Transplant +98: The beast is soundly asleep and snoring

After a rather sleepless night, there was excellent news from the hospital this morning. I have almost normal blood again and there was no evidence of lymphoma on my PET/CT scan. In January I will start on maintenance rituximab injections, every two months for three years.

Next step - rituximab maintenance chemotherapy for 3 years and a return to being a productive member of society.
Next step – rituximab maintenance for 3 years and a return to being a productive member of society.

It’s not beaten, because MCL never is. However, the beast is soundly asleep and snoring ™ (*) which means I can return to being a productive member of society. I’m starting to feel good about myself again.

Thank you all for your support during 2018. And if you have any spare cash after Christmas, I’m certain that Lymphoma Action could make good use of it.

I am not defined by my scars, but by my incredible ability to heal

 

(*) Thanks Gail!

Transplant +97: Nervous times

In January, when I knew that chemotherapy for my lymphoma was certain, I wrote the beast is awake. Tomorrow I meet with my consultant to review the results from my recent PET/CT scan and blood tests.

I’m feeling rather nervous, but hoping that I can declare that the beast is asleep. A move to the final box on this sheet would be very welcome news.

MCL front line treatment pathway
MCL front line treatment pathway. Spot the typos!

I certainly feel good in myself, but I have the ‘relapse pathway’ printed out and ready, just in case. I’m hopeful that I won’t need to use it for a long time.

Transplant +75: Carsington Water

Carsington Water is a pleasant 30 minute drive from home. It’s somewhere I enjoy going to think, especially when it’s quiet. It was very quiet this morning, as well as being cold and rather eerie in the winter sunlight. It’s a good job the 7 has a heater – however inefficient. At least it keeps my legs warm while the top half of me is wrapped in a fleece, scarf, snood, woolly hat, driving gloves and a big coat.

Andrew Frost's wizard sculpture on Stones Island, Carsington Water
Stones Island, Carsington Water

This was probably the last excursion for Gnu this year as the weather for the rest of this week looks poor. He’ll be safely stored away and SORNed by 1st December for a couple of months.

Carsington Water from Stones Island, looking towards the dam. The water is as low as I’ve seen it for many years

I spent some time walking around Stones Island and reflecting on the last year. It’s one I don’t want to repeat in a hurry. Chemotherapy and a stem cell transplant is no fun at all. Worse than the treatment was missing out on too many social occasions – including work. But I hope that I’m now through the worst of it and that any relapse is many years away. Maybe something else will get me first after all!

Andrew Frost’s sinister wizard sculpture on Stones Island, Carsington Water

Having made appreciative noises at the sculpture, my twenty-minute walk became too cold to bear. So I did what any sensible person would do and headed to the Mainsail restaurant. My sausage cob (breakfast is served until 2.30pm – very decadent) and pot of tea were a bargain at £5.25.

I’m cautiously optimistic about 2019 from a personal perspective. Maybe even my head hair will grow back soon. I hope this optimism is better-founded than my Old Timmy’s Almanac predictions were at the start of this year.

Transplant +68: York

As part of my recovery from the SCT I’ve just returned from a long weekend in York. Other than a few day trips and a weekend there when my children were very small, it’s somewhere I’ve never spent much time. There was also a weekend at York University on an Open University management course in 1990. All of the smart students seemed to be WHSmith trainees. How times change. But I digress.

York was wonderful. We went in the museums and galleries, met friends and enjoyed time together. Some of my favourite experiences were:

Food & Drink:  OXO’s Restaurant. Now that I’m getting my appetite and taste buds back, this was a brilliant place to spend an evening. Well cooked and presented food, an excellent host and waiting staff plus a barman who made great cocktails. Non-alcoholic for me at the moment!

The mulled wine train at York Christmas market
There was also the mulled wine train at York Christmas market …

Culture & History: York has this by the bucketful, obviously. We enjoyed the Castle Museum, York Minster and the Jorvik Centre, but the stand-out for me was the Art Gallery. Specifically the Strata | Rock | Dust | Stars exhibition, which is there until 25th November. Agnes Meyer-Brandis’ installation, drawing on her Moon Goose project, is both charming and bizarre. I especially enjoyed the weathered samples of goose eggs showing how they crumble to dust over 500 years or so on the moon (*).

Trains: The National Railway Museum. Free entry (although there is a £5 suggested donation – still a bargain). We spent a few hours on Sunday here before catching the train home. The museum has lockers (£3 or £4) which are handy for overnight bag storage, making it an ideal final stop. The ride on Agecroft No.1 was an extra £4.

The railway ephemera in the collections room is as bizarre as the Agnes Meyer-Brandis’ Moon Geese. An encased cheeseburger package has pride of place in one of the cabinets.

The last cheeseburger
The last cheeseburger

Walking: York is an easy city to walk around, if you avoid the crowds. While we didn’t manage to walk all of the remaining walls, the view of the Minster was rewarding from near the railway station. I managed to clock up more than 30,000 steps in the 3 days we were in York. Thankfully, I seem to be making faster progress on the recovery front.

York Minster
York Minster

(*) Pedantic bit. Technically there is no weathering on the moon, as it has no air or water. However, a similar process occurs through micrometeorite impacts. But I’m not convinced that a goose egg would be dust in as little as 500 years, even so.

Is scientific knowledge about cancer controversial?

Today the British Psychological Society’s research digest has highlighted Lobato & Zimmerman‘s recently published research on how people reason about controversial (*) scientific topics. Their research asked participants to justify their position on evolution, climate change, genetically modified foods and vaccinations.

The researchers found that 34% of participants simply restated their thoughts with no justification. Of the remaining 66% who attempted a justification, 20% were subjective. Subjective justifications favoured personal experience, cultural identity, false reasoning and conspiracy theories over scientific evidence.

45% of participants said that no new evidence would change their minds for at least one of the four topics investigated.

This research is interesting because it questions the received wisdom that giving people more factual information about a topic will enable them to come to a valid conclusion. It could certainly explain why a ‘referendum on the facts’ about Brexit may still deliver the same verdict as in June 2016. Brexit, as the Prime Minister and her cabinet demonstrates, has become an article of faith.

Which brings me to the topic of cancer. Judging by some of the reviews on the Cancer Research UK Facebook page, scientific knowledge about cancer is controversial. Many of the reviews made me feel sad. Others made me angry. Some examples and the facts (even though it appears that facts may not be powerful for some):

Cancer research has NO intention of finding a cure, merely conning people out of money on the premise of such a possibility … You manufacture antiquated TREATMENTS that eventually kill the sufferer! More patients die from CHEMO than cancer!

The facts:

In the 1970s, only a quarter of people diagnosed with a cancer survived. More than half now survive for at least ten years.Novel chemotherapy drugs and other treatments developed through research programmes are responsible for this dramatic improvement in survival rates.

Cancer Research UK is a scam!!! Established 1902 and stil no cure? Makes big pharmaceutical companies billions so, ever wondered why there’s no cure?

The facts:

As cancer is not a single disease, it is unlikely that there will ever be “a cure” for it. Many different approaches will be required. Cancers that used to kill quickly in 1902 but now have a five-year survival rate of around 100% include cervical cancer, prostate cancer, many thyroid cancers and early stage breast cancer. My own non-Hodgkin lymphoma has a rapidly improving survival rate thanks to improved chemotherapy drugs, stem cell transplants and immunotherapy.

Why give cancer patients fatty food and sugar WHEN cancer thrives on sugar.

The facts:

There’s no scientific evidence that removing sugar from your diet improves your survival chances.

And then there’s the comments from the green crayon brigade that really aren’t worth any response at all, but just make me angry.

A cancer charity that doesn’t tell you what causes cancer, or how to cure it. A low fat plant based diet both prevents and cures cancer. Please watch **** and **** and stop supporting corrupt charities like this one.

… what in hell are you researching there’s a cure already it’s called marijuana …

Scare tactics 1 in 2 people will get cancer? Smoking is down, Drinking down yet cancer rates are up..really why don’t you just say everyone will get cancer so just give us all your money.

The cancer research shop window displays have no mention of the ww1 100 years memorial. No poppies. No ” lest we forget” message. Nothing.

THE CURES ARE KNOWN BUT HIDDEN. VITAMIN B17, CBD OIL ETC

Green crayons
Green crayons for use by cancer research conspiracy theorists

 

I could go on, but there’s only so much stupidity I can cope with in one day. Nick Clegg is certainly going to have his work cut out cleaning up fake news or whatever it is he’ll be doing at Facebook in 2019.

 

(*) The participants were 244 American university students and staff, which may explain the inclusion of evolution as one of the controversial topics.

Transplant +56: The check up

Today I had my first check up back at Derby after my stem cell transplant. My blood test results were reasonable, if a little on the low side. (Haemoglobin 125 (normal is 120-180), Platelets 116 (150-450), Neutrophils 1.03 (2.0 – 7.0)). This means I’m still neutropenic, but at least I won’t bleed to death 🙂 . I have a shiny new stock of Aciclovir and Co-Trimoxazole to help fight off any bugs I might pick up between now and Christmas. Physically I appear to be getting there, but I’m still feeling very fuzzy mentally. I’m hoping that I’ll start to feel a little sharper as my blood counts improve.

The consultant has scheduled a PET/CT scan for mid December, which will show if I’m still in remission. I’ll get the results the week before Christmas at my next check up. I hope Santa thinks that I’ve been a good boy this year. My (not) fit note has been extended until the end of January. Hopefully my December test results will suggest that a phased return to work will be all right early in 2019.

All being well I’ll also start maintenance chemotherapy with Rituximab injections in the new year. These will be given two months apart, for 3 years. When I started on my MCL journey maintenance chemotherapy wasn’t widely practised, as the results from studies were inconclusive. However, more recent evidence suggests that the benefits of maintenance chemotherapy after a stem cell transplant for MCL outweigh the disadvantages for people in my age group.

I’ve one big Christmas wish for Santa this year. I’d like my head hair back please. I know it won’t improve my looks, but at least I won’t shiver with every little draft that comes my way.

A warm hat is essential after a stem cell transplant
A warm hat is essential after a stem cell transplant.

Transplant +45: Gentle exercise

Since I last wrote on T+30 I’ve continued to make progress. I’m still tired much of the time and if sleeping was an Olympic sport I’d be a certainty for the gold medal. However, it feels as if some kind of normality might not be that far away.

Physical exercise

This is the easiest to measure. Since T+30:

  • I no longer need my walking stick.
  • I’ve managed to drive both the Alfa and the 7 a couple of times, although not very far.
  • I spent a couple of hours at the Donington museum.
  • I’ve walked around the woods on Oakwood (several times), Kedleston Hall and yesterday spent some time walking around the gardens at Chatsworth (when I wasn’t eating cake, naturally). My daily step count has gone up from around 1,500 to averaging 5,000 or so. Yesterday I exceeded 8,000 for the first time in two months. My resting pulse has continued to come down (73 today), although it’s still a little above my mid-sixties norm.
Chatsworth - the view from the grotto
Chatsworth – the view from the grotto

Mental exercise

This is a little harder to measure, but since T+30:

  • I’ve built a surveillance camera for the driveway. This was motivated by the possibly paranoid belief I hold that an intruder tried to get into the house the first night I was home from hospital. It consists of a Raspberry Pi 3B+ inside a custom case, running MotionEye on Raspbian. (I originally tried MotionEyeOS, but it proved to be unstable). So far the only intruder its spotted is a spider.

Transplant +30: Slow going

Before my stem cell transplant, I was told that recovery would take around 3-6 months. If I’m honest, I chose not to believe it as I recovered from most of my earlier cycles of chemotherapy in about 2-3 weeks. After my 6th cycle of cytarabine and rituximab I even felt well enough to go away on holiday for a week. I enjoyed walking, dining out and being terrified on the Heights of Abraham cable cars. Anyway, I’m now at the point of conceding that 3-6 months recovery is probably going to be about right. That’s a long time. Definitely slow going.

A month on from my transplant and some days (like yesterday) are incredibly tough. Definitely worse than anything I experienced during the first six rounds of chemo. Shortness of breath, crushing fatigue, being unable to eat very much, nausea … but this is fairly standard fare by all accounts. Today has been better, but I’ve not moved very much. Reading the gas and electricity meters took real effort to achieve. I’ve not left the house (except to walk to the post box or nearby shop) since I came home from hospital. I’m worried that I’m becoming a hermit. Driving a car again feels like a distant ambition.

My Fitbit agrees that the process has taken a lot out of me. My resting pulse is still in the high 70s/low 80s, when normally it’s in the mid to high 60s. No wonder I feel tired and am finding it difficult to put weight back on.

Resting heart rate graph
My heart is working harder to try to make up for the low levels of haemoglobin, platelets and white cells I currently have.

But on the positive side I’m still here. I am getting better – albeit more slowly than I’d like. It does seem to be a case of three steps forwards and two back, but that is progress nonetheless.

Transplant +18: Delete blood cancer

Today is the last day of blood cancer awareness month 2018. DKMS is a charity which maintains a register of potential blood stem cell donors to help fight blood cancer. While I was fortunate to be able to undergo what is known as a autologous stem cell transplant – one from my own cells – others require donor transplants to have a second chance at life.

Blood Cancer Awareness Month

Only a third of donor transplant candidates find matching donors within their own family. In the UK, this leaves 2,000 people a year who depend on other donors. As only 2% of the eligible population is currently on the register, some 40% sadly fail to find a matching donor.

What can I do to help save a life?

This three-minute video explains how to become a potential blood stem cell donor and what’s involved in the process.


If you’re happy to go ahead, simply check your eligibility and register.

What if I’m not able to become a potential donor?

It costs approximately £40 for every new potential donor to be added to the register. If you’re unable to register, then please consider making a donation to help cover costs.

What if I don’t live in the UK?

Blood stem cell donors are needed worldwide. DKMS also operates in Chile, Poland, the United States and Germany. Please seek out your nearest local charity and ask to become a potential donor.

Transplant +15: Line out

I returned to the hospital this morning for a blood test, with a view to them removing my Hickman line. The results were encouraging (Haemoglobin 99, Platelets 33, Neutrophils 0.5), especially after I’d felt absolutely shattered the day before. So the line came out. Another small milestone on the road to recovery. I’ve been given a course of three more gcsf injections to help get the neutrophil count back up.

My appetite is improving. I enjoyed eating half a large pizza for tea today. That’s a good thing, as it looks as if my final ‘low’ weight will be 82.4kg … just 9kg under what it was before the stem cell transplant started.

I’m in good spirits, but very tired. Over the next few days I’m hopeful that the tiredness will ease a little and I can start to do some gentle walking. I’m not ready for the Monsal Trail, but hopefully it won’t be too long before I am.

The spectacular Headstone viaduct, from Monsal Head, April 2017.
The spectacular Headstone viaduct, from Monsal Head, April 2017.