East Grinstead hospital

So, you may have been wondering (or not) where I have been since the London marathon. Two weeks post marathon I had scheduled surgery for another nerve issue in my stump which was getting considerably worse throughout my training. I had another TMR surgery with muscle graft, which went really well. Unfortunately I had a nerve catheter in my leg for pain control post op. These work really well and really help with pain, but for me, they seem to cause infections. We diddnt know this trend until this point. I had the catheter removed after 4 days and was already very poorly with a huge infection. I ended up going back to theatre to have more surgery, and my leg was filled with puss. I was then put on very strong Intravenous antibiotics, but after another week the infection returned, and so this meant more surgery. More antibiotics, more cannulas and more pain. I felt pretty unwell. I lost about a stone in the month I spent in hospital. The saving grace was that my surgeons were phenomenal, and the nurses at East Grinstead hospital were amazing. They were so efficient and attentive. I can’t thank them enough for their care.

After a month, I was finally well enough to go home, but was still in a considerable amount of pain. But after a week more, I decided it was time to get back to training. Unfortunately I had lost quite a bit of muscle and strength, and so the marathon distance which I was used to wheeling, had become almost impossible, especially in the rain and freezing cold weather. But all hope is not lost. I am still out there training as before and building my way back up to marathon distance. My goal being to make it back to marathon before Christmas day. This will be weather depending, but I will do my very best to get there. I don’t give up easily, as you all know!

I can’t wait to get back to where I was before. Some exciting news came when I was in hospital, I have been accepted for the London marathon again next year, so I will be entering and attempting to beat my own record. So this provides a huge incentive for me to get back there ASAP. Also, if all goes well, we are a go for attempting lands end to John O’groates using my everyday non-sport wheelchair, which will be another world record. We are hoping for August 2023. So this is another huge incentive. So it’s training, training, and more training for me. I am loving it, and hating the cold! It makes wheeling exceptionally tricky, which very slippy hands. But, it is all good strength work, and I can’t wait to reach some new goals. 😍🙏

20 days and counting …

As you may have gathered, I’m still in hospital! I mistakenly thought I’d be in and out within 5 days. I was pre-warned that it could take a couple of weeks, or possibly longer, but I thought, I’m tough, I’ve been through lots already, I have a very high tolerance to pain… None of those things make any difference to any hospital stay. It is impossible to predict how you will recover, or how long it will take. I can say, that previous to this experience, I was certain that I had reached the very hight of my pain level. That pain couldn’t possibly be worse that CRPS flares with neuromas… I was wrong. CRPS flares, with surgery is far worse. I was warned, so it wasn’t lime I went into this not knowing that things would be tough. But usual me… I shrugged it off, and thought to myself ‘oh well, what’s a little more pain?’ Well, I can tell you… a lot!!! I’m feeling battered, bruised, sore, sick, tired, and missing my babies. All that said, however, things are steadily improving, and the care and treatment I have received here at the QVH hospital in East Grinstead has been just incredible. All of the staff are just to kind, and caring. They have been there for me through night and day. I know you must be thinking, well thats what is supposed to happen in hospital, well let me say… it doesn’t always happen. After being a Nirse myself for 14 years, I’ve seen a substantial lack in compassion within the field. Yet here, they all have oodles of it. They are warm, and friendly. They make me cups of tea in the night when I’m awake in pain. My surgeon Tania Cubison, the genius, always comes by every morning to check on me. The pain nurses have been in every day, trying everything they can to see me through the tough times. The anaesthetists have been to see me every morning and evening to administer boluses into the nerve catheter in my leg. I am honestly, truly amazed.

So, we have lowered my intravenous pain medications now, and are lowering the local anaesthetic meds going into the nerve catheter in my leg. The pain is rather bad a couple of times a day, which is when the anaesthetists step in. But we’re making improvements in that respect as well. The plan is that the nerve catheter needs to come out by the weekend, as its been in too long by that stage, and could increase risk of infection, which I definitely do not need. So watch this space. Hopefully I will be home by early next week, if not sooner 🤞

TMR progress…

I’ve now been in hospital 9 days. 8 days post op. Had my TMR (Targeted Muscle Reinnervation) surgery on Thursday last week. Had a bit of a rocky ride since then. My pain levels sky rocketed and not much seemed to bring it down, other than visits from an anaesthetist to put a bolus (big volume) of local anaesthetic into the catheter (tube) which was placed during surgery to administer constant local anaesthetic into my leg. We now think that the catheter was rubbing directly on a nerve, so causing more pain. So yesterday, the Dr’s had a pow-wow and decided to take the catheter out. The hope being that the pain would get better. It did with movement, but not anything else, intact it sky rocketed further. I spent the day screaming in pain. Never felt anything so bad. My CRPS was flaring, and my leg was killing, so it was back to theatre to have a new nerve catheter placed.

Now, the next morning, there is a significant improvement. My pain is back to its normal level. Which is amazing. Along with the pain before, the Dr’s tried a few new medicines. Wish we hadn’t, as they all seemed to cause the same reaction… Sudden Tachycardia (high heart rate over 100 bpm) and light headedness. One of them dropped my BP as well, and another caused extreme shaking all over my body. This happened 6 times in total. Rather scary. So now, today, I will be happy just to have a day with less pain, and no complications.

So now I’m still in East Grinstead hospital. I have to say, the staff are all absolutely amazing. Completely different to any other hospital stay I’ve had. They actually believe you when you say that your in pain. They don’t try to kick you out just because they are convinced you should be going home now! Unlike another hospital. Who decided that after a week, I shouldn’t be in as much pain as I was, and started to get quite impatient with me for being in pain!

Here is what hospital treatment should be like. Where nurses actually care, and no one makes you feel like your a burden. I’d actually consider moving here, just for better treatment! So, fingers and toes crossed for the next few days, and with no more blips, hopefully I will start to recover nicely.

The countdown begins…

In 3 days, or 4 including today, I will be taking that trip again to East Grinstead. This time for a few days (5-14 – depending on pain!). I will be having my TMR surgery. I must admit, a fair amount of trepidation this time. I’m not unfamiliar to general anaesthetics, this will be my 10th! Yet for some reason, this time I’m a bit scared! I think it’s because I will be so far from home, and my wife won’t be there when I get back to the ward, which so far, she always has been. But mixed with the anxiety is a ton of hope. Hope that this will work, and I will be able to wear flo (my prosthetic) again. Even if it’s just some of the time! I’d even take 20% right now! I’ve accepted the fact (mostly!!) that I can not run again, and my sports will need to be slightly different, but I can’t accept never walking again.

The above photo was taken last week. Yep, I’m back out there, training for my first half marathon using my wheelchair. On the 5th of September I will be wheeling through Bridgewater in their half marathon. I can’t wait. Then who knows? Hopefully a marathon next! My wife will be running it too, although she will probably have time for a cup of tea and a nap at the finish line, by the time I get there!! But it’s all good fun.

So with the pending hospitalisation in mind, a few people have asked what the most important thing is for one to take into hospital. So I have thought of a few, which I wouldn’t be without.

1) Ear plugs. Hospitals are supposed to be a healing environment, but trust me, you won’t get much sleep, especially post operation. As an ex registered nurse, I can tell you, I was one of those annoying people who would wake my patient at all hours to take their blood pressure! To put in needles, remove needles, pop in tubes, remove tubes, change dressings, check your daily oblutions! You name it, the list is endless. Plus, unless your accustomed to communal sleeping arrangements, you can pretty much expect that half the room will snore! So, ear plugs are a definite necessity.

2) My portable dvd player and a ton of dvd’s. Why do I take this, in this technical age of tablets etc.. Well you may be surprised to know that not all hospitals will let you have their WiFi password, and the tvs can be hideously expensive, up to £20 for 3 days in some places. So as a fail safe, I take my own entertainment.

3) Your own snacks and Tea bags! If your like me, and allergic to gluten, you can never tell what food your going to get. Although I have to say, so far it’s been pretty ok, the snacks are pretty limited. When I’m in pain I struggle to eat, and when I’m nautious, even more so. So I like to have my haribo to hand, which is about the only thing I can stomach when pain and nausea come calling. Tea bags… well, I can blame Piers Morgan for that one. I never used to be a Tea snob, until one morning, whilst watching GMB, good old Piers mentioned he only drinks Yorkshire gold. So one day I decided to see what the fuss was about… Needless to say no other Tea bags will now suffice, and as a result I will be taking in my own bags for a proper cup of tea!

As for other bits and bobs, it’s up to you. I would of course recommend pants and pyjamas, and some good reading. I will be taking in the first part of my manuscript to continue the editing process, which never seems to end! Plus a couple of books to read.

So for the next few days, and for a few before, I am on strict isolation. The boredom is setting in… although I have lots of work to do, I miss riding my hald bike and wheeling. But not long now and if all goes well, I will be back to it. Have a great weekend all 😁

It’s a Neuroma!!!

Finally, after two years of saying that I have pain, other than my crps in my stump, I finally had an MRI. The results showed a neuroma and a second area of thickening around my stump. Finally, after being rebuffed, ignored, made to feel awful… I was right. So, I recieved a call from Bristol to tell me the news. They said that there was a few treatments, but we’re still reluctant to do surgery or even touch it because of the CRPS! This is despite the fact that it would seem that the Neuroma(s) are setting of my CRPS. People are so focused on not setting off the crps, that they are prioritising it over long term treatment, basically confiding me to my wheelchair for life! Luckily for me, I had my appointment in East Grinstead, and the amazing team there see things differently. They believe in treatment, with the realisation that my crps may get worse, but they inform and let me decide.

During my visit, I had an ultrasound, which was thoroughly explained, and had the consultant present. I then saw my consultant, Dr Tania Cubison. She was amazing. She explained everything. I saw videos, photos, and was told the actual facts and statistics of probability of recovery. I felt fully informed, which I have to say, I’ve never had before. I don’t know if it’s because I’m a nurse, or weather others have had such treatment, but at my local hospital, I’ve never had as good a treatment as I did at East Grinstead. After I saw my Dr, I then saw a anaesthetist, who was again very thorough, and explained everything. Now this is a big thing for me, as when I went in for my amputation, I was taken into hospital 4 days before the surgery to have a block by the pain Dr, who didn’t show up to do it! As a possible consequence of this, my CRPS came back! The anaesthetist resured me that he will show up, and couldn’t believe that someone, or a service would be so unprofessional. He plans to put in a block the day before the surgery, and then they will place two other blocks when I’m unconscious. He stressed the importance of doing this so that they can ensure it works, and doing it right before having surgery, doesn’t give you a gauge of weather it is placed correctly, which is what happened to me!

Above is a picture of a neuroma.

So then I was off to see a pre op nurse. They were also very nice, and seemed quite knowledgeable. The were very thorough. I have never had bloods taken before in a pre op assessment either. I have also never been made to feel so welcome. I have to say, I am very glad I will be going there for my surgery. The thought of going to the Roayl Devon and Exeter again, where they’ve ignored me, treated me like a sub human, and neglected me, wasn’t very favourable. So this should be happening in August, we think. The plan is to do TMR surgery on three of my nerves. There will be an approximately 8-10 inch scar on the back of my leg. I have been told to expect a hospital stay of 3 days to 2 weeks, and their goal is to ensure my pain is under control before they kick me out. Another refreshing change…

We have a plan… I couldn’t be more relieved, and grateful to my friend Maggie, who without her referring me to this amazing specialist Doctor, I would not be in this fortunate position. It is amazing that I’ve had to go so far away, just to be taken seriously, and to have treatment. It angers me, as I’ve worked at the RD&E for almost half of my life, including doing my nurse training there. I’ve been a registered nurse there for 14 years. Yet I received such diabolical neglect, that they were just going to leave me in pain for the rest of my life. I still have not received an appointment with the pain team, despite 2 years of urgent referrals being sent. This is how poor the treatment has been for me… having none! Anyone with a Neuroma will tell you, it is excruciating, as is CRPS, and one sets off the other.

All I can do now, is wait for the date. I couldn’t be happier with East Grinstead. Just wonderful.