And, at last, onwards again
My Allograft 2018/19 – 32. 10th November 2019
By Andy Burrows, 10 November 2019
Living with limbo
I’ve been holding off posting an update until certain things played themselves out. And the fact that it’s now a month since my last update gives a measure of the limbo I’ve lived with during that time, day after day, week after week.
It seems weird to think that I’ve settled into a routine where every day I consciously live with, and accept, an abnormal way of life. I wake every day, bleary-eyed, wondering how I’m going to feel today, thinking about the next hospital appointment, test, results, procedure, consultation. My daily life is about me, being conscious of the next step to take.
It has also, at times, become a conscious battle to manage my thoughts as well as my physical condition. Given that the biggest thing in my mind is always my physical recovery, my descent off My Mount Everest, how do I prevent self-obsession, self-centredness, self-boredom (where I get bored of myself!!), negative thoughts, despondency.
It’s easy when you have one dull day to nip those negative thoughts in the bud. But when those dull days extend, day after day, it starts to demand some discipline. Sometimes – to betray my North of England roots – I’ve had to “give myself a right good talking to” to get rid of unhelpful ponderings. And I haven’t always been successful in that, I’m not going to lie.
The past tense at last
But here I am. It’s a month since I came home from my last hospitalisation. It’s four months since my run-in with infection-related complications started. Four months of trudging through the fog and fuzziness, feeling I wasn’t moving on, wasn’t progressing in my recovery.
It has felt like a setback. Whether it was or not will no doubt become clear sometime in the future when I look back with the benefit of hindsight.
And here I am talking about those last four months in the past tense at last! Yes, I feel (and so does the medical team) a lot more positive, and I feel like I’m getting back onto the forward-facing path.
I’ll admit that, after the fog of the last four months, I can’t make a statement like that without sucking air through lightly clenched teeth. I don’t want to speak too soon, knowing that during the last four months I’ve often been pulled back under a new infection after only a few weeks of beating the last one.
But something is different. And I’ll come back to what has changed later on.
In practical terms, the first priority has been to find a way of putting the cycle of infections, antibiotics and hospitalisation, finally to bed, so that I can move on with more confidence.
When I came out of hospital last time the doctors had just agreed a change in tactics. Instead of reactively responding with antibiotics and hoping that the infections didn’t come back, they looked at it from a different angle.
I’d been testing positive for rhinovirus (common cold) for weeks, perhaps even months, even when I wasn’t showing symptoms of a cold. And it so happened that in hospital in October I was very much showing symptoms as well, coughing and breathless and sniffly (side-note irony – from that point onwards I tested negative for rhinovirus and positive for metapneumovirus, another version of common cold!).
The new theory was that viruses were kicking around my body, never fully under control because of an immune system weakened by the last ten years of cancer treatments. Add to that a particularly weak immune system following the stem cell transplant, and those viruses were now coming out to cause problems, and probably allowed secondary bacterial infections to get triggered at the same time.
I’ve often said that this treatment is so so complicated! Mainly this is because the human immune system is not one single system. I’m no biologist (I didn’t even do Biology at school!), but it seems that several systems interact and work on different areas of infection resistance and immunity.
The part of my immune system that has come from my stem cell donor is still almost useless. This is the bit involving the T-cell lymphocyte white blood cells (I think).
The bit that has been run down by years of treatment is the bit involving immunoglobulins (I call them the “good goblins” because I can’t pronounce the other word!) – another type of blood cell.
It turns out that these “good goblins” can be transfused like a blood transfusion, because they are extracted from normal everyday blood donations. Effectively that gives me someone else’s built up immunity for a period of time… but they need topping up until such time as my body decides to make them for itself properly.
So, I have to have monthly intravenous immunoglobulins (what they call an “IVIg”) to keep the levels topped up. I had one in hospital on 12th October. The next one is 12th November.
The other aspect of the new tactics is to give me a) a longer course of antibiotics just to make sure all the bacterial infections are gone and that I don’t succumb to new infections; and b) an antiviral tablet that deals with certain viral infections.
Now, there’s no evidence that I actually have any of the viral infections that they’re treating me for! The new tablet doesn’t deal with rhinovirus (there is genuinely no hidden cure for the common cold!).
So, the way to think about this tactic is that it’s bolstering areas of my immune system that can be artificially bolstered, so that the immune system cells that are still maturing get protection and get chance to flourish eventually over the next few months.
This appears to be working. Even though, even a month or so later, I am still a bit sniffly, the cold symptoms have definitely slowly receded. And my CRP (infection indicator) blood count is down close to the normal range for the first time in four months.
I’m just coming off the protective antibiotics, but when I asked how long they will continue with the IVIg and antiviral drugs, I was told, “until you feel completely better” for the latter (expected 3-6 months). And I was told that I may have to have IVIg monthly for the rest of my life, but they need to keep it going for at least 4-6 months and then review.
So, it’s still very much early days – yeah, even 9 months after my transplant – but it’s good to see improvement.
MRI of the spine
The other thing you may remember from my last update is that I was expecting an MRI scan on my spine to check out a minor anomaly that was seen on a CT scan of my chest.
That MRI scan took longer than expected to get arranged.
But the results were good.
No sign of lymphoma still (so I’m still in remission – slightly unnerving the way they have to confirm this literally every time I have a scan for anything!). And no sign of discitis (the tough bacterial infection of the spine).
The interpretation of what they can see on the scan is that I have small healed compression fractures in several vertebrae. This would be as a result of ten years of cancer treatment, especially the steroid treatments, which can cause bone softening over time. So, nothing to worry about immediately, but it probably means I’ll have osteoporosis to deal with when I’m old. (Note, when I’m old – I like that phrase, it’s kind of hopeful!)
Taking things into my own hands
The icing on the cake, though, is that I now feel mentally sharper and happier than I have done for months.
And I achieved that by being a bit naughty!
You see, even though there genuinely have been infections to deal with, one of the biggest frustrations I have kept mentioning to the doctors is the set of symptoms that includes shakiness (hands/arms), weak legs, fuzzy head, dizziness, and occasional sweating. If I look back, that’s what I’ve phoned them up about and majored on (before getting infections a couple of days later).
I have told them on many occasions that these symptoms “feel steroidal or hormonal”. I’ve been on corticosteroids before and I know the kind of feelings they can give you. And I’ve told the senior consultants that I don’t feel I’m being taken seriously when I’m trying to give them the answer! (Sounds a bit arrogant, I know, but I really don’t mind being wrong, so long as they can give me a logical explanation.)
And, to be fair, both the senior consultants (in Basingstoke and in Southampton) promised me they would speak to a consultant endocrinologist and refer me for more specialist advice on this.
What I’ve effectively been trying to tell them is that these symptoms are not directly related to infections. They are part of my “adrenal” problem, which they often refer to as “Addison’s Disease”.
Addison’s Disease is when your adrenal gland packs up and stops producing enough of certain hormones, mainly cortisol. This makes you feel basically weak, lethargic and depressed.
The solution is very easy: take Hydrocortisone (steroid) tablets every day!
The issue is, what dose of Hydrocortisone? In one of my hospital stays I was told to double the dose of Hydrocortisone tablets when I’m “unwell”.
So, a couple of weeks ago, I got fed up of feeling shaky and weak (and often depressed). And I decided to do my own research into Addison’s Disease. I found – on the NHS website no less – a list of symptoms of “adrenal crisis” (where your body is not getting enough cortisol) – sweating… dizziness… headache… shallow breathing… severe muscle weakness… and that’s on top of the normal Addison’s symptoms which include lethargy, low energy and low mood… hmmm!
I also found the website for the Addison’s Disease UK Support Group… I have to admit my first reaction was snobbery: “what, they have a support group for this?! This is trivial! I have this as an add-on to my main problems and I don’t get any support!”
But, actually, hearing how people live with Addison’s, watch for symptoms, and learn to increase their Hydrocortisone dose for short periods in certain circumstances (including illness and stress) was quite helpful.
Overall, it gave me the confidence to know that increasing my dose of Hydrocortisone for a few days without asking permission from my medical team was not going to put me in any danger.
And, as I hoped, three days of fiddling with the dose did the trick. No more shakes, and a new feeling of positivity and mental sharpness.
I phoned the nurse specialist to confess my naughtiness, and got a call back after she’d spoken with the consultant in Southampton Hospital… “please don’t do that!” They thought I should really speak to an endocrinologist before fiddling with my dose of pills… Too late, I’ve done it and feel better! Hah!
I still haven’t seen the endocrinologist (too busy), but after further conversation the haematologists now do at least reluctantly admit that my tinkering is probably ok, because they know me as someone who seems intelligent enough to be sensible.
A clearer path forwards
So, the upshot of all that is that I now feel able to look forward. I feel I can start getting back on track.
Physically, my muscles need strengthening. I’m using the exercise bike regularly, and doing better every day. I tried walking the dogs the other day, but couldn’t get round the normal walk without an aching back and knees. But, I’m confident that just keeping up the regular exercise will slowly get me back to acceptable levels of strength and stamina. I don’t really care how long it takes, so long as I can see progress week by week, month by month.
I’m also plotting a comeback to Supercharged Finance work in the very near future.
Do I feel 100% confidence in moving forward? No not 100%.
Do I think I’m now clear of infection-related complications? Maybe, maybe not.
Am I letting that stop me? No!
The main thing I’ve now managed to recapture is the attitude of using times when I feel good to be productive and enjoy whatever I can. If I hit limitations – and I do get tired if I work too hard – I have to reluctantly put things down and rest.
But this is definite progress!
One final thought (for today)
My final thought is that physical and mental/emotional life is so closely related. This is reflecting on the fact that I finally felt better and more positive just by increasing a dose of pills for three days. I wasn’t counselled to feel better. And I wasn’t given anti-depressants.
What I thought was an emotional/psychological response to my physical ailments and tribulations was actually partly a hormonal shortage/instability caused by a viral/bacterial attack coupled with a malfunctioning adrenal gland…
Our low moods, our mental weaknesses, can often be more complicated than we are able to comprehend.
Never beat yourself up for feeling low. It happens to everyone. But don’t assume you’re depressed. And don’t suffer in silence! Sometimes it takes time to work out what’s going on.
One foot in front of the other. Step, step, step, boring step after boring step, one at a time, one, two, three, four, five, twenty-five, thirty… two-hundred-and-thirty… as long as it takes.
The sun will rise tomorrow!