but we had recently had a cat flap fitted for Robbie and these two were allowed out whenever they wanted while I was in hospital, so now spend a great deal of time outside.

So now, three years later, and for the first time ever I have cats living in my home that are not attached to me. I don’t get cuddles and I have their whole lifetimes to have cats who are not ‘mine’ even though for some time now I feed them and bribe them with treats. George especially will come to me for treats then go and sleep on someone else’s lap. I am not needed or able to turn around their affections for others and that saddens me greatly.

This is not I know a blog about arthritis, hip replacements etc. but is a grieving part of me – one of the many impacts and consequences of the catastrophic destruction of my leg and hip from metal on metal hip resurfacings – and the saga still continues 9 years after having both my hips replaced by Birmingham hip resurfacing.

A grand afternoon out

I made it up Neamour again. It is hard work but worth it to get there. It sounds as though I’m climbing mountains, although it does feel like that to me. I was really struggling with my neck, shoulders, arms and hands. I have osteoarthritis and trapped nerves so pushing a wheelchair, and my entire body weight, with only my upper body strength is very hard work at the best of times. I gave in and took a Tramadol – not something to be done lightly – which worked its magic (which is why it is not to be taken lightly) and decided it was a beautiful afternoon and I was going to see just how much I could manage.

It is not really a consideration unless you are walking with crutches, sticks or in a wheelchair, but uneven pavements, roads, pot holes – and especially the bits that have been cut across by workmen and then filled in, can be really tricksy things to manoeuvre around or over and getting over the ‘ditch’ that runs across the bottom of Neamour Lane is almost harder than pushing up it. It is particularly bad coming down because if I hit that at any speed at all I’ll be, somewhat painfully, out of my chair. Following the snow, there are also a lot of stones and gravel that can bring just one castor to a complete stop or a skid.

However, it was a lovely afternoon. It was a beautiful early spring day – cool, slightly breezy (it’s always breezy up here!) and the sun was shining. Birds were singing and the air was clear with beautiful views already over the north Pennines. I set off – counting as usual and thinking I was probably never going to make it as far as the first garage and farm gate (200 pushes) – I did. 200 pushes more and I was at the first farmhouse and I was starting to glimpse Grassholme Reservoir when I turned back to admire the view – otherwise known as a rest while the burn in my arms disseminated. By this point I had already had to pull across for a quad bike (expected), a delivery van (twice – unexpected) and a car. It was a busy afternoon for a hill which is a dead end onto moorland.

That was when I heard, then saw, the lapwings flying above and over me. There must have been a dozen birds sweeping and hallooing around me as I sat as still as possible watching them, seemingly playing some game I couldn’t understand. While I sat there I could also hear, but could not see, a curlew close by. The sheep stood placidly munching in the field obviously so used to this behaviour that they took no notice. A helicopter flew low and slow nearby.

I pushed on until the lapwings were soaring and calling below me and I was watching the smoke lazily curl from the chimney of the house two-thirds of the way up the hill. The breeze was cooling and welcome. This is the hardest and steepest part of the climb, but the gate seems so close it is hardly worth giving up. It is so steep that I am pleased to have stabilisers out at the back of my chair to stop me tipping over backwards. That would rather spoil the afternoon!

At the top the view is tremendous. I can see the long line of the north Pennines from Cross Fell. There are reservoirs and moorland. Farms dotted around. The line of the quietly flowing Tees, which becomes a much bigger river further east. Occasional cars cannot be heard but are seen like small toys pushing along the line of a road. The feeling is of reaching a mountaintop and surveying the view for miles around. It is hard to choose to set off back down.

And away ………

Well – I did it! I managed the hill climb to the gate at the top! I can’t remember how many breaks I needed. I counted my pushes all the way up (1712) and some of them admittedly were only about 1/6th rotation, but I got there. It took me about 1 1/4 hours to do something a walking person could do in about 15 minutes, so I’m going to need quite a head start for the summer picnic my friend has suggested we take up there. She is my inspiration for this. When she was recovering from leukaemia she would firstly be pushed up the hill by her husband and it became almost a spiritual thing for her to reach the top and touch the gate – and which she eventually did, walking, and now does it every day. I think it might be some time until I can do it daily! My arms and shoulders get so painful but I am determined to keep going. I didn’t want to come down because that means I have to do it all over again :-D. Coming down is much quicker – and yes I know that is obvious – but also a bit scary heading down a long steep slope in a wheelchair with no easy way of stopping. Brakes are ski-like 90 degree turns – hopefully not into a ditch – and my gloved hands, which are quickly wearing away (the gloves not my hands, though who knows!). Gravel and stones, I have found, are not my friends!

I also took myself into our nearest market town to visit the optician on my own, dismantling my chair and driving in. I couldn’t park where I wanted to, and someone else took the disabled spot outside the opticians – I was pleased to see they were elderly, though as the mum of a person with non-obvious disabilities I hope I’m not one to judge. Plan C, was the long stay car park. Not having any money, I realised as I drove into a parking place, I had to drive to a meter to check the sign and find, as a blue badge holder, I didn’t have to pay. I drove back to the parking spot, re-mantled my wheelchair and headed off – all down hill and squeezed past scaffolding with just enough room between it and the road kerbside for me. I got to opposite the opticians – town steps down to the road! So off uphill I went to find a dropped kerb. There was no crossing there but a lovely lady stopped her car, and the following traffic, so I could cross. Back downhill and up the ramp the opticians put at the door for me to get inside. All was well.

So, being a right clever clogs now, I thought I would go up the street to see where I could get access (hardly anywhere), cross the road at the top and come down the other side – hoping to find an alleyway through to the car park that I could access (no chance!). Having established that I had no cash though, I decided to visit the bank. I couldn’t reach the cash machine outside, so I went up the ramp, into the bank, up in the little disabled lift – and sat for an age as the single customer chatted to the clerk, at the single operating and only wheelchair height till. I eventually got there to be told I couldn’t get cash over the till – I needed to use the cashpoint machine outside. I can’t reach the cashpoint machine outside! The clerk asked another staff member if she could meet me outside and do it for me – which she did. Could I put in my PIN? No – I can’t reach the cashpoint machine! Anyway, we got there in the end as she did it for me. Places I could access on the way back down the street? Only the bank – and I couldn’t reach the cash machine.

The downside of coming down a hill I find, is having to go back up it. It was a hard slog back to the car park and the car. I kept reminding myself that I had got up the hill behind my house – if I can do that then I can do this. Going back past the scaffolding uphill was an interesting challenge. Task almost complete!

I had put my new and rather heavy new VAC pump in my backpack on the back of my chair. The old one (and silent one!) sat neatly in a bag hanging behind my foot rest. Not this one – we’re still trying to find something that works. Apparently it is not the backpack! I got in a right muddle with it and the handlebars it hangs over. A man, who was using the remaining disabled car parking spaces to do some skipping – yes really! – came to untangle me. He was absolutely spot on in his responses – he appreciated I was probably independent but did I want any help? I said I probably really needed to do it myself, but he was just over ‘there’ if I needed anything. I managed to dismantle my chair – again – to get it back into the car. Wheels off and behind the driving seat, cushion off and between the wheels and the seat to hold the wheels in place, fold the back down on the chair, secure it with a bungee to the footrest, turn in the stabilisers (these stop me falling over backwards a slope!), turn the chair and heave it up onto the seat. Thank goodness for sliding doors as most of this is done sitting sideways on the driving seat. Bear in mind too that my new VAC pump does not fit neatly into the door pocket as my old one did and so gets tangled, pulled and generally in the way – thank you S&N – not my favourite brand in the first place thanks to my rubbish hip replacements. Anyway, the lovely skipping man told me he thought I was amazing! That has kept my spirits up for days 🙂

I was certainly ready for my coffee when I got home – having driven there and re-mantled my chair again to get in the house. Just as well as I couldn’t have got coffee on my own in BC. To be fair, it is an old market town with old buildings and I love it – I wouldn’t have my home anywhere else. At least I happen to know a place I get great coffee, brilliant vegan food, accessible toilets and good company – all in one place. It’s called Home!

Aiming High

Up to the new year I really didn’t feel well. It’s been a long time trying to heal this wound. There has been great progress and it is so much smaller (‘shark bite’ huge open wound start – big enough to see I have no hip!) now about 12 cm long, 2.5cm wide but still about 5 cm deep and progress now seems very slow. However, I managed to get off Tramadol again, and Sertraline before Christmas. Between those and the healing I was too tired to do anything other than eat and sleep.

Of course, eating and sleeping leads to even extra weight gain which was also making me feel miserable. Winter doesn’t help. It always makes me feel low. I’m not sure which of these, or even if all these things gave me the push to do something to help myself. I also had a telephone consultation with my surgeon early in January and we are talking again about an appointment with the plastic surgeon to look towards getting me off this (increasingly frustrating) VAC negative pressure dressing and pump and closing the wound. That will certainly make moving around easier. I will also be able to go swimming again.

That could be quite some months ago yet though. My consultant appointment isn’t until April! In the meantime, I have put myself on a restrictive calorie die and so far, lost 4kg. That is often, sadly, where I get to and then put that and more back on. I have added apps to my phone and joined a group to try to keep myself motivated. 

Two other things I have started too. I can now get my wheelchair dismantled and re assembled and into the car. This means that for the past four or five weeks I have driven myself (yes all by myself for the first time in 7 years) to my Mum’s (about 17 miles over the moors), up to a local café for lunch, back to Mum’s then home again – getting my wheelchair apart and together again at least twice if not three times. For a light wheelchair it is still very heavy to pick up and lift into the back seat of my car and out again – bearing in mind that while I do this I am balancing on one leg.

The other thing is hill climb. I started going right out of my house to the end of the village (not far but an uphill push home). Then I thought I would try the hill out the back of my house. Bear in mind that not so long ago I couldn’t push myself up the slope to our house (>1:20). Neamour Lane is easily this steep in parts with some slightly flatter parts too. The First time I tried it I got to the caravan (about 1/3 of the way up). The next four times I got to Middle Neamour (about 2/3rds) and yesterday I got about halfway between Middle Neamour and the hill top). The aim is to get to the summit, pushing myself in my wheelchair. It is hard and strenuous work trying to push with your arms. There is nowhere near the strength you have in your legs for walking, with those major muscle groups available. I will get to the top. It may be 20 pushes at a time in the end, but I will get there eventually.

So, lots of new things, diet, exercise, independence, staying awake! I have so many things in my head that I want to do that I don’t know where to start – tapestry, embroidery, crochet, knitting, beading, quilt making, re learning to play the piano – it all becomes a bit overwhelming, but for so long I haven’t had the energy to even do these things. I also hope that I may find a way to make some money doing something I enjoy. I don’t know if I will ever be able to go back to counselling – things have been too traumatic still for me to manage that, and certainly not teaching, but that doesn’t mean I can’t find something new. 

So, I am aiming high again, both literally, physically and psychologically. Some days I still have setbacks and it really doesn’t take much to pull me down. But there are some very bright times now too, lots of possibilities. Bright stars, blue skies and rainbows and spring is on the way.

Lazy Days

Sometimes I feel that I’m lazy. I feel guilty and that I should (!!) be doing something – watching my husband and parents-in-law working in the garden for example. The ‘should’ has not escaped me and the fact that I cannot get up into the garden anyway. I manage some days to fix jewellery, make face masks, felt animals etc. and others it is as much as I can do just to get through the tasks of daily living. Even then it is usually with some assistance.

I wonder if I have always just been a lazy person and so I have done some thinking back. When I was a child I would walk miles by myself. If I was at home I would always be doing something. As a teenager it was usually letter writing, reading or homework. 

Then I trained to be a nurse, and a midwife – the old-fashioned way – full-time on the wards and shifts. 

When I had my son I worked part-time as a midwife. When I was off he and I would go to parent and toddler group, soft play, parks and farms or have some activity going on at home. Once he was at school I had more time and, after dropping him off, I would decorate the house, dig the garden – including a seating area out of a slope, carry tons of gravel, sand and soil down 14 steps at the front of the house and the same again at the back. I painted his bedroom once in blue, then painted clouds over the blue paint, covered his ceiling with dark blue fabric and added planets and stars. Every year I made his birthday cake and modelled different ideas for each year. One year was Peter Rabbit in a vegetable garden and another year was teddy bears sitting around a table at a party.

Every September I would make sweet mincemeat and then mince pies, and Christmas puddings. Once my son was home we would do reading and his homework. It was always well researched. He had at least one story told to him every day and we would thoroughly examine the pictures in the book too.

When he was 5 years old I left my midwifery job and went to university to study psychology. I would either drop my son at school or have to leave him with my mum while I drove an hour to uni, did lectures and research, then drove an hour home again. I followed this with a degree in teaching – an extra two years, then worked full-time as a teacher. Being a teacher is as much a vocation as nursing and midwifery, maybe even more so as, whatever people think they know about teacher’s working hours, you are never off duty, or on holiday. It did however help me with insight and therefore guidance in getting the best education I could for my autistic son.

When my dad died we moved my mum from the family home to a bungalow. Having decorated that and moved her in I then spent each day stripping and re decorating the old house. What a step back in time that was as each layer of paint and paper came off! I was doing supply teaching at the time so could pick my working days. We then did the carrying soil, gravel etc up the same number of steps front and back on a sloping site to redesign that garden too. I went back to college and did a degree in counselling. The aim was to eventually be able to work at home so I was more available for my son, who needs significant supervision and support.

We moved house again and I spent my days dropping my son at college, moving boxes and furniture by myself, working on re-building my counselling business and doing an online course. I had finally found a way to work from home. Later I bought into the business with which I had done my post grad diploma, with some colleagues/friends and ran this business alongside my private practice and sitting on the board of a professional body. 

When I had my hips replaced, I would drop my son at college, go to the gym or swim then go home to work before picking him up again. As vegetarians we have always cooked meals from scratch. There would also be housework to deal with. My husband worked long hours and had a long drive to and from work.

Everything fell apart when my left hip did. Since then I have had 28 surgeries with general anaesthesia on that hip alone. I don’t count the procedures that I didn’t have GA with. Everything there has become progressively worse until now I am wheelchair dependent. I like to try to do things myself, though sometimes it is just not possible or safe. I try to do things that are hard work, like feed my cats so that they come to me, even though much or it is bending and standing on my only decent leg – which also has a failing hip. Virtually every task I can think of requires someone else to set it up or do it for me. I am slow to manage things in a wheelchair. Losing the use of your legs also ensures you lose the use of your arms as you wheel yourself around. It is hard work pushing your own body weight around. Oh and I still have a huge hole in my leg which continues fortunately to continues to heal ever so slowly but in the right direction.

It is still hard not to feel guilty, or in the way, or lazy but perhaps this is not the way I am but the way I feel. I need to be kinder to myself and remember things are different now.

Scars

Driving over the moorland by my home the other day I looked out of the car window to see the rise and fall of the moors of the north Pennines. There are deep scars and ravines – a result of long past glaciation and craters from the quarrying and mining industry. Patches of heather are separated to prevent fire spreading over the entire area when it is burned annually to encourage the regrowth of young shoots desired by grouse which in turn become the valuable sport of the ‘Guns’. Yet the area is beautiful in sunshine and in rain. It occurred to me, why do we see this beauty in a wild environment? We see the trauma caused to the earth by man, wind, water, and fire yet we view it as picturesque. We see the strength in its longevity of suffering and ability to withstand the damage.

Yet apply those same principles to us. We observe our own mutilations, both physical and psychological. Rarely do we feel attractiveness – we try to cover up and cringe when we see the mirror or photograph showing the disfigurements. We feel ourselves exposed and judged negatively by others – as we judge ourselves. We do not feel the power of our ordeals and the bravery exposed by our resilience in the face of adversity.

I know I seek reassurance for love and acceptance by others, despite knowing that external approval is only a small part of the story. Love and acceptance should come from within. While I know this it still feels selfish and self-centred. It should be that all the love I have for others should also include me. Therefore, I should be able to accept myself as I am. As Gloria Gaynor sang:

“I am what I am
I am my own special creation
So come take a look
Give me the hook or the ovation
It’s my world that I want to have a little pride in
My world, and it’s not a place I have to hide in
Life’s not worth a damn till you can say
“I am what I am””

Ok – yes my scars are ugly. I have a cavity in my left leg where bone, joint, tissue and muscle have broken down and had to be removed. My left leg is shorter than my right and I have had numerous bacterial infections in there, some of which would have killed me if not for fabulous doctors in the NHS. I have an open wound which has gradually moved from ‘shark bite’ to ‘crater’ and as it heals it will become a smaller crater in the bigger crevice. But I am still me. I am still the person who dearly loves my husband, my son, my family and friends, my cats J.

Some days it is hard not to have regrets. To feel frustration. To wish things had been different. Different choices made. But it is what it is. I will never have compensation for the damage done to me by MoM hips. But there is little point in feeling any resentment. The only person that will hurt is me. So, I choose to be proud of my scars. They are the result of many, many surgeries and there are still more to come. There has been much pain and fear. I have had major trauma. I am apparently one in a million – I have had the worst outcomes of the worst outcomes that could possibly happen. It has taught me patience and resilience. It has made me who I am now – and I hope that means strong, brave and able to accept myself – and maybe even love myself a little as I do the moorland with all its scars too.

The Long Road

There is a national shortage of blood bottles! Whether this is thanks to Covid-19, Brexit, lack of lorry/delivery drivers or some other madness this means that District Nurses, clinic and hospital staff are making great use of their degrees to count stock. Following my numerous infections, IV antibiotic therapy, anaemia, low iron counts and bizarre spikes in CRP (inflammatory blood markers) – I have been having blood taken weekly on Mondays so that Microbiology have the results for their Tuesday afternoon meeting. Yesterday, a senior DN spent her morning, at least, on the phone to people like me and other agencies trying to determine who was most in need for bloods. My bloods alone take up two tubes at least. Multiply that by the millions who need blood testing every day – that’s a lot of bottles.

Anyway, after some investigation, we discovered that my blood results have been stable for a reasonable length of time now. My Hb and iron levels are the best I’ve had in years and while my CRP wanders around a bit it does stay below 100 generally. I appreciate it should be under 10 but my reality is a little different to that. The agreement is that if I feel unwell – and I’ve been there a few times now – then they will come to check blood if I call them. Of course, if I feel that unwell it is usually a trip to the hospital instead. My point though, of course, is that blood results and my wound, of which we take a photograph at each dressing change – 72 hours ish, show admittedly slow but steady progress in the right direction.

Now I know life is about the journey and not the destination (Carl Rogers) but a destination is generally what we all have in mind and mine is getting my gigantic wound healed and being well. I gave up long ago on a nice shapely leg with minimal scarring, mobility (generally) and the ability to be independent. A few weeks ago, feeling there was little apparent progress with my wound and that it was a year since it was left open after surgery and a VAC dressing used to continually drain it – the idea being that cavities were forming, filling up with serous fluid and blood and becoming infected – we went back to look at the original photos. Oh yes – there is definitely progress. We’ve gone from ‘shark bite’ to ‘ditch’. It is still reasonably deep but while we continue to stop the wound healing over it can continue to heal up from the inside out. No longer can you see that there is no hip joint in there, and could pretty much put your head in the wound, but the little white wormy things that appear out of the crevice seem to be doing their stuff.

So while things are extremely slow going, they are going in the right direction, and I would certainly prefer that to the alternatives – even when I do get frustrated by the pump beeping, the tubing getting caught in my wheelchair brake, the slimy feeling before the dressing changes and being pretty much confined to home for this and a variety of related reasons. Small rocks in the path.

This morning I am on my own for the longest time in the past year, with orders to not ‘do anything stupid’. As if!

Trapped!

I am lying awake as many things occur to me. I realise that I no longer really want to go out.

Firstly arthritis, then autism, Covid and finally disability trap me inside. Perhaps there is no more beautiful place to be trapped than where I live. But then I can’t even go out to the garden without help.

I can’t do a complete job inside without assistance. I can’t wash or dress without some intervention. I feel like a child and that I am scolded like a child if I try to do something and fail, making more work for someone else. I feel their frustrations with me.

My husband is my carer now rather than my mate, my partner. He even does my dressings for me – his fingers in the hole in my leg every other day. It is getting smaller admittedly, but as he says – a year ago he could have put his head in the open wound, not just fingers.

My body gets bigger while I gradually try to reduce each meal and deny myself treats. I feel unattractive and with my useless leg now as it is, my skin, the hole in my leg, the lines coming out of me (Hickman and VAC), ever more degrading problems like incontinence, my body and rolls of fat I can no longer deny, I am unattractive.

I realise I am not just trapped inside a building. I am trapped inside me.

I try to be cheerful. Others marvel at our ability to accept and stay positive. If I didn’t deliberately find things to be grateful for, to meditate every day (including sleep!) and to accept what has happened to me I know the deep dark place I can find myself further trapped inside my mind.

I start to understand how things are and have been for my mother, my son and others who find themselves trapped behind their medical conditions. I sleep to hide, to be alone, to be the person I used to be and to avoid the frustration that everyone else can do the things I used to do and enjoy.

I am blessed to live in a beautiful place I love, have wanted to live for so many years, and can look across moorland and fells that I would love to walk and explore, as we used to when we were younger – with lovely neighbours, and my father in law, who can go off and walk them still.

I have found I cannot get myself around our steep local market town, and even with help cannot get into the shops I would like to visit – multiple steps, narrow doors and packed displays with no space for a wheelchair. I can’t get myself around even our local little town. I can’t (yet) get my wheelchair in and out of the car myself – I am not yet strong enough to lift it in.

My friend suggests that, if my husband puts the chair into the car then she will get it out for me if I want us to go out for coffee together. She realises that I don’t get time on my own and that I open up more and speak about myself when alone. However, I guess I fear driving anywhere on my own. I haven’t done it for such a long time. Last time I pulled over after a few minutes and asked my husband to take over. I felt I’d already made too many mistakes. He also was concerned about my mistakes!

However, “When life gives you a hundred reasons to cry, show life you have a thousand reasons to smile.” Laura Miller. I don’t know who she is but she is correct. 

I wonder if this is my ‘waiting time’ – to now have to explore that inner self I can’t escape.

Hippy Notes part 7 2021

Monday 4^th January 2021

DN back today to do dressing after G managed over Christmas and New Year. We can see progress, which is good, though there is still a lot of exudate and fatty globules blocking up the dressing. CRP over the past few weeks ranges between 80 and 140. Hb is going up slowly and is now 10. I should have had an MRI on Saturday but we had heavy snow. It is rescheduled for Saturday this week.

Saturday 9^th January 2021

JCUH MRI this afternoon. 

Wednesday 13^th January 2021

Phone call from SOCS2. MRI results showed no cavities forming – yippee! He is happy with the way things are progressing from the photographs. Hb is 10 and CRP is around 100. I am also going to be taking my own blood from the Hickman on Mondays and G take it to the surgery to free up staff for Covid vaccines. We have a bathroom and also three downstairs cupboards full of IV, blood taking, dressings, Vac dressings and canisters.

Wednesday 27^th January

HB 10. CRP 51. All going well. Wound looks gunky when changing – don’t know where all these bits are coming from – but is continuing to heal.

Had my first Covid vaccine today – Oxford – done by DNs at home. It looks like I must be on a vulnerable list!

Tuesday 9^th February

G doing my dressing every two days is working fine. Bloods seem to be an issue though. I take it but it is refused – turns out we should have it to the surgery by 13:00 for it to be certain to go on the van.

Monday 8^th March

Saw SOCS2 at JCUH. My wound is healing well and much smaller. It is clean and the fluid lost has reduced dramatically. There is occasional blood caused by moving around but little else. We have kept SOCS2 and the DNs up to date with photos while we have not been seeing them – especially as tissue viability told them I shouldn’t be on the VAC now and asked for it back! I can stop antibiotics though. I had 3 weeks supply and had thought to finish the course – although after 6 months it is not really a course and Consultant Microbiologist thought it time to end. As I feel sick every night because of them I decided to stop now. They are well in date (until next spring) so will cover me if my hip becomes infected again, but we might as well find out if that is going to happen now. I wrote to everyone concerned, including the GP, and they all agreed on this course of action.

I am alarmed at how clicky I can feel my right hip becoming. While not painful as such my right knee creaks badly now when I try to stand.

Monday 19^th April

Saw SOCS2 and Mr … Plastic Surgeon2 at JCUH. The intention was to consider how my wound could be closed and if this should or could be done by PS2. They agreed I certainly had enough skin that could be taken to close it (charming!). My wound is still c 15cms long and 4 cms wide. We don’t know the depth but it is improving greatly. However, I have very excoriated skin around my wound which is both painful and itchy. PS’s suggestion was to change the sponge in the wound for sterile swabs and the Atrauman for Mepitel. He also Rx a cream for my skin – Tera- Cortril. He also said that, despite the skin turning over into the wound now, that it could heal though would leave a crepitus. Having a smaller ditch inside the larger one hardly matters now, but he said he could revise it as necessary. I would prefer to have no further surgery!

Monday 17^th May

We carry on as usual. G changes my dressing every other day. It is far too soggy and slimy to go three days. The Tera-Cortril cream is amazing and has almost cleared my sore skin. It is still very, very dry and itchy but putting any moisturising cream on it slides under the dressing film, lifts it and releases the negative VAC pressure. We were changing canisters every two days but two weeks to a week ago I felt rather unwell and slept even more than usual. We went back to changing canisters every day. There are still regular build ups of blood in my anterior muscle and roughly every week we have a bleed into the canister. 

I have had weekly blood tests and my results have been stable. My CRP is perhaps very high for normal (50s – 80s) but fairly settled and my Hb lower end of normal for the first time I can remember for a long time. SN at Friarage suggested changing to blood tests every two weeks or even monthly. However, last Monday blood was taken. On Tuesday SN phoned to ask how I was. My CRP was 219. I went to Friarage on Wednesday and she took further blood for CRP and also for cultures. My CRP was down to 87, which is bizarre. I hope to hear if the blood cultures grew anything sometime soon.

CRP is an marker of inflammation, including infection – which has always been the case for me. However, while I was unwell, it is all very strange, so I began to do some investigation. I searched for information on CRP:

NHS site – “C-reactive protein (CRP) is the most useful marker of the acute phase response. It rises within hours of the inflammatory stimulus and has a half life of about 8 hours, thus making it a useful marker for both diagnosis and monitoring. Raised levels can be found in chronic active inflammatory disorders, microbial infection and following surgery.

In most normal individuals, CRP is an acute-phase protein that is present in serum and plasma in very low concentrations. CRP concentrations become elevated in response to many pathological conditions, including infection, tissue injury, response to surgery, inflammatory disorders, and associated diseases.

Increases in CRP values are non-specific for many disease processes and should not be interpreted without a complete clinical evaluation.

Although elevated serum CRP levels are a non-specific response, serial measurement of CRP levels can be a valuable aid to diagnosis and management of the specific condition causing the elevation.”

Range should be 0 – 5 mg/L

Associated diseases are: 

• Rheumatoid arthritis
• Rheumatic fever
• Cancer
• Tuberculosis
• Pneumococcal pneumonia
• Myocardial infarction
• SLE (Lupus, technically known as systemic lupus erythematosus)
• Connective tissue disease
• Bacterial, viral, fungal, or parasitic infection
• Other causes of ongoing inflammation

Rheumatoid Arthritis had recently been mentioned to mum in relation to her hands. We also read that CRP may be raised in Fibromyalgia – though I cannot now find that source. So I did further research, firstly into Fibromyalgia. My niece has been recently diagnosed. I had wondered for many years if I had this too, though previous years I had wondered about ME/CFS, as dad had this. When I was diagnosed with autism I thought perhaps that covered the sleepy duvet days I sometimes needed.

Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

Symptoms of fibromyalgia

As well as widespread pain, people with fibromyalgia may also have:

• increased sensitivity to pain
• extreme tiredness (fatigue)
• muscle stiffness
• difficulty sleeping
• problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration
• headaches
• irritable bowel syndrome (IBS), a digestive condition that causes stomach pain and bloating

This perhaps covers some symptoms but does not mention any likelihood of inflammation that would raise CRP significantly.

The main symptom of CFS/ME is feeling extremely tired and generally unwell. 

In addition, people with CFS/ME may have other symptoms, including:

• sleep problems
• muscle or joint pain
• headaches
• a sore throat or sore glands that are not swollen
• problems thinking, remembering or concentrating
• flu-like symptoms
• feeling dizzy or sick
• fast or irregular heartbeats (heart palpitations)

Most people find overexercising makes their symptoms worse. 

The severity of symptoms can vary from day to day, or even within a day.

The symptoms of CFS/ME are similar to the symptoms of some other illnesses, so it’s important to see a GP to get a correct diagnosis.

Due to the similarity in name, I looked up Polymyalgia as mum had this some years ago and knows a few people now who are struggling with this.

 

Symptoms of polymyalgia rheumatica

The main symptom is muscle stiffness in the morning that lasts longer than 45 minutes.

Other symptoms may include:

• extreme tiredness
• loss of appetite
• weight loss
• depression

See a GP if you have pain and stiffness for more than a week. They’ll try to find out what’s causing it.

Diagnosing polymyalgia rheumatica can be difficult because the symptoms are similar to those of many other conditions, including rheumatoid arthritis.

These conditions will need to be ruled out before polymyalgia rheumatica is diagnosed.

Causes of polymyalgia rheumatica

The cause of polymyalgia rheumatica is unknown, but a combination of genetic and environmental factors is thought to be responsible.

Polymyalgia rheumatica is an age-related condition. Most people diagnosed with it are over 70, and it’s very rare in people younger than 50. It’s also more common in women than men.

It’s estimated 1 in every 1,200 people in the UK develop the condition every year.

This still does not help a great deal but led me to look up Rheumatoid Arthrits. Mum and I both have Osteo Arthritis but it seems my grandad had RA.

Rheumatoid arthritis is a long-term condition that causes pain, swelling and stiffness in the joints. The condition usually affects the hands, feet and wrists.

There may be periods where symptoms become worse, known as flare-ups or flares.

A flare can be difficult to predict, but with treatment it’s possible to decrease the number of flares and minimise or prevent long-term damage to the joints.

Some people with rheumatoid arthritis also experience problems in other parts of the body, or more general symptoms such as tiredness and weight loss.

Other diseases that may present similarly include systemic lupus erythematosus, psoriatic arthritis, and fibromyalgia among others.

The information about flare ups and also similar presentations suggests some great difficulty in diagnosing any culprit of my raised CRP if there is no infection. My wound is clean despite my occasionally feeling unwell.

Lupus: 

• joint and muscle pain
• extreme tiredness that will not go away no matter how much you rest
• rashes – often over the nose and cheeks

These are the main symptoms of lupus.

You might also have:

• headaches
• mouth sores
• high temperature
• hair loss
• sensitivity to light (causing rashes on uncovered skin)

All these things apply except the high temperature. G tells me that the redness on my cheeks he often sees and comments on are almost exactly like a photo of the butterfly effect seen on Wikipedia. I had this redness when my blood was taken and I felt very unwell last week. Apparently, my Aunt had Lupus.

I also noticed the possibilities of auto immune issues in many of these cases. Certainly my dad had this with ME and I remembered of course we lost our first baby because of Cytomegalovirus. I asked a GP many years ago about being tested for auto immunity, especially as my hypothyroidism is caused by immunity issues – as is S’s, diagnosed when he was very young. He refused because “it is very rare”!

Cytomegalovirus (CMV) is a common virus that is usually harmless. Sometimes it causes problems in babies if you get it during pregnancy (congenital CMV).

What is cytomegalovirus (CMV)?

CMV is related to the herpes virus that causes cold sores and chickenpox.

Once you have the virus, it stays in your body for the rest of your life.

Your immune system usually controls the virus and most people do not realise they have it.

But CMV can cause serious health problems in some babies who get the virus before birth, and in people who have a weakened immune system.

Symptoms of cytomegalovirus (CMV)

CMV does not usually cause symptoms.

Some people get flu-like symptoms the first time they get CMV, including:

• a high temperature
• aching muscles
• tiredness
• skin rash
• feeling sick
• sore throat
• swollen glands

It may be that this is the culprit, and if the blood cultures show nothing then I will mention these possibilities to SOCS2 and CM at Friarage.

In the meantime, I will write – and copy SOCS2 and CM in – because in his letter Mr … says I have had a Gall Stones Procedure!! I consequently had a written reply from …, although just a correction to my notes would have made me happy.

Thursday July 15^th

I’m not so good at keeping this diary up to date anymore. Probably because most days are the same and nothing much exciting happens, so I’ll do a summary of the past 6 weeks or so.

I continue to get haematomas more or less weekly. They build up in my anterior muscle and are immensely painful. Over the course of a day or so this will ease. A few days later blood will appear in my VAC and then the process will start again. Otherwise, the exudate tends to be orange and about 100mls a day. Much better but still too much to consider closing the wound. This has now gone from “shark bite” to ‘knife wound?’ – it is 14cm long, 3 cm wide and about 2 cm deep, although there is still a canyon of indeterminate depth – slightly worrying thing as we don’t know what could be brewing there but it does seem to be filling up. The area around the wound occasionally becomes excoriated from the film dressing, as does my chest from the film over my Hickman line – yes, I still have that too. G uses the terra-cortril cream, which seems to heal it and barrier spray usually helps my leg and bum, though not my chest. Probably the adhesive type is aggravated by it.

G keeps a data page on the number of hospital visits we’ve had since 2013, the number of nights I have spent in hospital, the cost of fuel and visiting (when able pre covid – I was not allowed visitors at all last year), the general cost of my being unwell, adaptations to our home for my, now, disability and the cost of not being able to work – we have between us lost the work from three training and consultancy businesses between us. This amounts to roughly 3.5 years in hospital, 3.6 lost working years, £660,000 in lost income and costs. This does not include the time at home for IV antibiotics, dressings, general care and assistance and days of hospital reviews, blood and iron transfusions, DN visits and research for better ways of making me as independent as possible. Those are scary numbers.

Strangely enough, G’s cousin came to visit last week. She has recently been nursing a patient who is also having the after-effects of a metal-on-metal hip and her bone, tissues and muscle turning to mush as a result.

Hippy Notes part 6 2020

Wednesday 8^th January 2020 Phone call from GP. Anaemia worsening but wants to see what SOCS2 suggests before intervening. Seen by SOCS2 in clinic. This morning. Wound still weeping (and bleeding) and clearly formed a sinus. Antibiotics to stop and surgery planned in two weeks to excise sinus and extra tissue, take deep wound samples (unmasked by antibiotics) and suture. MRI showed some but not extensive fluid build up and no pus sacs. To have IV iron next week to improve anaemic situation.

DNs still come daily to dress open wound and G does the night time change if necessary.

January 10^th 2020 SN phoned from Friarage. IV iron, bloods and pre op arranged there next Tuesday 14^th.

Tuesday 14^th January. Friarage for iron infusion, bloods and flush. May take 7 – 10 days for me to build the Haemaglobin to feel better. 

Monday 20th 2020 Starting to feel quite unwell and a sinus is starting on the scar above the current wound. It is red, hot to touch and hard. There is very definite swelling now. Phoned SOCS2’s secretary with photos. She assured me the plan was still to excise the area at the weekend and someone would be in touch on Friday.

Tuesday 21^st January 2020 DN took blood today with a butterfly needle. It was so painful – the hypersensitivity is obviously also back. My joints and muscles have been aching for about a week. Phoned SOCS2 secretary again to tell her I was unwell. SOCS2 asked for me to come into Ward .. tomorrow with a plan to stay in.

Wednesday 22^nd January 2020. Bed on Ward .. for me. SOCS2 is not here tomorrow but will see me Friday. Plan for surgery Friday or Saturday. DN phoned with my blood results from yesterday. CRP 37. Hb 11.

Thursday 23^rd January 2020 My leper status has caught up with me. I am being moved from Ward .. to a side room on Ward … My CRP is 103 and my white cell count 6+. On the bright side, my Hb is 13.

Saturday 25^th January 2020. Surgery 22. Theatre Mr …. There was no pus but inside was like a ‘snotty tissue with fluid on it’ :-D. Deep debridement, including into femur. Deep samples taken for microbiology. Several washouts. Excision of sinuses with an elliptical incision to draw tissue together and sew up. All seems successful. CRP <200. Blood transfusions x 3.

Sunday 26^th January 2020. Feeling unwell. Headache. Pain. Nausea. Ate as normal and drank as much water as possible. A bit constipated. Very sick in the evening – supper and most of lunch. CRP down to 57, so not that. Iron tablets have been taken for a few days and antibiotic for months, so no real idea what has caused this. Will see SOCS2 tomorrow after their Monday meeting at which he hopes to speak and make a plan with MB.

Monday 27^th January 2020. Still not feeling great. Very tired and constipated. Tried small amounts of food at a time.

Wednesday 29^th January 2020. Home. 

Thursday 30^th January 2020. Leg very sore and swollen. Felt a ‘pop’ and my thigh immediately swelled up. Even more painful now. Cannot walk or move my leg without significant pain.

Friday 31^st January. Had to go to Friarage to pick up Teicoplanin and supplies. SN advised me to go to JCUH. I had been unable to get a reply from ward .. so was just going to turn up after Friarage but managed to speak to someone on the way. Seen by on call Registrar (soon to become Consultant! – he was very good. He will contact SOCS2 but suggests need for ultrasound. Home and return Wednesday to see SOCS2.

Monday 3^rd February 2020. DN blood.

Tuesday 4^th February 2020. Bewick Mobility. Bought a second hand powerchair to help me get around the house while I can’t walk. They also gave us the name of someone who might be able to help us with a lighter sports style wheelchair, rather than the big heavy medical type, so I can be more independent. We have been sleeping in the living room again since Friday.

Wednesday 5^th February 2020. Saw SOCS2 on Ward … This time a huge haematoma. It was aspirated last week and he took out140mls blood (no anaesthetic) from there, but it started refilling straight away, so there is a persistent bleed. There was more but it did at least remove some of the pressure. No anaesthetic – ouch! Began swelling again straight away.

Thursday 6^th February 2020. Met S for the first time. He has loaned us a wheelchair to try out. It is fabulous!!!

Tuesday 11^th February 2020. Friarage. Saw SOCS2 between surgeries. There seems little advantage to aspiration if it is just going to come back. We were going to leave and observe lump hoping bleed would seal itself off and haematoma gradually absorb. Then he discovered the little enterococcus beasties had grown in the blood aspirated last week. Little beggars are hiding out from the Teicoplanin. Back into JCUH now for another washout – opening a finally beautifully clean and healed wound again.

Wednesday 12^th February 2020. Surgery 23. JCUH washout of hip and haematoma. Much more extensive than the quick and easy one planned. Drain in.

Thursday 13^th February 2020. Drain taking out a good deal of blood. Hopefully, it can come out tomorrow and I can go home.

Friday 14^th February 2020. I should be as restful and careful as I can be for the next two weeks at least. Usually, I would be kept in hospital but because I live so far away I am asked to be sensible instead to avoid further bleeding!

Saturday 15^th February 2020. Leg filling up with blood again already. It is blood – it feels different, and much more painful, in the muscle tissue than fluid.

Monday 17^th February 2020. DN out to do blood and looked at wound. Lots of exudate. Dressing changed by G.

Thursday 20^th February 2020. Leg very swollen and very painful. Being as careful as I can but is still clearly bleeding.

Friday 21^st February 2020. Noticed the dressing was very full of exudate in the evening. Blood and fluid. Odour evident. Night DN offered to come out but there is little they can do. Asked if a day DN could come out in the morning.

Saturday 22^nd February 2020. T 36.6; BP 109/72; P 90. Call from today’s DN. They feel waiting for them might delay things and that I should see a doctor. I suggested calling Ward .. and it was agreed. Phoned the ward and spoke to SN who knows me. We agreed if I came in I would just wait to see the on call who would send me home to observe and speak to SOCS2 on Monday. I will stay home, do obs, go in if temp up or feverish but otherwise phone SOCS2’s secretary on Monday maybe with a view to seeing SOCS2 on Wednesday rather than waiting until the 10^th March to see him at Friarage again as planned. This evening the wound is sore but mostly red around the suture points.

Sunday 23^rd February 2020. Temp. 36.6 and 36.7. Suture points very angry looking and blistering but wound looks fine. There has been enough exudate to make it necessary for daily dressing change though.

Monday 24^th February 2020. (Snow day). DNs out to take blood and remove sutures. We had considered alternate sutures but as some of them are already under skin it was necessary to take them all out. Suture points very angry looking and sutures were plastic, so difficult to remove. All quite sore and stayed in bed all day.

Wednesday 26^th February 2020. Felt so tired and slept most of the day and all night too. No energy.

Thursday 27^th February 2020. Made myself get up, washed and dressed although just that was exhausting. Having coffee in my chair downstairs when I realised I was soaked through my clothes and the chair was wet. The dressing had been only half filled with exudate when I got washed but was now drenched and leaking. Changed by G who thinks the leak is coming from a pin hole sized opening in the wound. DNs informed and someone will come in today.

Friday 28^th February 2020. DN came in. Wound angry but leaking less. Dressing changed at bedtime.

Saturday 29^th February 2020. Continue to be tired. Wound less weepy.

Sunday 1^st March 2020. Wound re dressed at bedtime. Less weepy.

Monday 2^nd March 2020. DN came to do bloods. Managed to get out for lunch. Very tired and sleepy and went to bed very early. Dressing done at bedtime.

Tuesday 3^rd March 2020. Woke at 06:30. Wound dressing full of exudate and dripping fluid mixed with blood. Re dressed and lay on right side. 09:00 woke and dressing dry until I sat up, when it began leaking everywhere again. DN came in to do bloods and see wound. Covered and sitting in bed allowing to drain. Unable to contact SOCS2’s secretary but eventually spoke to an ortho secretary who contacted SOCS2. To go to Wd .. tomorrow to see SOCS2 who is on call. Wound leaking +++ all day.

Wednesday 4^th March 2020. Typically got to see SOCS2 and the wound was looking much better and not weeping nearly so much. Of course, most of the fluid came out yesterday. Also we put on a well padded dressing that also stuck to the wound and helped clotting. SOCS2 not concerned and we hope fluid will keep reducing. He also admitted to being hopelessly optimistic! Blood taken for metal levels and an MRI will be booked for the sometime in the near future to see what fluid build-up there is.

Thursday 5^th March 2020. Very little weeping today. Have bought a thigh/hip support. It is comfortable and adds some compression which will hopefully reduce the space fluid can build in – perhaps performing the function of the missing muscle in some way.

Friday 13^th March

There is still weeping from one small hole but it is significantly less with the compression. However, I have noticed today that my leg is starting to look even more swollen again. I am to have IV Teicoplanin until the end of supply (Sunday) then stop and see what happens. Given the rapid increase in Corona Virus, hospital is the last place I want to be just now. I am checking my temperature regularly as a base line, just in case.

Tuesday 24^th March 2020

The country (and pretty much the entire world) is in lockdown thanks to Coronavirus (Covid19). As of today, everything is restricted and most areas closed down. We are all on enforced stay at home except for essential workers. If I need hospital care now I would have to be screened for Covid-19 and go through A&E rather than to Ward … There is an orthopaedic Go Well Health programme, to which I have elected to be signed up. As access to SOCS2’s secretary might be limited if she is moved to work elsewhere, or worse, becomes ill, then this platform will give me access to the orthopaedic team. My hip is swelling, but mostly I am using the groin support to try to restrict the amount of fluid coming from the hole still in my leg. There is certainly potential for it to become a sinus but at the moment it is just draining blood stained fluid. It just won’t heal. I had my last IV Teicoplanin on 15^th March, 9 days ago. I will have to look back to see how long I have managed without obvious signs of infection in the past to see how long I may have for it to show itself before I can feel completely safe, but if it appears now or in the next few weeks then we have a very difficult situation indeed. I am checking temperature daily – both for signs of infection and for fever. So far all is well.

Monday 30^th March

My wound still has one tiny hole where it weeps from and another stitch area has started to weep a small amount. My leg is swollen. There is information each day on the Go Well Health page, though mostly it is about the covid-19 situation. I check my temperature each morning and it is absolutely fine. No signs of infection from bacteria or virus.

Thursday 2^nd April

The hole in my wound is bigger and is weeping heavily today. It has soaked through three dressings by this evening. It is fluid and blood. There is no noticeable smell. I have been very sleepy and unwell today with very achy muscles and joints though not sick. I have done my first email through the Go Well Health site to contact SOCS2 to let him know.

Saturday 4^th April

There are two holes that are draining and a different area that looks as though it is turning into a sinus again L

Monday 6^th April

SOCS2’s secretary phoned this morning. She is not acting as SOCS2’s secretary during this pandemic and is working from home. He expected me at a clinic in Redcar this morning but no one contacted me about it. I am to go to JCUH on Wednesday. Most people are having their consultations by phone but he wants to see me.

Tuesday 7^th April

Sinus developed and burst. Lost about a pint of fluid and blood. Phoned SOCS2’s secretary who contacted SOCS2 and asked me to come to JCUH via A&E. It is a very strange atmosphere here with covid-19 and lockdown. G was not allowed into A&E with me and can’t visit. A&E and Ward .. which are usually very busy are virtually empty. There is some issue with my blood which has been found to have gram +ive cocci in it, so they are uncertain whether it is my blood or my Hickman line. They are going to avoid using my Hickman while they wait for cultures.

Wednesday 8^th April

Surgery 24 today. It was supposed to be this morning but someone cancelled my chest x ray, which is part of the covid screening, so it was late afternoon when I finally went. I don’t know what they have actually done but there was some thought about putting antibiotic beads into the space again and a washout to look for any more pockets of fluid. Mr … was the consultant who actually saw me yesterday and today though SOCS2 said he was contacting Mr …. I tested negative from the swabs (that was painful!!) and x ray for covid anyway. Let’s just hope I don’t take it home with me instead. I came back to the ward after 8pm. I have PICO dressing again, a catheter and a central line, which is very uncomfortable. I’m back on Teicoplanen. I had big temperature spikes last night and today. CRP was over 100.

Thursday 9^th April

Very tired and sore. Having IV Merepenem twice a day in addition to the Teicoplanen. It was Mr … who came back to see me this morning though Mr … had done the washout. He said that the best had been done to make the situation safe, but unfortunately was unable to give me any details of the surgery. Hb 6 – 2 units of blood given.

Sunday 12^th April

Allowed home on 1g daily IV Ertapenem. There is gentamycin and vancomycin cement in my hip space. My leg is swelling and sore in the way a haematoma is rather than fluid, but the staff know this. It has happened before and, with covid-19 in the hospital it feels like a battlefield patch up and get out anyone who does not yet have the virus. I have a PICO dressing with no weeping through. CRP had risen to over 200 but down to 110 or so. Concern over Hickman line and infection seems to be sorted so central line removed. Appointment to see SOCS2 on Wednesday at JCUH.

Tuesday 14^th April

Hip is stiff and sore with swelling. Appointment for tomorrow is cancelled until Redcar next Monday.

Thursday 16^th April

From a few drops of blood while sitting at the breakfast table to an outpouring of blood in about 10 minutes. DNs phoned who called the paramedic. He started to look under the dressing then left it and called an ambulance. Team stopped twice to try to stem the flow. A&E Darlington also rushed me through. I really thought I was dying this time. So cold and scared! Eventually decided it was the haematoma that had burst because my obs were staying stable. Moved to ward .. and cleaned up. Uncertain as to whether surgery is necessary. Given Tranexamic acid to try to clot the blood and stem the flow.

Friday 17^th April

Persuaded consultant and doctors that we knew what we were doing and could manage at home. We have DN back up and also direct access to PB. He seemed unconcerned so home, rest and see PB on Monday at Redcar as planned.

Monday 20^th April

Saw SOCS2 and SOCS2.5 (!!!) at Redcar. No one really knows what to do with me because we are simply going around in circles. Options are:

Keep dressing and using ertapenem and hope the wound and infection eventually dries up. However, as there was another lot of ‘snotty’ bone to dispose of last week the chances of it staying clean are dubious. Apparently there are several things that like to live in there and ertapenem is the domestos of the antibiotic world!

Open it up and clean it out again – giving rise to further pain, infection and haematoma. Also, Hb is 9 and each time they open me up I need another couple of units of blood.

Put in a cement spacer with antibiotics – but it will probably dislocate like last time.

Put in a new metal hip, but there is little bone left to put it into, there would be a lot of metal to get my leg the right length and stop areas for pooling of blood and fluid, and the metal would attract infection again. It would also dislocate.

Put in a VAC system again rather than dressing to try to dry the area out as it heals, but if there is a slow leak of blood in there from somewhere it will only encourage further bleeding.

Thursday 23^rd April

Bleeding heavily again at the breakfast table. Sent email to SOCS2, text to SOCS2’s secretary and phoned DNs. Outcome was to go to DMH A&E where they had no idea what to do with me until Mr … came on in the afternoon to orthopaedic clinic as he met me last week. Mr … also came in to see me. Decision had been made with SOCS2 to put a VAC dressing on my leg compatible with those the community use here. This was done by the skin viability nurse specialist who did my dressings last week.

Friday 24^th April

VAC was full of blood within 18hours (300ml). DN came with more canisters. Concern is that there is still an internal bleed that will be encouraged by the VAC so we will observe.

Saturday 25^th April

I am tired, but not as bad as last week. I don’t feel I am getting worse. The amount of blood draining into the VAC does seem to be reduced by about 50% during today.

Monday 27^th April

Saw SOCS2 at Redcar. Wound is a very small hole but clearly draining still. Canister removed there with c 200ml bloody fluid. Basic dressing and DN arrived to dress with new VAC. Friarage only for Heparin pick up.

Tuesday 28^th April

VAC changed once – lasted 24 hours. – 300 ml

Wednesday 29^th April

VAC changed once – lasted 36 hours 300 ml.

Thursday 30^th April

Lyndsey changed the VAC dressing and cannister at 12:00 300ml. G changed the VAC canister again at 11pm last night 300ml. At midnight it was beeping to say it was full. Another haematoma bleed 300ml. Phoned the DNs who advised changing the canister again and switching it off. Switching off just made blood pool under the dressing instead so G adjusted the settings to 10 minutes off and 1 minute on to just clear what had collected but not encourage more bleeding. DN came out today and changed the dressing. The wound looks good but almost healed over, so fluid is collecting inside again. My leg is very sore and swollen. Sent photos and update to SOCS2but he is not concerned! G took a new VAC canister to bed with us but it didn’t need changing overnight.

Friday 1^st May

Leg very swollen with an obvious ridge around above my knee. I feel very tired. Managed to get through a virtual online party with Mum for her birthday but early to bed. VAC changed once 300ml.

Saturday 2^nd May

Very tired. VAC canister full at lunchtime 300ml. Changed and lay with leg raised. Constant bleeding through tube. Changed again at 3:00pm 300ml and again at 5:00pm 300ml. Changed again at 21:00 300ml.

Sunday 3^rd May

VAC changed at 10:00 300ml. DNs contacted last night to ask if they could bring more canisters. Reduced intensity and pressure of VAC as low as possible. VAC full and changed at 17:20 300ml. Full again by 18:00 300ml. Contacted DNs who came out, phoned Paramedic and suggested hospital – G took me rather than waiting for an ambulance. A&E DMH. Long wait and didn’t feel we achieved anything we couldn’t have managed at home, but at least reassured Hb is 8.9.

Monday 4^th May

VAC dressing done by G when we got back from hospital at 00:30. Bleeding still free flowing. SOCS2 contacted by e mail yesterday and he responded. Wrote again to say we were home so he phoned this morning. Initial plan was to perhaps go to JCUH today for surgery tomorrow but logistically it works better to go in next Tuesday for surgery Wednesday when he will be available all day. They plan to put in a spacer to try to stretch the tissues again and reduce pocketing and fluid/haematoma build up. This will be completely restrained so should not (!) dislocate and metal/ceramic stem with be covered in cement to try to reduce risk of colonisation again. He seems confident they can do this with a long shaft in the little femur bone I have left. Feeling very tired and spent the day on bed rest. VAC changed again by G at 22:00 300ml.

Tuesday 5^th May

Another day mostly in bed. Got up for a short time but slept on the settee instead. VAC canister changed morning and at bedtime 300ml x 2.

Wednesday 6^th May

Email to SOCS2 as Ertapenem Rx runs out on Saturday. His suggestion is to stop then and wait until outcome of surgery next Wednesday. Feeling very tired and stayed in bed all day. Very little appetite, nausea and only want dry crackers. VAC canister changed once – 300ml

Thursday 7^th May

Felt a little brighter today and got up for breakfast. However, slept all afternoon again. VAC dressing changed by G and new canister 11:30 – 300ml

Friday 8^th May

VAC canister changed by G 01:30 – 300ml

Very tired and stayed in bed all day. Slept most of the morning and afternoon. Little appetite. Nausea. VAC canister changed again by G at 17:00 – 300ml

Saturday 9^th May

VAC canister changed by G at 05:20 – 300ml

Extremely tired and increasingly difficult to get from bed to toilet and back. G phoned DNs who contacted Paramedic (PM) who came out. DN also arrived and they took blood for Hb. The on call GP phoned c. 17:00 to tell me Hb was 5.8 and I needed to be admitted to JCUH Ward .. as I was already known.

VAC canister changed again by G before going to JCUH 17:30 – 300ml

Last Rx Ertapenem for now, done by me on ward. Review to be done after surgery on Wednesday.

Sunday 10^th May

First unit of blood through Hickman line overnight.

VAC changed to S&N type at JCUH at 13:00 – 300ml

Second unit of blood through Hickman line 13:00.

Blood taken for Hb 19:30. Four units of blood planned.

Monday 11^th May

Blood draining into VAC canister continues. Canister changed at 06:00 by night staff 300ml. Feeling tired though much better than Saturday and I am not so pale. Third unit of blood this afternoon. Canister full and changed again at 15:30 300ml and at 22:30 300ml. Tissues are swollen, hard and sore. Blood draining is pale, bright, fresh and liquid. Tried turning down pressure on VAC to 60. Had first tried 25 but there was pooling in the dressing instead.

Tuesday 12^th May

Canister changed at 09:45 300ml, 19:00 300ml. Blood leaking from dressing, which was changed. Covid 19 swabs were taken and chest x ray – negative. X ray also for leg lengths.

Wednesday 13^th May

Canister full 11:00 300ml. I’ve been here since Saturday. I’m changed, consented and ready for theatre and my notes have finally been found in Redcar! Surgery 25 – washout and debridement, fitting of spacer to attempt to stretch out tissues and prevent haematoma or possibilities of fluid build-up and pooling. Metal stem is 2/3^rd length of my femur according to the radiographers. It is wrapped in antibiotic infused cement, as is the constrained cup which is cemented into my pelvis. Hopefully, this will prevent colonisation, although SOCS2 said that once they removed the haematoma the area was clean and dry – and seemed increasingly clean each time they went in. The restrained cup should prevent any dislocation, though of course reduces mobility. Eventually I should be able to put some weight through this but not necessarily walk and it certainly won’t have a long life. PICO dressing was applied but beeping almost immediately. No drainage through it.

Thursday 14^th May

Not in too much pain. Starting to get itches from PCA morphine. No leaking from PICO so removed and replaced with dry dressing. Vancomycin and Ertapenem IV. PB wants me to stay here until Monday to see what cultures grow.

Monday 18^th May

After a long and tedious weekend where I hardly saw anyone – staff are all from gynae and urology and don’t really know what to do with me! In fact, for two days no one even came in to change my bed – I’m finally allowed home. Ertapenem IV only at home. 6 weeks of bed to chair transfers only and then weight bearing as tolerated.

Tuesday 19^th May

I can already feel fluid moving around in my thigh. Measured diameter just above freckle – 51.5cm.

Wednesday 20^th May

Scar length is 38.5cm. Can still feel fluid moving inside. Thigh diameter is 56.5cm, so there must have been some mistake on Tuesday as right thigh is also 56.5cm. Feet and ankles have been swelling since surgery and continue to do so unless raised.

Thursday 21^st May

Thigh diameter 57.5cm. I can see a bulge starting to appear.

Monday 1^st June

JCUH review with SOCS2. There is now obvious swelling in the usual two areas of my thigh – top and bottom with ‘bridge’ between. It is very dry and there are two areas that look as though sinuses could form. SOCS2 wants me to have IV Ertapenem for another 3 weeks so must go and collect that from Friarage tomorrow. Hb 9.3. I remain tired and while trying to be optimistic I fear there is another infection brewing.

Tuesday 2^nd June

Trip to Friarage to pick up 3 weeks of Ertapenem and supplies.

Tuesday 9^th June

Inflammation, dizziness and nausea. 

Saturday 13^th June.

My left thigh is swelling significantly above and below the harder ‘bridge’ part of my leg. The wound is dry and clean, and the top part of the scar is completely healed. Lower down there are a number of thinning areas which are purple and very dry and could potentially become sinuses. I have been unwell this week with dizziness, light-headedness, nausea and vomiting from Tuesday (9^th) and spent most of the week in bed. I hoped to have some results from Monday’s blood tests to see if that was affecting the way I was feeling but I have gradually improved. Goodness knows how I have caught anything at home, although it could have been the clinic visit at Redcar or the antibiotic supply trip to Friarage last week.

Monday 15^th June

Sent photos of my leg to SOCS2. He agrees the redness and look of new sinuses is concerning. To see him in clinic next Tuesday. Covered the sore areas with Covawound to protect them.

Tuesday 23^rd June

Saw SOCS2 and another consultant/registrar I hadn’t met before. All agree we are going round in circles and nothing is fixing this. I have 6 thinning purple bulges along my scar which may potentially become sinuses. I am to stay on Ertapenem for another week and be discussed at the MDT meeting on Monday – assuming my leg does not burst open before then. The thinking is that I will go back into hospital next Tuesday for surgery on Wednesday, though whether that will be a washout or removal of all the implants again we don’t yet know. In the meantime I also had an emergency MRI at Friarage (they phoned to offer an appointment this afternoon just as we got back home) and picked up another week worth of antibiotics.

Friday 26^th June

Sent photos of my leg to SOCS2 for information on Monday. My leg is weeping small amounts of gunge though not actually burst. I’m keeping it covered to keep it clean and to try to protect the area.

Wednesday 1^st July

Last night the wound burst open and I drained over a litre of blood-stained fluid over the bathroom tiles and a number of towels! It could have been worse – I might have already been in bed (Yuk!). SOCS2 had initially thought to take me in for washout and debridement – and maybe remove the spacer again today but would prefer to have a proper plan in place to break the cycle.

I emailed SOCS2 this morning and he said that as we had it well padded and dressed now, if we were ok he was happy for me to stay home for now but if I have any concerns or become ill I’m to go to JCUH for admission. 

In the meantime, microbiology are taking blood from me today to start looking at immunity issues in case that is why I seem to managed to colonise 10 different bacterium in my hip! Also to continue with IV antibiotics even though the Ertapenem does not seem to be attacking everything. SOCS2 is speaking again to the PS2 with a view to filling the space in my hip with muscle to try to stop the fluid build-up and tissue breakdown. 

However, that also has its problems. If muscle is taken from my back to pack my hip then firstly, it will not ‘replace’ the muscle loss in being useful. It will weaken my back and shoulder and if it doesn’t work and there is still fluid build-up or infection then it will leave me in a considerably worse state than I am now. Also, chances are – a hint of infection and plastics won’t touch me anyway. Mentally, I am exhausted. I’m trying to keep spirits up and remain cheerful, counting my blessings, appreciating all the thoughts and prayers being sent my way, but tired and unmotivated because I don’t know what is going to hit me next, when I will be in hospital again (soon and probably for a longish time) and away from home and family. It is what it is though and there is not much I can do about it other than try to keep occupied, sleep a lot and find reasons to be grateful .

Monday 6^th July

Since Friday there are now two large holes in my leg and it is clear that the skin is breaking down. We are using Keramax and Cosmapore to soak up as much exudate as possible. It looks dreadful. 

On Saturday I phoned to ask a DN to visit. DN packed it with Aquacel and covered it again knowing that there should soon be a plan with SOCS2. 

On Sunday I felt it was even more gungy and phoned the DN again to come out. I had dressed it during the night, G did it again in the morning and then it was done a third time with the DN, who was concerned. It is clear now that there is one deep cavity and only skin holding the holes together which will soon break down to one big hole. We measured the cavity at 7cm deep, 2.5cm wide and 9cm long. She thought I should go to the hospital but phoned SDN to compare how the wound had changed (or not) from yesterday. She asked me to phone Ward .. for advice. Sister called me back after speaking to the on call reg. The suggestion was, as I am well (ish) then stay home and get a plan in place with SOCS2. I sent him an email with photos which I hope he will receive today. 

Last night I redressed it again at 4am and had to call G to do it again at 8am. I have kept the groin / thigh support on for the past two days to try to compress it and also help with the pain in my hip space that has developed. However, although tired as usual, my temp is good and I don’t feel unwell.

Wednesday 8^th July

SN phoned from Friarage to ask how I was feeling and tell me my CRP was 140. e mailed SOCS2 to let him know and also the immune deficiency results though he was home and couldn’t access the system. At least they are available for discussion on Monday. We are doing dressings with super absorbency 4 times a day. We think Monday’s discussion will focus on removing the implant and returning to a Girdlestone again and filling the cavity with muscle from elsewhere. However, I’m reasonably confident that PS2 will not want to do that when we are still uncertain about infection. SOCS2 has requested that a VAC be applied again due to the amount of exudate. DNs will organise this with tissue viability.

Friday 10^th July

Two DNs came out to do the VAC dressing. There was some concern that the bridge of skin between the holes would be a problem but DN managed to thread through some sponge to support it underneath so that it was not torn when the vacuum was turned on. Not ideal but considerably better than all the awful dressings and wet clothes.

Saturday 11^th July.

VAC put on by DN Friday 11:30. Canister full 11:17 today (300ml). Feeling very tired today, though managed to sit and sew all afternoon yesterday.

Sunday 12^th July

VAC changed again at 2:30pm (300ml). Continue to be very tired. Exhausted after spending time with mum, R & K.

Monday 13^th July

Appointment at JCUH with SOCS2 and PS2. Canister changed along with dressing at the clinic (300ml). It is considered by the team that we cannot stay as we are – reopening or debriding a burst wound every 6 – 8 weeks and I can’t stay on Ertapenem forever – especially as there seems to be something it isn’t reaching. The choices are not really choices at all.

1. Remove all implants, return to Girdlestone and debride again leaving the entire length of the cavity open and trying to get it to heal itself from the bottom up with a VAC dressing. This is hoping too that we get the infection – helped by calcium phosphate beads filled with antibiotic mixes and avoid haematomas. Downside is shortened leg and disability.
2. Take muscle from shoulder and back to pack around a new implant. Problem is, if this does not work and stop fluid and infection build up it is useless and also renders my left side pretty useless for moving myself around in a wheelchair. Obviously, PS2 is not keen on this plan.
3. Amputation of my leg – also with its own problems and absolutely the last straw. 

Tuesday 14^th July

DN came to take blood. She will be back on Friday to re do the VAC. Canister changed (300ml).

Wednesday 15^th July

Canister changed (300ml).

Thursday 16^th July.

Email from SOCS2 to tell me surgery can be done on the 5^th August. Until then I am to self-isolate. Canister changed once (300ml).

Friday 17^th July

Pre surgical assessment was done by telephone this morning. I still need to go to JCUH on Monday for x matching of bloods and MRSA swabs on Monday. DN came to re do the VAC dressing. DN removed two small pieces of foam from inside the wound. The nurse on Monday appears to have put in small pieces rather than one longer piece to support the skin bridge – which remarkably is still intact! Canister changed once (300ml). DN explained about the amount of protein I am losing in the serous fluid and suggested supplements. Fluid draining is light brown and clear.

Saturday 18^th July

Canister changed once (300ml).

Sunday 19^th July

Canister changed once (300ml). Hickman line flushed and heparin added, and Bio filter changed by me.

Monday 20^th July

Texted DNs to remind them I was at JCUH today, though DN still came. VAC dressing changed. JCUH for x match, group and save and MRSA swabs. Canister changed once (300ml).

Tuesday 21^st July

The barrier swab DN used yesterday seems to have made my leg more comfortable. Less itchy and sore than it has been. Canister changed once (300ml).

Wednesday 22^nd July

The VAC pump began beeping every few minutes after we changed the canister today (300ml). G has checked the seal and we have experimented with changing the rate and intensity of the VAC to see if we can solve the problem. Eventually overnight I just had to turn it off so we could sleep. We can find nothing wrong with the pump so it must be the dressing itself.

Thursday 23^rd July

Texted DNs to ask if DN could come today rather than tomorrow. There was a blockage on the silicone dressing stopping it working effectively. The blockage was part of me – flesh. She removed the foam from inside and found an extra piece that must have been put in by the nurse last Monday. The wound is healing but also things are becoming visible from the surface – such as what we assume is the thread that the antibiotic beads were on. Otherwise the wound continues to be very clean and getting smaller. Hopefully this bodes well for healing after the next surgery. DN reminded me about the need to replace the protein for healing. Drainage is a bit more bloody than it has been. Canister changed 11:00pm (300ml). They had been lasting 26 – 28 hours but now it is back to only 24 hours.

Friday 24^th July

There is a leak from the dressing somewhere and it is also very sore on my skin again. G eventually took it all down to the sponge and reapplied barrier cream to my skin to relieve the discomfort, then redressed it, trying to keep as much as possible off the back of my leg which is where it is worst affected. Leak solved. Canister changed 11:00pm again (300ml). Fluid continues to be bloody. I broke my isolation, though I was as careful as possible. It is the 2^nd anniversary of J&J’s deaths so we took Mum to the moors to lay flowers where we scattered theirs and Dad’s ashes. I have bought a subscription to Huel which will hopefully be a complete nutritional replacement which may help now pre op and also in hospital where the food is far from completely nutritious.

Saturday 25^th July

Canister changed 11:00pm (300ml). Fluid back to being more brown and liquid with less blood. I have found this week that I am very tired and have numerous naps through the day. Having my Huel shake once a day so any other nutrients I have in my food is a bonus.

Sunday 26^th July

Canister changed 11:00pm (300ml).

Monday 27^th July

Two DNs came to do blood and change the dressing. The holes are healing up but we don’t know how big the cavity is underneath – just that there is now a big gouge out of my leg. The pump/dressing was fine all day and started playing up at midnight. I tried to patch it and changed the canister (300ml) but it was still noisy.

Tuesday 28^th July

G changed the entire dressing this morning again as it hadn’t drained overnight. It seems to be better now although there was no real indication about what the problem had been. email to SOCS2 – surgery still on for next Wednesday, probable admission to wd .. on Tuesday evening. Will probably be in more than 5 days. Visitors are still not allowed due to covid 19 L. Canister changed (300ml).

Wednesday 29^th July

I have such a problem with the film of these dressings. They burn my leg making it extremely itchy and sore. I have to peel it away from the sore spots even though there is a barrier layer below it. I tried antihistamine last night and again this morning then slept all afternoon! Canister changed (300ml).

Thursday 30^th July

DN came to change the VAC dressing. She has tried to make it as small as possible to still get a seal but it is still very sore already this evening. I have slept again all afternoon. I am very weary. Whether this is infection or psychological due to the fed up/dread of being in hospital yet again next week – especially since again I will be on my own as G still can’t visit. Canister changed this evening (300ml).

Friday 31^st July

Canister changed at 11:00pm (300ml).

Saturday 1^st August

Canister still not full when we went to bed. May last until morning.

Sunday 2^nd August

Canister changed this morning (300ml).

Monday 3^rd August

DN came to do blood and change the VAC dressing. G actually changed it with a tutorial for her as she didn’t know how to do it :-D. Unfortunately, I wore jeans and eventually tore it so G had to add a new tube to the dressing. Canister changed this afternoon (300ml).

Tuesday 4^th August

Ward .. as instructed about 4:00pm but waited a couple of hours for a bed. At least G was able to stay with me. Booked in by doctors and consent done for tomorrow. Canister changed while we were waiting (300ml). Covid swabs done.

Wednesday 5^th August

Surgery 26 – wash out, debridement and removal of implant for the third time – Girdlestone. Went down for surgery c 11:00. Went to sleep in the theatre as wheeled straight in but not sure where I woke up. I was in a lot of pain and also struggling to breathe – trying to drag air in. SOCS2 was there. I remember this happening last time. It only started when I moved. I suspect panic attack from the pain but it is an awful feeling. Improved with O2 through a mask. 800ml canister attached. Only allowed it to get to about (400ml – thick and red) before shouting to be changed. Having Tramadol and Oromorph for pain. There was some talk of PCA but it didn’t happen. Feeling very tired, weak sick – retching and vomiting whenever I try to move or speak. 

Thursday 6^th August

Nausea and vomiting continues. Spasms are strong and painful in my hands and feet. I am pale – my hands and feet are white. A lot of pain and swelling in my leg. Continue to take both Tramadol and Oromorph. Canister only lets itself get half full before complaining it is full or blocked. (400 mls bright red and thick). Very hot on the ward – thank goodness for the fan G bought for me! Saw SOCS2 who wants Hb done again and blood up regardless of result as I am losing so much through the VAC. Hb 8. First unit given overnight.

Friday 7^th August

I brought DVDs and played with me and music but I can’t be bothered with them and just want to sleep. Hb still dropped despite the unit of blood. Two more units prescribed and given. Canister filled to 600mls before changing but it is much thinner and more serous now. Seen by physios who are happy with my transfers and by OT who will look to finding me a bed lever to help me in and out of bed when I get home.

Saturday 8^th August

Not sure whether I’m mixing up memories and days now as I have to try to keep reminding myself of the day. Canister is draining serous fluid mixed with blood and managed about 500mls before complaining it was blocked. Keep hoping to feel better and worried that if the pain doesn’t settle and I am still struggling to get up and down (even though I’m fine when I’m lying or sitting still) that it may stop me getting home. G drove over with nighties and juice for me so we got to see each other at the door for a few minutes. Saw Dr who would Rx blood again as soon as there were any issues. Felt more able to sit up and read, crochet or play settlers for the first time.

Sunday 9^th August

Spent all day convinced it was Monday and that it couldn’t still be Sunday! Fluid into VAC is thicker and more red again (500ml). Hb is better though at 10.4, though it may still go down again due to the amount of fluid loss into the drain. I am definitely feeling better in the mornings for my Huel each day for breakfast. Watched DVDs and crocheted today with just one afternoon nap.

Monday 10^th August

Saw OT who will order bed lever and toilet frame. She had hoped to get me something that attached to the toilet seat with arms that could be raised but they don’t seem to do them in our area. Hoped to go home today but the MDT meeting deemed that I should stay here until the end of the week. I was really upset, especially as the news came through a nurse pocking her head around the door and telling me what the team had decided without anyone coming to see me. However, a little later Mr … came down to explain. The canister is still draining about 500 – 600 mls a day. My CRP had crept up into the 90s, so will need to be rechecked – that and Hb should be done on Wednesday. Mr … will come back Wednesday or Thursday to reassess the wound and dressing. All being well it will come out easily and be repacked. Otherwise I could end up back in theatre to get it out. 

Tuesday 11^th August

Just sitting in limbo with nothing to do. That’s not quite true but I can’t settle to do much. I suppose it is enforced rest though. At home I’d want to be doing something. On this stint on ward .. it has felt quite difficult when I have needed something – regularly finding when I press my call bell (which can only have been half a dozen times in my whole stay) that it takes over ½ hour for someone to answer it. Today it was 1 hour and 10 minutes. Admittedly in that time an HCA will come and turn it off and say she will get the nurse, then the nurse doesn’t come and we start all over again. The staff are all complaining about how busy it is and also in some cases, about other staff who they feel should be answering buzzers and are not bothering to. This is not my usual experience of ward …

Wednesday 12^th August

Mr … came to change my dressing. There was a possibility of going to theatre again tomorrow for a GA to get it out, but I really want to go home. It was very painful having it all peeled away but we managed. It is clean and dry and now re packed. He assures me the first time it is dressed is the worst! It did feel as though he was tearing my insides out, so lots more to look forward to!

Thursday 13^th August

Finally, I’m allowed to go home. I’m tired and sore but so pleased to be back in my own bed. My wound is half way over my left buttock and down to about 3 inches above my left knee. The cavity is about 10” x 4” and full depth. Sister … commented how strange it was to be looking in a hip space that deep and not seeing a hip.

Monday 17^th August

I’ve started to have significant pain in my hip and down my left leg. It feels as though something tightens in my leg behind the knee and the pain that follows is excruciating and I can’t move. I was told they were working around my sciatic nerve and I think it may have something to do with that. Also the dressing pack that went in last Wednesday might just be in a place where it is being aggravated.

Tuesday 18^th August

Asked GP on a telephone call if I could have some Oramorph for this pain. I hate the idea of taking such strong pain relief long term but I don’t think I have a choice here. 

Wednesday 19^th August

The pain is so bad now that I can hardly get out of bed without yelping.

Saturday 22^nd August

I’m back in hospital- even the same side room! I was screaming in pain when I had to move. When eventually I had an episode I couldn’t get control of, I couldn’t even move my toes without the pain shooting through my leg. I’ve never felt anything like this. G phoned the district nurse. She in turn called our local paramedic, who gave me Morphine and Entonox and called for an ambulance. My surgeon’s initial concern during the last surgery was the amount of work they had to carry out carefully around the sciatic nerve. It took a few days to become a real issue but once the pain started it was excruciating. It seems my admission may also have been timely as my CRP markers are 247 and my temperature started to spike yesterday. Whether it is infection that is causing the sciatic problem or a coincidence we don’t yet know, but I had MRI last night and am waiting to see my consultant today still. He has been on holiday between my last surgery and today, though the second consultant who did my surgery has been on call. They may take me back to theatre on Wednesday to take out the packing and have a look. If I’ve already had a GA, apart from being considerably comfortable, they can just get on with anything that needs to be done. I feel like a pawn in some universal version of chess wondering what else could possibly come my way because I’ve reached the limitations of my imagination.

Sunday 23^rd August

No One seems to be addressing the pain issue now they have found the infection. Fortunately, in being extremely careful, I have managed not to have any extreme pain. I find that if I can twist my left leg over to the right and move without using to take any weight at all and be bent, then I manage to avoid that horrible tightness that leads to agony.

Tuesday 25^th August

I’m not well. There is talk of antibiotics from microbiology but nothing has been determined yet. I am going back to theatre tomorrow for another washout and look around. They also want to remove my Hickman line, which I am not happy about, in case the infection is coming from there. Blood has been taken for blood cultures too. I’m changing canisters which are sometimes serous fluid with blood and sometimes pure blood 3 times a day still. SOCS2 said they might put in a central line. I said 😔 because they are so uncomfortable. There may be a PICC instead but I suppose it depends on whether anyone can do that. However if it is the Hickman causing the problem it will only be a short dose of antibiotics to clear up the problem.

Wednesday 26^th August

Surgery 27. I’m last in theatre because of my infection. They are going to take out my Hickman line as the next possible cause for gram positive bacteria in my blood – especially if the wound looks clean. The Vac is draining it well so they think it may be something to do with the vac or packing causing the pain – especially as it was not like this prior to the first dressing change. Microbiology also want an echo scan of my heart sometime soon too in case there is bacteria on my heart, and that all valves are working correctly. I half expected to wake up with a central line in but didn’t. Hopefully we can manage everything with cannulas until I can have a new line of some sort.

Thursday 27^th August

Had the echo scan of my heart. Next it was the lovely Covid swab again!!! I’m dreading the person who wants to try to get access to my veins again coming through the door, but I’m well overdue for antibiotics now. I’ve been here since Saturday and no one has done anything rid me of the pain. I hardly dare move between bed and chair now! Sister … asked if anyone had contacted the pain team, which I don’t think they have, so she said she would do it herself.

Friday 28^th August

Another dozen or so attempts to get a vein by two very experienced phlebotomists. It’s not happening. They are cross on my behalf about the Hickman but writing up their notes to say I need a new one in. There is a plan – they cannot put a mid-line (PICC) in until Sunday but are concerned it will not work because my peripheral veins are so wrecked. They cannot put a Hickman in until Tuesday. I have had one dose of oral Flufloxacillin but it is not really sufficient with my bacteria so they must get venous access and can’t risk waiting. The on-call anaesthetist has told them to put me on the emergency list for tonight. They will take me to theatre and put in a central line to see me through until Tuesday when they will replace it for a Hickman. I had expected to come out of theatre with a central line yesterday but now I have to have it inserted into my neck under a local – oh joy! I hate central lines but see there is no choice in the circumstances. However, I do still feel, that even if it was the right thing to do to take out the Hickman, that they should have waited until they were certain of other venous access especially since the anaesthetist could have done this while I was asleep yesterday. Then I wouldn’t have been 4 – 6 doses behind on my antibiotics.

Sunday 30th August

A bad night. A serious pain episode between 10:00 and midnight. The staff called the on call doctor but he took so long to come up and I was crying with pain. Eventually I managed to relax it sufficiently to turn my leg big toe (I was in bed). Once I could do that it was a very slow progression to getting onto my right side with pain but not agony at least. Of course that was the time the doctor turned up!!! He has at least written me up for hourly oromorph though for a week now people have been saying I should be assessed by the pain team but no one has done anything about it.

Then my vac pump playing up got worse, sounding like a rickety old tractor engine. A sister and staff nurse tried to do something about it before they went off shift but the night staff miraculously managed to fix it. They don’t know what they suddenly got right with it either.

However, the pain makes me anxious about getting in and out of bed and so I’ve been sitting in my chair since 06:30 and lying with my head on my pillow on the windowsill. The downside of this is that my puffy feet are more like balloons.

Tuesday 1^st September

The pain team unfortunately arrived while I was downstairs having a more permanent line put in. They are supposed to come back tomorrow. In radiology I had waited days for and expected a new Hickman – especially as it turns out the bugs in the blood cultures are the same as those in my hip – there was nothing wrong with the original Hickman!!! Anyway, the radiologist and the radiographer got together and decided I didn’t need a Hickman and they were going to put in a mid-line. I should have been more alerted when the radiographer was going to do this but in my ignorance I thought, ok I’ve had a PICC before so that will be fine. It turns out a mid-line is little more than a glorified venflon. It will have to be changed to a Hickman anyway if I have to have antibiotics for more than 6 weeks. I can’t say I’m at all pleased. 

Vac dressing done. I have photos of the huge cavity. E likened it to a shark bite! I’m certain that there were one (or two) VAC dressings with the last canister on the windowsill when I went to theatre but they are not there now. Have to change to the hospital type temporarily instead. It was done by Sister … with FaceTime help from G. He has so much more experience of this system than the nursing team.

Wednesday 2^nd September

The pain team were supposed to be back today but haven’t. However, they did say yesterday to staff that it was better to have a couple of days pregabalin my system to assess how it was working. I don’t have much pain but I am still very nervous each time I move between bed and chair. I have seen SOCS2 – apparently I am officially the biggest mystery in the hospital and the person who has had the worst of all the worst possible issues with MoM hips – I’m 1 in 1000000 – so that’s nice 😊!!! I’m going for a CAT scan probably tomorrow now to cross all t’s etc to see if there is any link at all to my bowel as the bacteria are some the same as before and some new which should only be in my GI system. There have already been checks to the scans to ensure that there is no link to my GI system from my hip space. The extra Staphaurius is a real puzzle. 

Friday 4^th September

G came over to have lunch with me. We bought salads from M&S and sat out in one of the gardens. He came back with me to carry bags and decided to stay until after my dressing was done as he has to report back to the DNs. Sister … did the dressing (not until about 19:00!) but can’t believe our DNs have no experience of this. G did a video to show the DNs how to do this. SOCS2 has also been up, which was helpful as G was there and we had a long discussion about pain, bacteria and sources, antibiotics and also the issues I am having with incontinence. He will ask the radiologist to have a closer look at the spinal nerves on my MRI scan to see if there are any issues there as the problem comes and goes. I have had tightening in the back of my left knee all day which is worrying me.

Leg has finally gone. Half in and out of my chair. Had some Oramorph. Hopefully can move in a few minutes. I managed to get to my phone, grabber and nurse call bell by hooking my invisible doggy lead around electrical cables. SN on duty and HCA on duty were unhelpful. They both just went off and left me sobbing in pain and unable to move. It took some time, I couldn’t move, screaming in pain. I’ve managed to get in my chair eventually having tried hard to relax as much as possible until I could move the big toe of my left foot. Once I could do that I could move my foot and turn it in supported by my right leg, then the same with my whole leg. One more severe pain as that turned but it seemed to release whatever was causing the pain. I had another glug of Oramorph from my own stash and then tried successfully to get into bed. I have been written up for a starter dose of Pregabalin 75mg after many, many requests since I told the on call consultant about it all last weekend and he suggested then that I was written up for Gabapentin. Eventually, SN got my drug cardex and pushed it under the nose of a ward doctor and told him to do it there and then, though they went for Pregabalin first to see if that worked. It certainly isn’t so far anyway.

Sunday 6^th September

Every time I have antibiotics the venflon fails. The mid-line also failed after just a couple of days. I had a phlebotomist up at 00:30 trying to get venous access. I have been stabbed more than 30 times by different people trying to find veins for venflons. Today an anaesthetist came up with an ultra sound scanner. He managed to get a deep venflon in which will hopefully take me forward to having another Hickman. However, I am cross because it will be after the weekend again and if they had done as asked in the first place I would have been home by now. VAC dressing was due to be changed. It is complaining there is a leak.

Monday 7^th September

The new Hickman is finally in and works perfectly. Still struggling with a leak from VAC but no one has done the dressing.

Tuesday 8^th September

I hoped to go home today but SOCS2 didn’t come until quite late in the day – still in theatre scrubs. There are a number of reasons I have to wait. I argued that the IV could be dealt with at Friarage – OPHAT haven’t been to see me as they said they would and I need an appointment for the Friarage in the next week anyway. The VAC (G did a video when Sister … last changed it but she had still been taking advice from G anyway). – The DNs are not confident with it but it is not like they can come here to learn but they have G’s video now. We had been doing for most of the nurses and teaching them. I’m still waiting with a leaking VAC since Sunday for someone to come and change it. It keeps being handed over from shift to shift but no one comes to do it. The getting appropriate antibiotics from pharmacy this late in the day I understand and that with the chaotic nature of this second ward sister … just wants to make sure nothing is rushed and missed I also understand. I just wanted to go home and hadn’t expected to have yet another night of solitary confinement! My Pregabalin has been increased to 150mg x 2 day. Apparently it works by building up in your system and blocking the information between the nerve and the brain.

Wednesday 9^th September

I can finally go home! G arrived at about 15:00 as we thought that should be safe enough. My pharmacy script had gone down first thing this morning but it was 16:30 before it was finally all checked and a nurse went down to get it all for me. Sister changed my VAC dressing after lunch. It should be changed every 72 hours, so it was due on Sunday but no one who could do it seemed to think it was any sort of priority. I have spent a lot of time this time in hospital thinking – I know you are busy and have too many patients, but I am one of them and are surely entitled to some of your time too. The classic was the other day when I had another pain issue – SN … was on duty again and instead of trying to help she just said I’ll leave you and come back and check on you in a few minutes (not helpful). I asked for Oramorph. She came back 10 minutes later – without the Oramorph.

During this stay I have had an MRI scan of my pelvis and lower back to look at nerves. I have also had a CT scan to look for anything that might be linking bowel to my hip as an access for these bacteria. It is a complete puzzle as to how I can keep being reinfected by some of the same bugs but also some new ones – about a dozen different ones all in all. Unfortunately, I have not made a record of the dates I have had these done and may have to search through texts to see if I told anyone else.

Tuesday 15^th September

Hb is 7. I’m going to OPHAT Friarage tomorrow anyway so they’ll do a group and save then so I can go back Thursday for blood. I think I might be sleeping for most of the day again!

Thursday 17^th September

Two bags of blood at OPHAT. I’m better but could do with a third. Still my iron levels are also low so perhaps I’ll pick up with the tablets. Bloods on Monday will inform if I need any more next week.

Monday 28^th September

Friarage. Remaining Hickman stitches out and re dressed. Bloods and Iron infusion.

Monday 5^th October

Saw SOCS2 at Redcar clinic. He is pleased with progress of wound, though everyone who sees it says it is the biggest they have ever seen. It will be a miracle if this works! I’m having the VAC dressed every other day by the DNs and am losing 600mls of serous fluid and blood every 24 hours – which is alarming most people. We’ll just carry on and hope it settles.

Wednesday 7^th October

I’m feeling much better for having had the iron transfusion. I’ve still needed long afternoon sleeps but otherwise I have been able to do some things. My Hb this week is 10.3 but my CRP is creeping up to 57. GP phoned from the surgery to ask how I was and tell me my thyroid tests were a little low and I’m to increase to 150mcg. 

Friday 20th November

Due to see SOCS2 in the Redcar clinic but I was already in JCUH. I started feeling a little unwell last night. I was not really surprised as I had heavy blood loss – 900mls very deep red blood into the VAC withing 6 hours. Today I felt much more unwell and stayed in bed. DN came to do my VAC dressing. Very low BP and raised temp. She was not happy so called community paramedic … who also wasn’t happy and had me sent to JCUH by ambulance. We had to ok this by him phoning DMH and them saying there was nothing they could do for me. Then G phoning, SOCS2’s secretary to explain the issue. She spoke to SOCS2 and they told me to go into JCUH A&E. My CRP is well over 200 – not surprising I feel unwell. They are keeping me in to monitor.

Monday 23rd November

CRP down to 130 ish. Allowed home as it is going in the right direction. Funny how anyone else would panic about a CRP over 10 and mine at 130 is ‘normal’!

Wednesday 16^th December

My BP has been staying around 9 and my CRP around 120, though this week is down to 90ish. I am occasionally having large blood losses through my VAC. I had an iron transfusion today to try to boost the red cell count.

Friday 18^th December

DN phoned to ask if there was any chance of G doing my dressings over Christmas and New Year as they are working on a skeleton staff. We are quite happy with this as he is usually supervising others to do it. We can always call them if we are concerned.

Monday 21^st DecemberReview at JCUH with SOCS2.