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!

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 …

Brilliant Mistake

Elvis Costello

I’m listening to King of America, Elvis Costello’s 1986 album, while receiving my fourth and final dose of Cytarabine for this chemo cycle. Unlike the over-produced and rather directionless ‘Goodbye Cruel World’,  this album still works for me 32 years on as the songs and production remain coherent for the whole hour.

The first track is ‘Brilliant Mistake’, and the first verse seems to resonate when listened to against the backdrop of Trump and Brexit. I hope fervently that in a couple of years these brilliant mistakes will have been consigned to the dustbin of history. But if not, well, a few listens to ‘Suit of Lights’, also on this album, will probably make me feel a little better.

Brilliant Mistake – Declan MacManus

He thought he was the King of America

Where they pour coca-cola just like vintage wine

Now I try hard not to become hysterical

But I’m not sure if I’m laughing or crying

I wish that I could push a button

And talk in the past and not the present tense

And watch this hurting feeling disappear

Like it was common sense

It was a fine idea at the time (*)

Now it’s a brilliant mistake

 

(*) I was obviously never convinced that Trump or Brexit were fine ideas, but understand why many people thought they were. Hopefully change is coming …

 

A complete response

I had the results of my most recent (last week’s) PET/CT scan today. The good news – no, excellent news – is that it shows I’ve made a complete response to treatment for MCL. So I’m officially in remission.

The plan from here is that I will have a Hickman line fitted tomorrow, followed by my 6th cycle of chemotherapy. I should be out of hospital again on Saturday. There’s still some concern about me being slightly anaemic and neutropenic, so it may still be delayed by a week if my counts haven’t recovered by tomorrow lunchtime.

Packed and ready to go for cycle 6

Packed and ready to go for cycle 6

The tricky bit comes next – the stem cell harvest and transplant. Stem cell harvest should be straightforward. I will have a series of mobilising injections during the first few days of July. I’ll then be hooked up to a machine for a few hours that will filter the stem cells from my blood. These will be frozen until I’m ready for the transplant.

Transplant consists of an ultra-strong dose of chemotherapy given over 5 days, followed by what should be a relatively fast (minutes) return of my stem cells. Initial recovery should take a couple of weeks before discharge. I hope to make a full recovery over the following 2-6 months.

I’m still concerned about the transplant. It’s the most daunting part of the process and carries the most risk. Hopefully my reaction to treatment so far will minimise any likelihood of severe problems.

The C word

No, not that C word.

And not ‘Chope’ either, though goodness knows his antics and those of his filibustering friend have made me furious over the last few days.

The C word this blog post is about is cancer.

A few days ago I noticed this tweet – and it moved me sufficiently to object. (There’s that O word again – but I promise this isn’t going to turn into a rant about Chope).

I’m all for doctors being honest with their patients. And on reflection, telling someone they have a tumour, malignancy or mass isn’t helpful. It’s definitely avoiding the issue. But so is always using the word cancer in a diagnosis conversation.

Cancer covers a vast number of different diseases, each with their own unique challenges. Saying ‘you have cancer’ to a patient is about as useful as telling people with (say) liver cirrhosis, heart disease or a kidney infection that they have an ‘organ problem’.

In my own experience, the specificity of the discussion I had on first diagnosis (firstly around lymphoma, then the specific type, followed by the treatment options) was far more important than the use of the C word. I think the use of the C word might even have been counter-productive in my case – it would have terrified me. To be honest, I don’t believe that any of my consultants have ever used the C word in conversation with me, and I’m glad that they haven’t.

The unhelpful stereotypes that the word cancer induces would probably have stopped me from listening. It certainly wouldn’t have helped with my decision to go on watch and wait. After all, the cancer treatment stereotype most common in public discourse is that treatment should always be immediate. In the early days, I lost track of the number of times I had to convince friends and colleagues that immediate treatment, in my case, was unhelpful. However, talking about my condition as lymphoma rather than cancer (or even blood cancer) helped people to understand that what I was facing was a little different to the usual cancer stereotype.

Now, I’m certain that different people will react differently to this. If there’s one thing that being a lymphoma patient has taught me is that everyone reacts differently to the news – and to their treatment programmes.

So my revised #tipsfornewdocs would be to make time to have a proper discussion with your patient about their diagnosis. Take time to understand what they already know, and what they don’t know. Definitely don’t beat about the bush – just talking about a mass, malignancy, tumour or even cancer is not enough. Be specific. But do use terms like lymphoma or leukemia if that’s what they have. Explain the consequences and treatment options for the diagnosis. And if the C word isn’t helpful in describing these, don’t feel the need to use it.

The NHS belongs to the people ... and your diagnosis belongs to you, the patient.

The NHS belongs to the people … and your diagnosis belongs to you, the patient.

Farewell Maxi-CHOP. You won’t be missed!

Bulldog spirit is required for Maxi-CHOP

A bulldog spirit is definitely required to face Maxi-CHOP chemotherapy. This photograph was taken a year ago at the RHS Chatsworth show.

 

My blood test results from Monday showed a significant improvement over the previous week (no longer neutropenic, but still a little anaemic), so cycle 5 happened on Wednesday. I felt dreadful yesterday. It was the first time since I started chemo that I didn’t bother to get out of my pyjamas all day. I have perked up enough today to write this (and get dressed), so that’s good news.

Even though it’s given in a day clinic, I’ve found the Maxi-CHOP chemotherapy more difficult to cope with than the high dose Cytarabine, which needs a hospital stay. Fortunately, this cycle is the last Maxi-CHOP that I will have. One more Cytarabine cycle to go, and assuming all is well after that preparations for my stem cell transplant will begin.

The two elements of the Maxi-CHOP chemotherapy that I find most difficult to cope with are the Cyclophosphamide infusion and the Prednisolone steroid tablets.

Cyclophosamide does astounding things to the sinuses that make hay fever seem like a pleasant experience. It provides all of the snottiness coupled with an eye-popping, full-head heating effect. Fortunately, these problems only seem to last as long as the infusion takes to administer.

Prednisolone is worse. This steroid is given as tablets – one dose is taken during chemotherapy, followed daily by another four doses. It doesn’t matter how quickly you swallow the tablets, they taste disgusting. The effects of the steroids keep me awake at night and ruin my taste buds. Sweet things are a definite no at the moment.

However, the days immediately after stopping the tablets are worst. That’s the point at which your blood counts are dropping and the highs from the steroids become crashing lows. If cycle 3 is anything to go by, next week will be pretty unpleasant.

But at the moment I’m just pleased that I won’t need another Maxi-CHOP cycle. And even if I did, I wouldn’t be able to have one anyway. The toxicity of Maxi-CHOP is such that 3 cycles is just about all anyone can cope with in a lifetime.

Chemotherapy cycle 5 postponed

The tiredness I felt after cycle 4 turned into shortness of breath a few days later.

I didn’t think too much of it at the time – after all, I still felt pretty well compared to the horrors of cycle 3 and was eating and drinking normally. Rather more than normally most of the time …

I therefore spent most of the middle week after cycle 4 either in bed or lounging around on the sofa. One day it took me nearly 3 hours to mow the lawn – and four or five ‘sessions’ during that time to complete it. Normally it takes me 20 minutes at most.

But by last weekend I felt pretty good again. I even managed a Bank Holiday Monday (and 30th Wedding Anniversary) outing to Hardwick Hall.

Hardwick Hall

Alliums in the Hardwick Hall gardens, 28th May 2018.

Tuesday’s blood tests indicated that I had probably been very anaemic in the days after cycle 4 – and still was. “My lowest ever results”, my consultant exclaimed. It was only my bouncy demeanor that persuaded her that my red cell count was probably on the way back. I therefore avoided the need for a blood transfusion. However, the G-CSF injections I’d had after cycle 4 had failed to bring my white cell count up, so I was given another four to self-administer this week.

All this means that cycle 5, which should have happened on Wednesday, has been postponed for a week. I’m feeling as well as I have done all the way through the process, so I’m not too disheartened.

Fourth chemotherapy cycle complete

I had my fourth chemotherapy cycle (one infusion of Rituximab, followed by 4 infusions of high-dose Cytarabine 12 hours apart) as an in-patient at the end of last week. This time I was in a bay with four other patients rather than in a side room, so it felt rather less isolating than cycle 2.

I was fortunate to end up with a window view. It might not look much (I suppose it isn’t, really), but the birds landing in front of it (mainly pigeons) kept me entertained.

The view from my hospital bed

The view from my hospital bed

The first four infusions of this cycle were straightforward. It’s sometimes been a struggle for nurses to get a cannula into me (my veins are deceptive) but this time it was a painless, first time experience. Just before I thought I was about to have my final infusion (Friday lunchtime) I took this photograph and announced to the world that I was nearly finished. I really shouldn’t have boasted – as a few minutes later I found out that my cannula had become slightly dislodged overnight, so a new one was going to be required.

The selfie king!

The selfie king – still with great eyebrows!

Despite the valiant efforts of no less than four members of staff, putting another cannula into me proved unsuccessful. At this point, the decision was made to give a picc line instead. I was always going to need one for the stem cell transplant later on in the year, so this incident just brought it forward a few weeks. Having the picc line delayed treatment by a few hours, as it involves putting a fine flexible tube into a vein in the arm under local anaesthetic followed by a chest x-ray to make sure that it was in the right place. Mine needed a bit of adjustment, so a second x-ray was required to double-check.

My picc line is 42 cm long and terminates somewhere below my neck, above my chest. The whole process was painless and the good news is that I will need no more cannulas during treatment. It also makes taking blood samples much simpler, as it can be used for those too. No more needles! Hurrah! The downside is that I need it flushed and the dressing changed on it every week. A district nurse will be visitng to do this for me.

I’m feeling much better at this point in time than the equivalent after either cycle 2 or 3, but I am extremely tired. I’m hoping that a few days of good sleep will help. But feeling tired is much better than not feeling like eating or drinking as I did after cycle 3. I’m hopeful that I may be able to enjoy some of the better weather that’s been forecast here for the next couple of weeks as a consequence. I have a little yellow friend sitting in the garage who’s desparate for another run out soon …

Is it playtime yet?

Is it playtime yet?

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