I actually had to ask my girlfriend a lot about the weeks post transplant as I only remember some of it. I figure that the reason for this was due to the fact that I was so traumatised by what was going on I think a lot of it just went over my head, also I was heavily drugged up by so many different medications and treatments that I was quite out of it most of the time.
No toast? We can’t order toast!? What’s one of the things in this country we love most when feeling unwell, toast, a good awld cup of tea with some toast. Yet I was told that they weren’t able to provide toast as making toast in a toaster has caused problems in the past with the smoke alarms being set off and as a result the fire brigade being called, this of course resulting in a fee to the hospital, so the story goes anyway. I have never heard such nonsense, how on earth can you not get toast made for you without the fire brigade being called.
One of the most awful side effects of the treatment I experienced was ulcers. Not too long after the treatment I started getting ulcers in my mouth, it makes it pretty difficult to eat as they are pretty painful, then the ulcers spread all down my throat and in to my stomach. Basically for three whole weeks I didn’t eat one single bit of solid food, I couldn’t as the pain was horrendous! I started losing a lot of weight, obviously a consequence of not being able to eat anything for a number of weeks, so I was put on what’s known as TPN, Total Parent Nutrition.
TPN is basically liquid food, it comes in a big bag and gets given to you daily intravenously when you are unable to eat the daily recommended calorie intake. It is a liquid that contains all the proteins, carbohydrates, fats, vitamins etc etc that the body needs to work properly. Great, another drip, just what I wanted, I was getting sick and tired of being hooked up to so many different drips but there was nothing I could do about that.
Back in December when I relapsed, they put a Hickman line in my chest, this was a line that would stay in my body until all my treatments were over, it was used to receive chemotherapy and other things like fluids or TPN. A lot of people didn’t know I had this in as obviously I would have been covered up. One of the other main advantages of having it was the fact that it meant my arms weren’t getting used every day for blood tests and so on, so it gave my arms a bit of a break from all the use they would have gotten if I did not have the line in. I had this in for a good 7 months, needless to say it was a bit of a pain, but at least it prevented my arms from being used so much.
After the bone marrow transplant I was left without an immune system, all my counts were rock bottom, white blood cells, red blood cells, neutrophils, and platelets, and for this reason visiting was limited. I had to live in a little bubble until my counts come back up again. It was really just my direct family and my girlfriend that were allowed in to see me. I was in such a state I didn’t want anyone else seeing me anyway. I was so flattened by the treatment that I was in bed most of the time, the blinds were down in my room and I just tried to sleep through the pain of it all. I just counted down the days until I would get out to keep me going.
I use to write my counts up on the board in my room each week for something to do, and to give me an idea of how my body was responding so I could see when my counts were improving. This particular week was when my neutrophils finally started to increase, which was the main one I had been waiting on.
Did you know that hospitals need people to donate their platelets? I was always aware of the need to donate blood but I had never in my life heard that the same goes for platelet donation. My platelets were rock bottom and so I would need to get platelets frequently, sometimes I would only have to wait a few hours or sometimes a day or two, it would depend on the level of platelet donations being made. Sometimes I would be sitting their waiting for platelets while someone was in another building donating for me. It is certainly something I am more aware about now and something I would ask people to do if they ever have the opportunity to do so.
The panic attacks…I had never previously experienced panic attacks, but between the pain, the lack of any fresh air, being hooked up to the drip machine constantly, and being confined to a small room for five solid weeks on the back of months in hospital finally broke me. Panic attacks ensued, they were awful, I would start shaking, my whole body would shake, I would start gasping for air struggling to breathe, it was disturbing. They were helped a little bit by xanax some of the time, and I found that if I felt one coming on that I just needed to try and concentrate on my breathing and this would help a little bit.
Graft versus Host (GVH) Disease
GVH disease is something that occurs post transplant, as the body tries to accept the new marrow from a foreign body. It can show itself in a number of different ways. It’s good to get some of it but not too much, it seems to be a balancing act. Too much of it would mean your body is trying to reject the new marrow which wouldn’t be good. Thankfully I did get it but not severely, however it did cause some awful awful side effects.
I was vomiting a lot, trying to sleep was impossible, my hands and feet were so red and hot it was like I had put them in the fire, they felt like they were literally burning, and I just generally felt awful. Not even sleeping tablets or xanax could help me sleep. It’s when I developed the GVH disease that they put me on the morphine pump.
I was hooked up to a morphine drip 24 hours a day due to all the pain I was experiencing, so I was fairly out of it for a couple of weeks, but at least it helped with the pain. I still to this day have the bruises from where the morphine pump went in to my stomach.
A Thoughtful Gift
The below frame was given to me by my girlfriend’s brother, I found it to be very thoughtful and surprisingly accurate. I had this up on the shelf in my hospital room and I lost count of the amount of times I read over it.
“I am a distance runner. I’ve been trained to keep going even when it’s hard. When it hurts. When it sucks. When I don’t want to. I look past it. Relentless forward progress to the finish. Call it what you want: stubbornness, endurance, determination, guts. Deep down, I don’t know how to give up, and it’s always worth it in the end.”
I can’t really thank the nursing staff enough, the staff who looked after me day in and day out, night and day. Under staffed and over worked, they have it tough, and I can’t imagine what it must be like for them to have the job they do, looking after all of their patients so well. It must be quite an emotional career for them as they see the ups and downs for different patients.
I got to know some of them quite closely, and they really helped me get through my time in hospital. I have a few memories of when they went over and above for me, to help me, to look after me, and to make sure I was being looked after, and I won’t ever forget them for that.
On Thursday the 30th of March, five weeks after being admitted to begin the process of the Bone Marrow Transplant, I was discharged, allowed to go home. I had to be within a maximum half hour drive to the hospital in case of an emergency, so I wasn’t allowed home to Co. Wexford and continued staying in my girlfriend’s family home.
Happy days, time to get out of here and go home to recover, again. Now PLEASE take me out and satisfy the pizza craving I have had for over a month!
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