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!
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 …
(*) 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 …
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.
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.
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.
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.
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!
Four years ago, I celebrated New Year’s Eve with a lot of optimism. 2014 was going to be the year of my 50th birthday. Both of my daughters would be graduating. The previous work year had been the most successful of my career and I’d been awarded a trip to Maui. We were also going to Bruges for a break with good friends from university. At the end of August we were going on safari in Africa.
All of these things duly happened during the year. They were all brilliant, life-affirming experiences. But I hadn’t expected to have to cope with the death of my mother, shortly after my own lymphoma diagnosis. Both of these events came right out of the blue, from left field – you can choose your own cliché if you wish!
I was fortunate to be diagnosed early. I’d spotted a small lump on the side of my neck that was getting in the way of shaving. I mentioned it to Jane while we were in Maui. She encouraged me to book a GP appointment on my return and he immediately referred me to hospital. I was fully diagnosed by the time we went to Africa that summer.
Lymphoma is the fifth most common cancer type found in the UK, yet awareness of the symptoms is patchy, even amongst medical professionals. Fortunately, organisations like Lymphoma Action are working tirelessly to improve awareness, diagnosis and treatment. Their video talks about the potential signs of the disease.
If you’re worried that you may be experiencing some of these symptoms, please don’t delay seeking help.
Meanwhile, I’m still holding on after transplant. My blood counts continue to drop, I’m unreasonably fatigued, but so far I’m not experiencing too many nasty side effects from the last week. I hope it continues like that for the next few days.
Yesterday remained fairly quiet. I was given a nebulizer in the morning as a precaution against pneumonia. Other than that, I spent most of the day sat on the bed or chair, doing very little. I’ve been asked to make my movements slowly and deliberately from now onwards, to avoid the risk of a fall. With my haemoglobin levels dropping, light-headedness and fainting from standing up too quickly is a real risk. Slowing down is not something that comes first-nature to me, but at the moment it seems like very good advice indeed.
I was sick last night for the first time in the whole treatment process since March. Ironically, it happened because I failed to swallow an anti-nausea tablet correctly and it lodged in my throat. Naturally, the nurse was there to see me make a complete arse of myself. But her compassion and understanding towards me was lovely. Such good treatment makes me feel very positive towards the world this morning.
I’m still reasonably side-effect free. I’ve been warned to expect the worst of the Melaphalan impact next week, so I’m trying to eat and drink as normally as possible at the moment. I always knew that days +4 to +10 were likely to be the worst. Taking one day at once, one hour at once, is the only way to approach this.
Before I left home on the evening of 4th September I spent some time in my garage, sat in my 7. I took photographs. I’ve used that experience to keep me motivated over the last few hours. At the moment I need to slow down, but I’m looking forward to the time when I can get back up to full speed again.
Transplant day went off smoothly. It was all complete by 1457, and I’ve been resting since. As the photo shows, unlike 50+ years ago, this time I’m a really ugly baby.
I had a good night’s sleep but have woken up to a bit of a grumbly tummy. Probably due to lack of food more than anything else, as chemo tends to put me off eating.
Thank you to everyone who has been sending me messages of support through the comments and in other ways. I’m somewhat overwhelmed by it if I’m honest, and I apologise if I haven’t responded. I have read every single message. Thank you.
The next couple of days shouldn’t be too difficult. However, day +4 to about +10 are likely to be tougher. But I feel as safe and prepared as I can be.