The length of the climb
My Allograft 2018/19 – 1. Sunday 9th December 2018
By Andy Burrows, 9 December 2018
My daily blog begins again
I recorded a bunch of videos over the last week that I had every intention of editing and putting together into a little documentary on what I’ve been doing to prepare for my stem cell transplant. Needless to say, video editing takes me too much time, and I’ve got quite a lot on my mind, so perhaps I’ll do that later!
So, rather than hold up my blog because I’m waiting to do the video, I’m going to just get on with writing stuff, and come back to the video later on.
I’ve convinced myself that writing a daily (or at least fairly frequent!) blog, and posting the odd video here and there, is worthwhile. I know that you want me to write, and I know that you are interested in what’s going on even in my most boring days. You care, and I appreciate that a lot.
The other thing is that it helps me to stay connected, to reduce the feeling of isolation, even while I’m not physically able to see people or mix with large groups of people.
Many people say, “I hate Facebook”, with an indignation as if it’s Facebook’s fault that it devours hours of their time reading silly stuff. Well, I love Facebook! I love LinkedIn! (And I’m still trying to work out what to do with Instagram, Twitter, Google+ and Pinterest!) Facebook enables me to keep up to speed and connected with loads of people that I would have otherwise lost touch with years ago. I get to say Happy Birthday to people whose birthday I would normally overlook. And it enables me to stay at least vaguely up to date with friends who I may not be able to see regularly.
With Facebook, you’re always only a small comment, like, reaction, photo, video, or instant message away from reigniting relationships that have been dormant for years.
So, blogging and social media will be high on my agenda each day again. And I know that’s going to be mutually beneficial. I aim to encourage you by putting into words some of the random thoughts that cross my mind. And I know you will encourage us simply by reading what I write (because it means you care!) – and yes, I do check the website stats to find out how many readers there are – and with your prayers, your thoughts, your comments and your good wishes.
I know that was the case with my autograft three years ago. So, why wouldn’t I do the same again?
The week before admission
There’s a reason why I wanted to start the transplant journal before I’m admitted to Southampton Hospital on Tuesday.
And that’s because in the last week (and the week before to an extent) it really hit me the number of parts involved in my stem cell transplant – my Everest challenge…
… and the number of people and departments! And as a project manager I can tell you that coordinating that number of people and departments is no easy task! Let me briefly outline:
Tuesday 27th November, the bone marrow biopsy, with the haematology doctor and nurse – I spoke about this in my last post.
Monday 3rd December, meeting my haematology consultant in Southampton Hospital, the one who heads up the team in charge of the donor stem cell transplants. An hour asking questions and discussing what’s going to be happening and why.
The slightly disconcerting thing was that I was supposed to be there to sign the consent form for the transplant, but she wasn’t happy to ask me to do that. There was a query she still had with the PET CT scan report from 18th October (though I’m not sure why that query hadn’t been cleared up earlier, to be honest). It required a discussion at the next MDT (multi-disciplinary team) meeting to get a collective opinion from the other oncology, haematology and lymphoma specialist consultants. That discussion was to take place the next day.
Tuesday 4th December, three tests:
- An echocardiogram – checking the health of my heart – 45 minutes of lying on one side, breathing, and holding my breath, with electrodes stuck to my torso, while the cardiologist used ultrasound to check various things.
- A kidney function test (‘GFR’) – first an injection of a very lightly radioactive substance, then blood tests two hours, three hours and four hours later.
- A lung function test – 45 minutes of sucking, breathing and blowing into a tube in a variety of different ways to check things like my lung volume and how well my lungs extract oxygen into my bloodstream.
Thursday 6th December, Hickman line insertion.
This is the third time I’ve had one of these things fitted. Last time, three years ago almost to the day, the procedure was quite painful. I was going to say that that made me a little apprehensive, but thinking about it, it didn’t. I remember sitting quite calmly – perhaps even a little bored – as I waited on a chair in the x-ray department.
My father-in-law (bless him) drove me to the hospital because I would not be allowed to drive home, and Heidi was working. We left the house at 7am, got to Southampton Hospital at 8am, and was taken to the x-ray department at about 8:45am.
I waited an hour. I was told by the embarrassed staff that it wasn’t normally like that. I admired their honesty – apparently the linen department had forgotten to deliver scrubs for the consultant anaesthetist who would be doing the procedure, so everyone else was ready and just waiting around for her to get dressed!
And the procedure to fit the line took about an hour, so I got back to the Haematology ward at about 11am.
A Hickman line is a tube that is inserted under the skin in your chest (kind of level with your armpit), threaded upwards into a vein and over the collar bone, and then down behind the rib cage into a valve at the top of a chamber of your heart. The bit that remains sticking out of your chest can divide into a number of ‘lumens’ – this one has three.
It’s what I call the ‘industrial strength catheter’! It must be better than the PICC line that I had in my right arm for four months, otherwise why would they go to the trouble of changing it? This Hickman line will be left in place for about four months or so.
It struck me again how even this line fitting is quite a big thing on its own! A consultant anaesthetist, an x-ray machine operator, two nurses, an operating theatre, for an hour – just to install easy access to my bloodstream… although admittedly it is quite important, since they’re going to want to get blood out to test, and put ‘stuff’ in, almost every day for the next couple of months at least.
It wasn’t as painful as three years ago, thankfully.
After that, I had to spend two hours just sitting in a chair in the ward, just so that the nurses could make sure I was ok to go home. So, standard ‘obs’ every 30 minutes (blood pressure, temperature, heart rate and blood oxygen level). They also have to make sure that bleeding has properly stopped after the operation.
Towards the end of that time, the nurses came along and removed the PICC line from my arm.
As the local anaesthetic wore off throughout the evening, I’ll admit, the discomfort was enough to set me on edge. I described it as feeling like I had a knitting needle stuck down my neck behind my collar bone! I couldn’t move my head from side to side without some pain.
But by the next day, as the swelling reduced and the stitches settled in, it was feeling much better.
Friday 7th December, first I went back to the Haematology ward to have the dressing changed on my Hickman line (and have a blood test, which I’ve noticed that they seem to do whenever I’m there for anything!).
Then I went for a PET-CT scan – another few hours of sitting/lying around. Yes, I did have one of these in Guildford on 18th October. And yes, they’d reported back from the MDT on Tuesday that the collective opinion was everything was ok and “full steam ahead”. But they like to have a scan (as well as all the other tests) in the two weeks before a stem cell transplant, so that they can trace the impact of the transplant process from an accurate baseline.
In terms of reflections, my first thought is that, unlike many hospital treatments, a stem cell transplant is really complicated, and involves coordinating a load of people, as well as quite intensive care over a long period of time.
My second feeling is, given the busy schedule this past week, I can see myself feeling relieved to finally get into hospital on Tuesday. Finally some space to relax and get my brain in the right frame.
But on the other hand, firstly, I don’t think there will be very much time to pause and reflect, because within a few hours of arriving I’ll be connected to the drip, and within 24 hours I’ll be starting chemo (probably the worst slug of chemo of my life). And secondly, I feel guilty looking forward to finally coming to that big step, the quiet of my isolation in Southampton. Because Heidi and the kids will be left at home to get on with life without me, having to pursue normal life to a large extent, but fitting in hospital visits and Facetime/Skype calls with me. I still say that they have the worse end of the deal.
And thirdly, every time I speak to the doctors it sinks in a little more how long this journey is.
It’s not like my previous cancer battles. It’s even a lot different to the autograft I had three years ago.
Diagnosis – treatment – recovery. A few months of hospital stuff then a check-up every month or so, and a few months of recovery, then back to work. That’s the extent of the previous rounds, and that’s been bad enough!
This time round I can’t even see the end of the treatment and recovery. There’s talk of a “top up” transplant in six months time, and I’ll still be on some drugs at that stage. There’s talk of maybe going back to work this time next year, maybe being able to book a holiday after that. There’s talk of getting re-vaccinated with all my childhood jabs – in 18 months’ time. Boiling water, watching the diet, being careful who I see and where I go, staying out of strong sunlight, avoiding public places… for months and months.
I’m not going to lie. I find it slightly daunting. It’s going to be physically tough at times early on. It’s going to be emotionally tough. It’s going to put a strain on relationships to the extent that people understand the protective bubble that I’m going to need. And it’s going to be a headache defining and agreeing what that protective bubble is, and how strictly it needs to be maintained.
So, the only way to face it is day by day, step by step, as always. Whatever lies in the next part of my life’s journey, I hold on to, with confidence, the hope and the promise that there is a bright and glorious future awaiting, full of joy and happiness. And there will be plenty of sunshine, smiles and laughter along the way too.
Don’t miss my future blog posts
I’m not going to post on LinkedIn with a link to every update. I will on Facebook. However, you may have noticed that Facebook and LinkedIn, and other social media, don’t always show you everything from all your friends or connections. So, if you don’t want to miss any of these blog posts, now I’ve got a reason to write some more, then I have got a mailing list that will automatically notify all subscribers of new blog posts. So, if you definitely want to see everything I post, subscribe on the mailing list.
Thanks for being interested in my journey. And always feel free to interact and let me know your thoughts.