My Allograft 2018/19 – 28. 31st August 2019
By Andy Burrows, 31 August 2019
I must admit that I never thought I’d be writing updates so regularly at this stage (Day +204)!
But this past week does warrant it. I’m still in Basingstoke Hospital in that side room on the Wessex Ward.
But there has been progress!
Last weekend itself was uneventful, apart from being really hot weather here (32C).
My CRP level continued to drift down, but unconvincingly. With the public holiday on Monday as well, it meant when Tuesday came along, I was really keen to get things going.
Because of the scan in Portsmouth, I had to wake up very early on Tuesday. The nurses had to make sure that my antibiotic drip (which at that stage was taking just over 2 hours) was finished in time for me get ready and go and meet Jacob for a lift down to Portsmouth at 8am. Before that drip they needed to do a blood test.
So, I had to be woken for bloods at 4:45am… which meant my brain woke me up at 2:30am to make sure I wasn’t startled (hmmmm)!
I’m not going to talk you through a PET CT scan again. I’ve documented that in another post a long time ago now!
Overall what struck me was just how weak and breathless I felt getting out and about. Walking round from the hospital to our house to meet Jacob, walking around Portsmouth’s Queen Alexandra Hospital trying to find the scanning department, etc… ok, it was 32C and humid… but I was not steady on my feet!
I got back to my little side room in Basingstoke Hospital around 1:30pm. There was no update on anything except they were still attempting to arrange a Max Fax (dentist) appointment to take a tooth out to close an avenue for infection.
Around 4pm my door opened with the nurse still on the phone… “Max Fax can do it now, but you’d have to go down now. Ok?” So, off I went for an hour… and came back with the (half) tooth gone and (half) a numb face!
By Wednesday morning the numbness in my face had gone, and I wasn’t in any pain. They’d done a really good job. Ten seconds where I thought my jaw was going to snap and then, ‘pop’, the tooth is out, and I’m being read the post-extraction precautions!
Keen to keep up momentum, the doctors, who already had a busy day, committed to getting my bone marrow biopsy done at some point…
Well, as it happened, it was one of the consultants who came to do it around 8:30am, while I was still on my morning antibiotic drip and had just finished my breakfast! And on this occasion it was really quick and relatively tolerable… although I was a little enthusiastic with the Entonox! Hey, you don’t get medals for bravery with this stuff… take whatever pain relief they offer!
Talking of pain, though, one of the features of this antibiotic IV I have twice a day (Vancomycin I think it’s called… I’m allergic to penicillin so they have find alternatives) is that it can be really harsh on the veins.
So, I think I’ve got through about five cannulas this week… and that’s on top of almost daily blood tests. I’d love to say I’m bruised all over my arms (for sympathy of course), but the bruises heal remarkably quickly and the nurses continue to be able to find veins that work, in spite of noting that I haven’t got many good ones left after 10 years of treatment! Praise God and thank you for your prayers!
All that activity made me forget I was supposed to be going to Southampton for my normal clinic on Thursday morning… but not to worry, there’s always the middle of the night to remember these things and send a text and hope they pick it up in the morning!
Wednesday night was inexplicably sleepless! I just lay there staring at the ceiling tiles for hours!
Poor little adrenal gland
And then Thursday night was too. And I started to suspect that it’s all related to the hydrocortisone I have to take.
An endocrinologist had come to see me last week… what’s that? You don’t know what an endocrinologist is! Don’t worry! Neither did I until I worked out (through google probably) that cortisone is produced by the adrenal gland which is part of what is known as the endocrine system in the human body…
You learn something new every day!
Anyway, the endocrinologist had been asked to assess whether I was being given the right dose of hydrocortisone. She confirmed that it needs to be doubled when I’m unwell and three days after. And then I can go back to a normal dose.
But she also dropped into the conversation that in these situations it is likely that there is irreparable damage to the adrenal gland, and therefore there was a high likelihood that I’d be getting daily cortisone from the pills for the rest of my life…
… er, what? I think I’ll kick that comment into the long grass and process it at some later stage when it might be appropriate to give my poor little adrenal gland a chance to prove it can still do its job!
The link with sleepless nights is that excess cortisone can do that. So, to me it’s a sign that I’m getting better and needing less. The doctors agreed, so I’m back to normal dose. It hasn’t worked its way through yet, though. I had a similar night lying awake half the night last night!
I was told by the doctors on Thursday morning that they were chasing the PET CT scan results, but in the meantime, since my CRP level was still drifting in vaguely the right direction, they wanted to continue the IV antibiotics, try getting me onto oral antibiotics on Friday and let me go home on Saturday if I was doing well then.
By the afternoon, after I’d posted a Facebook update (!), that started to change!
I was napping when one of the consultants burst in waving two sheets of paper. “We’ve got the PET scan results. Look I’ve printed off a copy for you!” (Quite flattering really, thinking I can understand what the radiologist is saying in his report, most of which is terminology I haven’t even heard before…!)
Actually, on this occasion it said only two things, both of which I got the gist of.
- “No sign of active recurrent disease” – that means I’m still clear of lymphoma. No relapse! From a 6-month check viewpoint that’s really positive. Praise the Lord!
- Something about “inflammatory/infectious opacities” on my lungs – which is positive in the sense that the doctors were hoping for some clues for where to look for my mystery infection.
At that stage, all the doctor could say was that there were various options, including doing nothing.
On Friday morning, I was told that one of the consultants here had spoken with one of my transplant specialist consultants in Southampton. They want me to have further investigations into said opacities.
And that will involve a bronchoscopy (camera into my lung). Conversations with the relevant department then came up with Wednesday as the earliest date for that.
And in the meantime, with CRP level only drifting down, despite looking reasonably well, I have to stay on the IV antibiotics that seem to be working… and that means more time staying in hospital!
BUT now, whilst I’m not officially discharged, I can have “home leave” in between the two IV doses (which are now 3 hours each). Yay!
So, yesterday I went home for the afternoon.
And it made me realise (again) just how far I’ve gone backwards. Walking for less than 10 minutes from hospital to home, then walking round the house, and my legs were like jelly. I tried to do a few bits and pieces, but in the end had to just sit down.
So, it’ll be nice to spend a few hours at home each day while we get through into next week and the doctors decide when I can be officially released!
How do I feel about the continued uncertainties that more diagnostics bring?
How do I feel about the delay to fully going home and being able start getting back on track?
How do I feel about the tiredness and weakness that make me feel like I have so much catching up to do?
Surprisingly calm, I guess.
I watched the film Cast Away the other day.
Tom Hanks’ character survived 1,500 days on a deserted island before having confidence that the tide was right to push a makeshift raft out into the ocean and take a chance he’d bump into civilisation.
The thing that struck me is that when the rescue eventually came, he’d got to the end of himself and all he could do was lie on the raft and let the calm waves carry him. And this after the four years of daily hard work to survive every day on the island.
I’m not saying I feel like that. I’m not saying I feel like I’m so exhausted I’m just lying here out for the count.
But I do feel that I’m being carried along. It’s not me working towards something at the moment. Whether you rationalise that as being the support of doctors and nurses, specialists, friends and family; or whether, like me, you see the hand of God, which is even deeper and more secure in providing the “peace that transcends all understanding” (Phil 4:7); I don’t feel angry, frustrated or depressed.
There’s a time for climbing and a time for just breathing.
And that’s kind of the punchline of the film Cast Away, as the main character explains how on the island he finally lost his last illusion of any control in the situation – his ability to take his own life – and how he would use what he learnt to live his life back in civilisation:
“But I know what I have to do now. I’ve got to keep breathing. Because the sun will rise tomorrow. And you never know what the tide will bring.”