Transplant +12: Home

I’m home.

In the end they decided not to remove my Hickman line as my platelet count is still marginal. I’ll be back for an outpatient appointment on Thursday. My bloods will be checked again, and the line removed assuming all is well.

It’s been a positive experience. Not something that I wanted to go through, nor would I wish it on anyone else. But yes, a positive experience.

Time to recover and build my strength back up. It’s likely to take a few weeks, but I feel in reasonable shape to make a good start to my second life.

Conkers

Conkers – a souvenir of my time in hospital. They’ll be used to repel all the spiders for the next year!

Transplant +11: Home time?

Yesterday’s blood test results were hugely encouraging. Haemoglobin was up to 110, platelets 35 and … I Haz Neutrophils! 0.8, to be precise.

The threshold for discharge is platelets above 30 and neutrophils above 1.0. My blood samples have just been taken, so there’s a possibility I may be discharged today. If not, it will almost certainly be tomorrow. A 19 or 20 day stay, against a more usual 21+. After all of the problems I had earlier on this week, I can scarcely believe it.

I’m not going to miss being confined in my room when I leave, that’s for sure. I’m looking forward to breathing non-filtered air again and knocking a few conkers of the trees outside the ward. But I will miss the people who have been looking after me. They are a credit to themselves, the hospital and the NHS – without exception. Like many wards, they’re under staffing pressure a lot of the time, they deal with some very poorly people on a daily basis and yet their care and compassion is amazing. If there was such a thing as TripAdvisor for hospital wards, this would get a 5/5 from me!

Transplant day

Transplant day

I will write again once I’m home. In the meantime, if you’ve enjoyed my missives from room 6, why not make a small donation to the Nottingham Hospitals Charity? You can choose what your donation goes to support, if you wish.There are numerous ways to donate, including by text.

Thank you.

Transplant +10: Reaching for normality

Last night saw my final dose of IV antibiotics administered. The blood cultures they took from me a few days ago grew nothing nasty and my temperature has been nicely in the normal range ever since. I’m still being given drips to protect my stomach, but these are short in duration. I’m slowly reaching for normality again. My Hickman line will be removed before I leave here – another sign of things returning to normal. It will no longer be needed to accompany the “Boom-ooh-yatatatah” of the medicine pump.

However, I’ve still quite a way to go before I’m ready to resume my place in the world. Fatigue is nearly always a problem for the first few weeks. I have to get some strength back as I’ve lost around 7 or 8 kg since I was admitted on September 4th. I’ve definitely lost what little muscle tone (please don’t laugh too loudly Ben) I had. Maybe I should take on the services of a personal trainer … I know a couple quite well, and one doesn’t live too far away from me. Perhaps in my second life I’ll become a gym bunny.

I’m going to take things very steadily. Nothing would waste all of the effort expended by the NHS faster than me overdoing it. I need to find my limits, they should improve over time, but I have to be sensible about things. If I can get back in the 7 by the end of October that would demonstrate to me that I’m making physical and mental progress.

The mental side of cancer is often neglected. Fortunately, my psychological training gives me a number of tools that I can use on myself. I haven’t found the emotional side of the original diagnosis and my eventual treatment too traumatic, so far. It helps me to talk though – to other people going through the same experiences and to my friends out here in ten pence piece land. You are all my therapy – thank you for putting up with me!

At a crossroads, trying to find my way back to normality.

At a crossroads, trying to find my way back to normality.

Transplant +9: You little beauties!

Yesterday lunchtime I was given the encouraging news that my white cell count had started to move up slightly from zero, where it had been for a few days. My stem cells are clearly little beauties, as that happened slightly earlier than is normal. Today’s blood samples were taken at 6am. I’ve been waiting with high anticipation to see the verdict.

The consultant has just been to visit me and the encouraging trend is continuing. My total white count is now 0.4. My haemoglobin is stable at 88 and my platelets are back up to 30 (having been in single figures 72 hours earlier). There’s still a way to go before I’m fit for discharge, but there is an outside possibility that could happen as early as Sunday. Realistically, I’m steeling myself to be here until Tuesday. That would match the predicted 21 day stay I’d been given before admission.

I can’t tell you how happy I feel. It’s like Christmas with foot-long pigs in blankets ready to eat with lashings of cranberry jelly (*).

Because I’ve not been shaving to try to minimise any issues from nicking myself, I’m hairy in all the wrong places and losing hair from where I’d like to keep it. I am Mange Man. Suggestions for my potential superpowers are welcome …

Mange Man

I wonder what my superpowers are?

(*) I hear that Aldi have these on their Christmas offerings. This news immediately enraged the more traditional of my daughters, Jessica, who believes that the best bit about pigs in blankets is being able to eat 50 at once. She may be right …

Transplant +8: Grateful and demanding better

Another night, another set of blood transfusions, antibiotics and iv fluids for which I’m grateful. I feel stronger again today. However, lack of sleep over the few days means fatigue is kicking me to Devon and back.

I’m also grateful that my MCL treatment has been possible at all. As a rare cancer, it was only identified as a specific sub-type of B cell lymphoma around 25 years ago. Survival times were short – typically less than 3 years. The introduction of the Nordic Protocol Chemotherapy regime followed by an autologous stem cell transplant has subsequently improved survival times. International research and cooperation,  particularly within Europe, is directly responsible for the improvements. However, by the time I am well again, it will have been something like 9-12 months since I started treatment on an unseasonably snowy day in March.

None of my treatment would have been possible without research. Because MCL is rare, that research has required funding and coordination across the world. New ways of treating MCL are showing promise. In particular, something I don’t claim to understand known as CAR-T offers a potential cure, at a far lower physical cost to the patient than the treatment I have had.

Lymphoma Action is the specialist UK charity supporting people with lymphoma. They provide a vital voice for the patient. I want to help them demand better for all of us in this position. I know that any donation you can make to them will be gratefully accepted. It will be used effectively to support people like me.

The best way to donate to Lymphoma Action is directly. There are a range of options, including by text. If you’ve found the blogs on my stem cell transplant informative or entertaining in any way, could I encourage you to make a small donation please? If everyone who has read my posts over the last couple of weeks were to donate the cost of a posh coffee, then we would collectively raise a few hundred pounds for them very quickly indeed.

Thank you. I was a cute baby 🙂
I was a cute baby

Transplant +7: Pulling an all-nighter

Good morning! Following some unusual side-effects to treatment yesterday, I’m pleased to report that I seem, for the moment at least, to be turning a corner. Yesterday felt like the whole team went up at least a gear or two to make sure that I was supported. I’ve never spent so much time talking to haematology consultants and doctors as I did yesterday.

Anyway, my side of the bargain was that I needed to pull an all-nighter. I haven’t done one of those for some years (My friend Matt Smith will remember one in particular) … and in the end, my part was mostly to sleep through it. Since 9pm yesterday I’ve had two infusions of tranexamic acid (the second is currently underway at 6.15am), two units of red blood (for those that don’t know, a unit takes approximately 2 hours to be transfused) and intravenous antibiotics.

It hasn’t helped that one of the inevitable chemo side effects, diarrhea, has also kicked in at the same time. But at least I’m now an expert in using a commode,  as they’re not keen on me moving around too much at the moment in case I have a fall. It’s a brilliant device, and I feel that every home should have one. I may invest in one myself when I get home for those days when I really can’t be bothered to walk 10 metres to the bathroom. Or not … !

The real test of processes is when they have to veer off the “happy path”. That happened here yesterday, and the hospital’s exception handling was executed impeccably.

Hartington signal box

Which lever would you pull to make sure the train stayed on course?
(Photo taken at Hartington Signal Box on the Tissington Trail, August 2018)

Transplant +6: Follow the lights

The storm continues to rage around me, but I’m comfortable. Lots of drug infusions and blood transfusions are helping. Because my platelets had dropped below 10, I’ve had a transfusion of those this lunchtime. I feel rather better than I did first thing. Nausea is proving to be a bigger problem than it usually is for me, but the platelet transfusion should help with that as well. I’m writing this while nibbling away on tiny pieces of fruit, with a fluid drip clicking away in the background replacing some of the salts I lost earlier on. I’m definitely comfortable.

I took this rather blurry picture on the Monsal Trail in August. The way is lit, but you can’t see the end of the tunnel as it curves away to the right. This seems like an appropriate metaphor for where I find myself today.

Follow the lights

Follow the lights

Transplant +5: The storm

The storm arrived in the early hours of this morning. I was sick and then developed a temperature of 38.3. The staff here quickly took various samples from me and I was given a chest X-Ray. That took three attempts as I appear to have very large lungs. The person who took it asked if I was a runner. I was honoured and amused in equal measure.

The impact of all of these people working so effectively around me has calmed the storm down. My temperature is still above normal, but the treatment seems to be working.

Your good wishes for the staff here and me would be hugely appreciated today. I am not in a good place, but I am in the right place.

Transplant +4: Down the dip

I’m officially entering the “dip” days now. It’s the point at which I have zero neutrophils and am likely to suffer most from the side effects of the chemo. I felt pretty unwell last night just before I went to bed, but the problems passed and I got a reasonable night’s sleep. At the moment, +4 feels like +3 – definitely not great, but very bearable.

Ever since the staff here began referring to these next few days as being the dip, I’ve had an earworm. So I’m going to share it with you, because it’s a great song. I’ve been picking through the lyrics, and they feel relevant too.

Some time in 1982 or 83, I saw Aztec Camera at a Warwick University ball. They performed in what was then known as the Rootes Workroom (I think it’s part of the Chancellor’s Suite these days). In the 80s, this was where you went to claim your grant cheque, take exams, heckle at political hustings and other staples of Warwick life. It was a curious concert venue, as the roof could only have been about 12 feet high. It made for a hot, sweaty environment and I still remember Roddy Frame complaining about it. You could barely breathe in there.

I’m certain he sang this song, as it was on their album High Land, Hard Rain. It had just been re-released (I think!) by a larger label than Rough Trade, their original record company. The YouTube video below looks to be contemporaneous. Enjoy!

 

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