We catch up with former Gogglebox star Scott McCormick after he underwent HSCT treatment
On my second day in Hammersmith Hospital, my treatment began.
I had 1.5 litres of chemo drugs, followed by the 1.5 litre anti-thymocyte globulin (ATG) chaser. The ATG was far harder than the chemo – that much I will say. I had a lot of water retention that concerned the doctors. I was carrying 5kg more than usual, which meant I was holding five litres of excess fluid from the chemo and ATG infusions over the previous four days.
Immune system destroyed
At this point, my bloods were frequently checked. I was neutropenic [having a very low level of neutrophils, which are white blood cells that fight infection], with absolutely no immune system what so ever. This meant any everyday bug or virus now had the potential to really go to town on me.
This was not helped by the chemo and ATG making all the thin membranes in my body – from my gums to my rear exit – very thin, sore and swollen.
Preparing for HSCT
Here are some things I’d like to pass on to anyone due to undergo HSCT:
- Get a soft toothbrush – it really helped with the aforementioned gum issues
- Basic personal hygiene is key at this time. Even if you can’t be bothered, and are having to use a chair in the shower, you must. A good warm shower not only feels great, but it will wash the strong chemo smell from your skin
- I'd also recommend to anyone about to undergo HSCT to get a soft, warm woolly hat, as my head was cold after I lost my hair, and I was seen wearing my pants on my head at night
- Paying £20 for the high-speed internet to keep yourself occupied is another must. I tried to write back to every person who had taken the time to write to me during my treatment. As well as being polite, it was also self-serving by keeping me very busy for a lot of most days
- Make sure you have a few sets of spare clothes with you (I’ll explain why in a minute). I just about got away with a set of three full changes of clothes. With retrospect, four or five or might have been wiser, but there is a washer and a dryer on the ward for all to use
I was so glad that chemo smell only lasted for a week or so. The memory of it will be with me for a long time, I think. It even put me off the deodorant I was using, as I was associating it with the smells. It was a cheap one I will never use again, as I had given this some thought before I went in for the HSCT. Everything was cheap and disposable, so I could bin it after I left hospital.
At the point where I was neutropenic, I had been told by Nader, one of the brilliant nurses looking after me, that if I ever started to feel warm, I should tell someone immediately. Everyone gets a nasty infection at this stage.
So, as predicted, a couple of days after having no immunity at all, I sure enough felt warm, so I informed Nader who promptly checked my temperature and confirmed what was suspected.
He disappeared for a couple of minutes after telling me to go back to my bed. He came back with another two nurses and a tray full of strong intravenous antibiotics, and plugged them into me, with a bag being pumped into each arm simultaneously.
As this came to an end, I was asked to move off the bed, as things can become a bit soft in the bowels. As I stood, I can only describe what happened as a tap being turned on from the back end. I had no control what so ever and made a right mess.
I was told that this will happen to every person at this stage with the strong antibiotics. This made me feel a bit better, but it was so weird not having any control. I still had, before the antibiotics, some level of control of my bowels, even though my multiple sclerosis (MS) had been slowly eroding my sense of feeling and control of all things down there for some time.
So, be aware, this will be something all HSCT recipients will go through.
The treatment actually wasn't anywhere near as bad as I thought it was it going to be. Bearing in mind that the first day at Hammersmith hospital I was told to expect the worst I could imagine, and then some. I guess I can imagine some pretty dire situations, because neither the chemo nor the ATG took me there, although the ATG felt far worse than the chemo drugs.
I was told by a friend’s wife, who knows how to put things into context for a squaddie, that chemo is like Domestos bleach to the body. That’s why they put in a peripherally inserted central catheter (PICC) line to the heart. The heavy thick artery walls are robust enough to take the chemo.
The chemo would take two to three hours to administer. The ATG took between 12 hours to 16 hours to administer the same volume of fluid. This does suggest the ATG is so very powerful, and the body can only take it slowly without it harming the individual.
If you are going to have HSCT treatment, a positive mental attitude will see you through it. You must remember you are in a country of 61 million people, and you are in one of the finest hospitals on the planet, with some of the best people, undergoing a well-rehearsed procedure. You will have passed through the strict entrance requirements to even be there in the first place. You are within reaching distance of a place where MS can no longer hurt you.
Fast forward six months, and I’ve had tests which have confirmed my HSCT treatment worked. I’ll try and explain this with the following analogy. I am a car, and MS is a thug that has smashed me up a bit. The thug has been taken away by the HSCT, but the car remains damaged. This is the simplest way I can explain it. The only downside is that the car might not fully repair itself, if at all. I have my fingers crossed, though. A positive mental attitude should keep me going, and I will have another MRI next October to check my MS has not returned.
For me in the short term, I will chip away to try to get strength back. I used to be a hands-on aircraft engineer, and there was nothing I couldn't do. I want it all back, and I want it yesterday.
Visit www.youtube.com/channel/UCMK3P_VOUfDtKU-JWkoeArg to follow Scott’s HSCT journey.