End of treatment phase 1

The fitting of my Hickman line and 6th cycle of chemotherapy went well last week. I’m now rapidly approaching the end of the first phase of treatment. It’s been successful! All that’s left is a day unit appointment tomorrow for my last Rituximab infusion (held over from the first cycle of chemotherapy).

I’m also part way through mobilising my stem cells for collection next week using Lenograstim injections. These stimulate the body into making large numbers of new stem cells. My consultant tells me that they need to collect around two million per kilogramme – significantly more than are present naturally.

Lenograstim
Lenograstim – Manufactured by Sanofi in France. I’m glad that I’m taking this now rather than waiting for lorries to clear endless customs lines next April.

These injections are fiddlier than the earlier ones I’ve had to administer to bring my white cell counts back up. Each consists of two syringes, but you have to mix the Lenograstim yourself rather than it coming pre-made. It’s not difficult to do this – just time-consuming. As the syringes don’t have a self-retracting needle, you need a steady hand. After four days of mixing and injecting I now consider myself to be an expert 🙂

There’s a chance that I may be lucky and the stem cell harvest will work first time. Mechanically, a stem cell harvest is straightforward – provided I can manage to sit still for five or six hours while plugged into their machine. The haematology unit in Nottingham said they’d had a 25% first time success rate last week. However, they will keep trying all week if not – they guarantee(*) to sort me out by Friday at the latest.

I’ve been totting up what this whole exercise is costing. I suspect by the time that I’ve had my transplant, the NHS will have spent a few hundred thousand pounds on making me well. I’m so grateful not to need to go through the endless fights with insurers that so many have to in other countries. It means I can concentrate on getting well and returning to being a productive member of society.

Today, on the 70th anniversary of the start of the NHS, I shall be raising a glass or two in thanks to the great Liberal, William Beveridge. His 1942 report made all of this possible.

 

(*) I’m guessing that this guarantee may come with terms and conditions …

The tale of Punxsutawney Neutrophil and his friend, Punxsutawney Stemcell

Monday 9th July

Early start from Derby to arrive at Nottingham City Hospital for around 0800. The haematology day case unit opens at 0815 and I join the queue to report my presence. Name, date of birth, first line of address ritual completed, I’m shown quickly into the stem cell unit and introduced to Pooh, the centrifuge. However, they need to check my blood first for red and white cells and if they’re at an acceptable level, for the CD34 glycosylated transmembrane protein – it indicates if there are any stem cells to harvest.

Minutes later the initial blood test results come back. They’re not pretty and explain the general lack of energy, breathlessness and grumpiness I’ve felt over the weekend. Almost zero platelets, precious few neutrophils and very low haemoglobin.

Blood test resultsThey don’t bother with the CD34 test and instead I’m given my first ever blood transfusion – two units of the finest irradiated A+ from Sheffield plus a bag of platelets. This is then followed by a double dose of Lenograstim.

I’ve packed an overnight bag ‘just in case’, so I decide to stop in the Hospital Hotel. A good choice – I manage to get a decent amount of sleep, even if it’s impossible to get more than beans on toast or a very well done jacket potato anywhere on the hospital campus after 6pm.

Tuesday 10th July – Groundhog day

After breakfast in the hotel (cornflakes, orange juice, toast and marmalade, tea) I walk the 10 minutes back to the haematology unit. Name, date of birth, first line of address ritual. Bloods taken.

This time the results are better – Punxsutawney Neutrophil(*) sees his shadow as the count is above 2.0, I have platelets but I’m still too anaemic to be put onto a centrifuge. They send off for the CD34 score anyway – it comes back as 2. 10 is the minimum required for the harvest.

Time for another two units of blood and another double dose of Lenograstim and home.

Wednesday 11th July – Groundhog day

The light traffic on Nottingham’s roads after the England World Cup defeat to Croatia means that I get to the unit more than half an hour before it opens. At 0815 the name, date of birth and first line of address ritual plays out again. This time my blood test results are very good (and I can’t believe how well I now feel compared to Monday), but the CD34 indicator is only 5.9.

Home early with another double dose of Lenograstim.

Thursday 12th July – Groundhog day

0815. Name, date of birth, address. Blood tests. Everything excellent – but the CD34 count is 9.66 – 0.34 below the level required for me to go on the centrifuge. The big guns are called out in the shape of a Plerixafor injection (cost to the NHS – a snip at £4,900) that has to be given at 5pm. Oh, and another double dose of Lenograstim injections for good measure.

Jane and I head off into Nottingham for lunch. It’s the first time I’ve been in a big crowd of people for weeks and it feels slightly disorienting. Lunch at Bistrot Pierre is a novelty – I enjoy my Boeuf Bourguignon followed by crème brûlée (I am a child of the 70s) but Jane’s salad is pronounced disappointing. Back to the hospital for the Plerixafor, with a side dish of double Lenograstim.

Punxsutawney Stemcell will definitely see his shadow tomorrow. Or today. Time has ceased to have very much meaning this week.

Friday 13th July – Groundhog day

0815. You know the first bit by now. The CD34 count comes back above 25 so we’re good to go. Punxsutawney Stemcell has now also seen his shadow and the wait is over. I’m plumbed into a centrifuge called Jessie (much to my youngest daughter’s delight) via my Hickman line. Around 5 hours later there’s a bag of plasma and stem cells. It’s not quite over as they need to count them – 2 million will make for a successful harvest.

I’m called at home just before 5pm. 2.86 million stem cells have been collected. Groundhog day is finally over.

Plasma and Stem Cells
The 2.86 million stem cells are in the pinky-red liquid.

Now, as they say, comes the difficult bit. But September will take care of itself. For now, I have a few weeks to get some strength back and prepare for the final challenge.

 

(*) With thanks to Gail for coming up with this pun!

Transplant -7

I was admitted a day early to hospital for my stem cell transplant, so it’s now transplant -7, or T -7. Today has been relatively straightforward – the usual whirl of form filling, new people to get to know and an hour’s infusion of bendamustine. Tomorrow looks similar.

My room does have a view, with one aspect onto a terraced area for other cancer patients to exercise in. I say “other”, as I’m not allowed outside of my HEPA filtered, air-conditioned room when my blood counts start to fall, as they inevitably will. There’s a giant chess set on the terrace. I’m wondering if I put a large sign up in my window inviting a challenge whether I might get a game, remotely.

Chess on the terrace

But I’m not very good at chess, so I’ve just started out on a “Shoestring” DVD marathon instead. Four episodes of the first series down so far. For a nearly 40 year old drama serial, it still holds up really well. It’s fun playing spot the guest star too – Stacy Dorning (from The Adventures of Black Beauty) was in the first episode, “Private Ear” and Gordon Kay in his pre “Allo Allo” days was in “Higher Ground”.

If you, my friends and readers, don’t mind I’m going to try to write something here every day until I’m released. I say released, rather than discharged, as I’m in room 6 (and coincidently have brought “The Prisoner” box set with me). Rover is just outside the door, so I’m going to have to stay put. Don’t worry if I miss a few days – I’m expecting to be pretty unwell for a while. Science says my treatment will be worth it in the end, and I feel that it will be worth it too.

Be seeing you.

Transplant -6: Horse Chestnut – all your conker are belong to us

Just to the left of the terrace is a beautiful horse chestnut tree. The leaves are on the turn and it has a bumper harvest of conkers ready to be collected soon. Squinting into the distance, it looks as if the whole of the hospital campus is ringed by them. Security must have a nightmare keeping local youths (and somewhat older lymphoma patients who should know better, ahem) from throwing things into the trees to knock them down. By the time I get out of here I think they will be just about ready. The conkers, that is. Not security. No security guards are ever ready for me. All your conker are belong to us.

So, hot tip, don’t park anywhere near them at the end of the month if you don’t want me to damage your pride and joy with my conkering sticks.

Horse chestnut tree
Horse chestnut – all your conker are belong to us

In other news, I’m not feeling too bad after the first round of Bendamustine yesterday. My next is scheduled for 4pm this afternoon. Blood counts are behaving themselves at the moment. Today is also poo sample day – lovely.

 

Transplant -5: Laminated notices

As I’ve just about exhausted the possibilities of taking photographs from my window, today we take a look inside my prison cell hospital room. At some of the many laminated notices. There’s one which isn’t laminated, but you’ll have to read on to find out where it is. I am a master of suspense.

I’ve moved the first notice, as it was on the outside of the bathroom door, rather than the inside. The grammar doesn’t seem quite right, but the intent is clear. It’s there to get around a user interface design issue. There’s no need to have a lock on a bathroom door in a private room for one. Everyone respectfully knocks on the main room door before entering anyway.

Don't lock the bathroom door

The second is my favourite notice in the room. It’s really useful. I’ve been doing my exercises every day and they are more exacting than they look for someone in my condition. However, I’m already up to 3 repetitions. I have a walking course around my room that according to fitbit is 30 steps per circuit.

Dear notice, I promise that I’m going to do everything in my power to make sure that I do go home.

Exercises

The final notice for today (there are more, but I may save those for another day) is the only one which isn’t laminated. That’s because it’s in the shower, obviously.
Shower

On the chemo front, the second infusion of Bendamustine went off with out a hitch yesterday. Blood counts are still good. I’m sleeping fairly well, but getting noticeably more tired throughout the day. Thank you to everyone who’s been keeping me distracted by playing “words with friends”. I’ve a horrible feeling that I’m already addicted. The “Shoestring” DVD box set marathon continues. I’ve got as far as “Stamp Duty” – which uses a blue Skoda S100 or S110 in the plot. I learned to drive in one of those a couple of years after the episode was filmed. Except mine was yellow, and naturally, was called gnu.

I’m onto the slightly harder chemo now – 15 minutes of cytarabine, followed by two hours of etoposide this morning. I get a further 15 minutes of cytarabine this evening.

Transplant -4: Ranty Saturday

Yesterday afternoon I was rejoined at my bedside by grey Eeyore. Quite rightly, Jane decided he was a little too unhygienic to be in here at first. He’s now been through a full wash and tumble dry, so although he smells beautiful, he’s understandably a little ranty today. Even though the nurses love him.

Ranty grey Eeyore
Ranty grey Eeyore

His mood has rubbed off on me a little this morning. It’s not nine thirty yet and I’ve already had two good rants. The first was while I was chatting to my bed makers. Nothing to do with this hospital however! I was reminded of the time I was visited on the ward in Derby by a member of their trust board. I was more than happy to speak to her, until I realised that she simply seemed to be on a fishing expedition for complaints. Let me record now, that at both Derby and Nottingham, my treatment has been exemplary and the staff, at all levels, are amazing. The only time I’ve felt secondary is when being interviewed by that Derby trust board member. I wish I’d have taken it further at the time to be honest.

So that was my first rant. My second is on twitter, so you can follow the thread if you’d like to read it. Warning – contains NHS Brexit ranting, but if you would like to re-tweet it for me it would make me very happy!

In chemo news, I’ve just finished my third bag of cytarabine. I’m about to start bags three and four of etoposide. I’m still “functional” and putting on weight. 92.5kg this morning, although that’s probably mostly due to all the liquids that I’m having pumped into me. My appetite is still OK, but it’s more of a struggle to eat than it was a couple of days ago.

I’m wearing my happy socks (thank you to the Doyles! ) – maybe I will become less ranty as Saturday progresses.
Happy socks

Transplant -3: Soggy Sunday

Four days of chemo down, three to go including today, and I’m definitely feeling soggy. I’ve just started on my 5th bag of cytarabine, with two more of etoposide to follow this morning. My platelets are clearly suffering, as a small nick with my razor this morning didn’t stop bleeding for a while. Even though my stubble is still growing I’m not going to shave again now. All of my hair should start to fall out again soon, anyway.

I think that I’m unusual in that I haven’t minded my hair loss, nor the process of just letting it fall out. Somehow, shaving my own head would seem like a bit of a defeat for me. I’m not prepared to surrender that easily. I absolutely understand why people do preempt hair loss by shaving, especially if it’s long. I think I would too. Fortunately my hair is still short and thinning so I can get away with it. I’m glad we all take on this disease in our own way.

Just before it got dark yesterday evening it rained. I took this photograph when I was feeling even more soggy then than I do now. Being confined here made me want to run outside and feel the rain, but of course I couldn’t do that. A short while afterwards, I saw a young girl with her father playing chess on the terrace. They were having a great time, despite the weather. I hope whoever she was visiting recovers well.

Rainy Saturday at Nottingham City Hospital

Something else which is soggy this morning is the only unlaminated notice in my room. You remember, the one for the cleaners in my shower. It now looks like this:

The shower notice is on its way out

I’m now certain that I’m going to outlive it. A few well-directed jets of water should see its demise in the next couple of days!

Roast beef and Yorkshire pudding is on the menu for lunch. I’m not sure I’ll be able to eat very much of it, but I shall try. And maybe instagram it (tjholyoake, seeing as you’re asking) as well.

Transplant -2: The difficult bit approaches

Today marks the last day of my cytarabine / etoposide infusions. They’ve not been easy to cope with, but neither have they felt too overwhelming. The main problem with the etoposide infusions is that they’re large – 2 litres over 2 hours, as I’ve had two bags per day. It’s a real faff unplugging the pump each time i need to relieve myself. It unsurprisingly makes me feel bloated, but I’m told by Jane that I’m fortunate not to feel like that every month. She’s right, obviously.

The volume of chemo drops sharply to tomorrow, but it’s the turn of the scary Melphelan to make an appearance. Definitely the difficult bit as far as chemo goes, due to the almost certain side effects.

There’s definitely no turning back from the transplant now. There wasn’t really after I started on chemotherapy back in March, but it’s only recently the enormity of what I’m going through has started to sink in. The transplant is there to rescue you from the effects of the chemo. At the moment, my blood cells, of all types, are being destroyed by it. The Melphelan will also destroy the stem cells in my bone marrow.

Without stem cells, you’re unable to make new blood cells. The result of that happening is inevitable. To stop me from dying, they’ll give me back the 2.8 million cells they harvested from me in July. They’ll make their way into the bone marrow and in a few days time will start producing new blood cells for me. My blood counts will recover. But in the meantime I’m going to be dependent on blood transfusions and intravenous antibiotics, 24 hours a day. If you are a blood donor, thank you for your support.

Hospital life ticks along. They run a well-oiled operation here. It’s very impressive, especially when I cast my professional ‘business process’ eyes over it. The complexity of what they’re doing and the range of patients they do it for is astounding. If someone at a retailer tells me that they have the most complex operations in the country again, I shall furrow my brow, squint my eyes and say “yes, but let me tell you about how the NHS treats Lymphoma patients!”

I promised a photograph of yesterday’s lunch to my instagram followers (tjholyoake). I followed through with that promise, naturally, but in case you were curious and don’t do instagram, here it is. It was delicious, even if Greg and John on MasterShout would have disapproved of the presentation.

NHS Roast beef and Yorkshire pudding
NHS Roast beef and Yorkshire pudding, with potatoes, carrots and savoy cabbage. And gravy. Lots of lovely gravy.

Transplant -1: Authentic

A favourite assignment on my masters two years ago was one that looked authentic leadership. It wasn’t because I have any love for the positive psychology movement and the cults it spawns, particularly through management gurus.

Instead, the assignment gave me an opportunity to critique it. There was one paper in particular that I read at the time that summed up the issue. Authentic leadership is designed to set the good of organisations above the personal good of the leader. Even if the leader is passing on bad news to their team, they are meant to find the positive side, as to not do so would be inauthentic to the organisation. Or some nonsense like that.

Of course, that approach has huge potential to damage leaders who, by being “authentic”, are actually being inauthentic about their true feelings. My advice to anyone seriously considering an authentic leadership programme in their organisation is simple – don’t fall for it. Transformational and transactional leadership approaches have all of the benefits with none of the personally damaging baggage.

That’s a long preamble to today’s missive, but I felt it necessary. Many people tell me I’m brave to be going through lymphoma treatment. Some days I do feel very positive, but it’s not really bravery. It would be inauthentic for me to believe that I’m brave, as the alternative to treatment is far worse.

So I’m not going to pretend that I didn’t have a tough day yesterday. I did. And today frightens twenty shades of crap out of me. I hope you can understand. There will be light at the end of the tunnel, I will get out of the hole … or whatever metaphor you feel comfortable with. But today, I just want to put it on record that it would be inauthentic for me to say everything will *definitely* be fine. It probably will be, but I simply need to acknowledge that realism, rather than fake authenticity, is more important to me right now.

Eeyore has no such problems. He’s found my blood pressure monitor and made a few adjustments to it. His stuffing pressure is just fine he tells me, but he can’t find his pulse. I didn’t have the heart to tell him that he doesn’t have one. I told him to look on the bright side instead. But that’s just me, being authentic 🙂

https://www.tenpencepiece.net/blog/tag/stem-cell-transplant/
Eeyore’s not worried about his stuffing pressure.

Transplant day 0: Second life

I’ve made it through the night, despite not much sleep, as I’ve been constantly hooked to a drip since 10am yesterday, to counteract the effects of the Melaphalan. I feel rather woozy – rather like it felt to fly to Australia in economy some years ago.

Today is transplant day. I’m scheduled to receive my stem cells back at around 2pm. It genuinely is a second chance at life. For the next few days, as my old immune system withers away and the new one starts to take shape, I’ll be as helpless and dependent as any baby. After treatment is complete I’ll even have to undergo all of my childhood vaccinations again, as there’ll be no trace left of my original ones.

Me on my first day 0.
Me on my first day 0.

Thank you to everyone who has supported me through this. Family, friends, colleagues, the astounding NHS … and of course, my beautiful wife, Jane. I love you all.