Trying to break the cycle

Trying to break the cycle

14th October 2019 2 By Andy Burrows

My Allograft 2018/19 – 31. 12th October 2019

By Andy Burrows, 12 October 2019

Something’s just not quite right

I must apologise up front for such a long update. It felt like recent events unfolded quite subtly and slowly, and I wanted to see how things played out (and whether they turned out to be significant) before starting to record them here.

I managed three-and-a-half weeks at home before having to be admitted to Basingstoke Hospital again because of another complication.

And it wasn’t a simple case of fever, temperature, antibiotics, etc… but let me wind back to explain how things developed after coming home from my last incarceration…

After spending a month in a confined space, simply increasing the space available to me automatically forced me into more exercise (albeit most people would not call walking from the kitchen to the lounge, or walking up three flights of stairs, exercise!). Things as small as putting washing in the washing machine, making beds, emptying bins, etc, felt like massive exertion.

And it caused that lactic acid stiffness in my muscles that normally comes the day after lots of exercise. In the past the level of exercise to cause that kind of thing would have meant building something, digging up the garden, breaking concrete, or doing a lot of heavy lifting. Or it would have meant some intense sport. For me, quite frustratingly, it came after mundane household pottering around and a few chores.

That stiffness and muscle weakness lasted a whole week after I got home. I thought at one stage that it was never going to get better!

Once that had subsided, I was just conscious that I’d been left very weak and shaky. Most of that, I was convinced, was due to my lack of exercise over the previous two months when I’d either been in hospital or confining myself to the house.

Monday 23 September

However, I was popping my pills out and putting them into the pill-sorter for the week on a Monday about two weeks after coming home (23rd Sept), and Heidi commented on how much my hands were shaking. My reply was, “oh yeah. But what you can’t see is that the shakiness extends up my arms and also affects my legs. It’s also causing me a fuzzy head!” I realised that I was constantly feeling weak, slow, shaky and “fuzzy-headed”.

I thought it was just one of those things that would settle down, and I was starting to think in terms of using an exercise bike to start building up strength again once the shakiness had cleared.

Tuesday 24 September

But, to be on the safe side, and since the shakiness was going on so long, I phoned the nurse specialist in Southampton the next day, and she spoke to the consultant later on. The following day, she phoned me back to tell me to stop taking the cyclosporine (I was due to stop within a couple of days anyway). And then she told me to phone back if the “tremors” continued or got worse.

Thursday 26 September

Waking up on the Thursday with a headache, I took paracetamol, and then sweated profusely for two hours. That would normally suggest that I have a suppressed fever. It’s certainly not right to be sitting still, out of breath, and literally dripping with sweat.

So, I phoned the hospital again, and ended up in the Acute Oncology assessment area in Basingstoke Hospital for a few hours for blood tests and observations.

By early afternoon, they hadn’t found anything untoward except, yet again, my CRP count was up over 100, suggesting that I did have an infection. But there were no other obvious signs. I also tested positive for rhinovirus, but didn’t have any symptoms.

I was sent home with a prescription for a month-long course of antibiotics, which I understood to be ‘just in case’ and in recognition of the CRP reading.

After phoning the nurse specialist in Southampton to update them, I was asked to come down to Southampton Hospital the following Monday for more of the same.

Monday 30 September

That appointment was equally inconclusive. The strange thing was that I was starting to develop cold symptoms… but the tests were negative for rhinovirus!

The upshot was that they’d see me next at the Thursday clinic in 10 days’ time, and hopefully by then I’d be feeling better… and if not, well, I knew the phone numbers to call! In other words, all we could do was to wait and see whether I got better or worse!

Friday 4 October

By the Friday I was starting to show more signs of having a cold, and had a bit of an annoying cough.

I was booked to go and have a CT scan of my chest in Southampton at 5:30pm (so I was informed the previous day!). Apparently, this is a routine next step after a chest x-ray where there is a respiratory infection.

So, that took up most of my afternoon that Friday! I was a little concerned about keeping still for the scan, because my cough was developing. But, in the event, it was all fine.

Time to call for help?

Sunday 6 October

On Sunday morning, I felt more wobbly and lightheaded than normal. Climbing the stairs was more of a challenge than usual, and I had to sit down after even a minute or two of exertion (exertion being like walking between rooms or taking the bins out!). I also felt warm, but not feverish.

So, I took my temperature. 37.5C. Hmmm! Better check that again later, I thought.

An hour later, I took my temperature three times to make sure – 38.1, 38.1, 38.3… Sigh! I knew what I had to do, even though I didn’t want to.

I made the phone call to the Basingstoke chemo emergency line (because it was a Sunday) and got through to a nurse that I knew on the Wessex Ward. I explained the situation and symptoms and she told me to pack a bag and go over to the Acute Assessment Unit (AAU).

What a drag!

Within a relatively short time I was kicking myself as it became apparent that this episode was not quite as serious or urgent as previous “temperature spikes”.

By the time the AAU staff got around to doing my first set of ‘obs’ my temperature was only 37.5C.

I was connected to some IV antibiotics and within an hour my temperature was down to normal, 36.7C.

(And, by the way, being “connected” to the IV was not straightforward! I hate cannulas! It took three people five fairly painful attempts in total to finally find a vein that worked!)

And as I expected, even though everything was easily under control, the doctor was not going to let me just go home. Why didn’t I just take some paracetamol? Why didn’t I sit tight another hour or so before phoning in? Here comes another hospital inpatient stay, just for the sake of a mild fever!

As it happened, there were no beds available in the Wessex Ward, where I would normally go. So, they found me a bed on ward C3…

… and there I stayed for four nights and four days.

Thursday 10 October

So, here I was in a side room only a few meters away from the one I’d stayed in when I had my first brush with lymphoma almost 10 years ago.

And I sniffed and snivelled and coughed through those four days, while the doctors discussed… and couldn’t tell me much.

In fact, I don’t really know how I filled my time for all those days. It’s difficult to get across to people just how tedious it is. I doubt most people could even imagine being confined to a room, with limited things to do, for more than a couple of hours. Try imagining every waking hour, day after day for almost a week!

And for some reason it was even more tedious than last time. I think it was because the ward is different, the room was plainer, I wasn’t having a lot of intervention in terms of IVs being set up, monitored and taken down, and I didn’t know any of the staff anyway.

And, as I mentioned, it seemed like the doctors were having lots of discussions – Basingstoke Hospital, Southampton Hospital, haematologists, radiologists, microbiologists, virologists, pharmacists! I’m not sure how I feel about the fact that I am the subject of such intense and drawn out discussion by so many experts. On one level I feel very well looked after. On another, it worries me that it seems to be so difficult these days to find the right treatment plan.

New theory, new plan

When the entourage finally came to see me on Thursday, the consultant said she was happy now that she felt they’d agreed a good plan. The Southampton consultant and team were in agreement, so everyone knew how to proceed.

Firstly, they were now proceeding on the basis that the primary concern was the recurrent rhinovirus (common cold). This, they were now suggesting, was the thing that I could not get rid of, because of my weak immune system. The theory was now that, with this in the background, some or all of my feverish episodes had been due to secondary bacterial infections overlaying the cold. That’s why antibiotics had been effective, but had not resolved everything.

And they noted that my immune system was weak not only in the areas affected by the stem cell transplant and the cyclosporine (T-cells). I also had extremely low immunoglobulins. (Yes, I know I’ve lost you in biological technicality… I don’t really understand much myself. Let’s just say that these things are elements of my body’s ability to fend off germs, basically!)

Therefore, the proposal was to put me on some treatment to boost my immunoglobulins. This was to start immediately with a first IV infusion of immunoglobulins within a couple of days while I was in hospital, and then I would have further infusions every four weeks (as an outpatient) until my levels were stable and normal. This is called IVIg (IntraVenous Immunoglobulins) treatment.

This will not interact with my transplant engraftment at all, so they say.

So, I guess, in summary, it’s a way of strengthening one area of my immune system artificially to indirectly support the whole natural process.

Secondly, the CT scan of my chest had apparently showed some slight thickening around one of my vertebrae. This could be nothing or something. So, to resolve the debate they’d decided I should have an MRI scan of my spine. This could be done equally quickly either as an inpatient or outpatient.

Thirdly, in view of the need for continued further IV infusions and the fact my veins are not very conducive to having cannulas inserted, they agreed to give me a PICC line.

Moving upstairs

The rest of Thursday was pretty boring, much like the rest of the week!

The highlight was that a bed had been found for me up in Wessex Ward, so I was moved there late in the evening.

Friday 11 October

One would have thought, with the plan sorted out, that it would be “all systems go” and “let’s get burrows-exit done!” Hmmm. Not quite.

One of the doctors came in quite early and told me that the nurse who fits the PICC lines had said she’d try to fit me in that day. She said the IVIg was being discussed and readied, but had to go for some sort of approval at a panel involving senior pharmacists. And she would try to get an MRI booked for that day to make things easier, so that I wouldn’t have to come back for a scan as an outpatient.

Then I waited… and waited… and waited… and had lunch… all quiet.

Then around 2pm the specialist nurse came into my room with her specialist equipment and fitted my PICC line.

Like last year, it took about half an hour, involved a little bit of minor discomfort, but overall was less painful than having a cannula inserted! And even though I’ve got to take care of it, constantly hanging out of my arm, and I have to have the dressing changed once a week, it can be used easily every time I need a blood test or an infusion of any kind. And it can stay where it is for several months. And I don’t have to worry about cannula pain!

And then I went back to more waiting… but nothing else happened! Apparently by the time they’d got the approval for the IVIg the nurses didn’t want to start me on it, because it would have crossed over into the night shift where there would be less support on hand for complications.

Evidently an IVIg is a bit like an antibody treatment such as Rituximab or Campath, where there is a risk of allergic reaction. So precautions are taken. The infusion is started slowly, with ‘obs’ every 30 minutes, gradually increasing the rate of infusion as long as all is going well. Understandably, therefore, the nurses want to give it as much of their attention as possible, and not get distracted with shift handover and other things.

And that probably explains why mine wasn’t started until just before lunchtime on Saturday.

Saturday 12 October

When the consultant came to talk to me in the morning, she was thinking in terms of keeping me as an inpatient until everything had been done, including the MRI scan. So, she offered to let me have “home leave” after the IVIg infusion.

However, when I questioned where that would put me in terms of finally going home, she realised that the only thing stopping me being discharged after the IVIg was the fact that they’d requested my MRI as an inpatient. She admitted that this could easily be changed to an outpatient request, and that it would not affect how soon they’d be able to find an appointment.

So, we agreed that after the IVIg was done, I could go home.

The IVIg infusion itself took about five-and-a-half hours altogether. It could have been quicker, but I didn’t tolerate the infusion perfectly. At one stage, I started shivering and I felt my temperature rising, so they gave me some paracetamol and paused for a little while. That all subsided, but they decided not to increase the infusion rate further. A little later, too, my blood pressure was a little low, so the infusion was paused for a while.

So, all-in-all, I can vouch for the fact that an IVIg is something that the medical staff take great care over. It’s not a “set and forget” infusion by any means!

Pizza and Netflix

But, finally, to draw this long update to a close, I finished Saturday, after six days and six nights in hospital, back home with the family, having pizza from the Co Op and watching a film on Netflix… and sleeping in my own bed!

And yet, it’s just a convenient point for a break. There’s no cliff-hanger. But my own saga continues. There’s an MRI scan to have, as well as the small matter of how the heck I can get back on track and start to feel stronger. How can I regain any sense of direction? How do I get out of the fog and back onto the path to ‘normality’?

But that’s for another update…