Friday, 3 April 2015
Time changes everything.
What a difference time can make.
Two years ago:- I was losing weight, coughing badly and feeling very, very run down, but as that was a general thing for me with the ITP the previous 15 odd years I didn't think much of it. In fact due to the platelet count being so high and stable we all thought it was great, didn't really think much of the other stuff than it just being a bit of a cough or bug. After a few months I realised this is more than a just a cough and then other symptoms came along that's when I knew that I had cancer, but the doctors would never say that unless they were certain. After tests and waiting and more tests lo and behold it was, original diagnosis of Marginal Zone Lymphoma. I wasn't upset by finding this out as, well, I already knew and had told my dad what it was. The hard part for me was telling my mum.
RCVP:- A day treatment every three weeks, I didn't have many problems with this, I even walked home after one of the cycles to try and clear my head of the piriton, I hated that much more. After a few cycles of this I didn't feel any better and told the doctors it wasn't working, they checked and it wasn't. They then decided to go onto a stronger chemo.
RCHOP:- this was also a day treatment, I remember going into hospital one week to get the RCVP and was meeting a friend who was over from Scotland for lunch in between blood sample and chemo, and they decided that the stronger chemo was needed. Lunch was a priority and quite enjoyed it, I think most people would be upset that their treatment wasn't working but how would being upset help in any way, shape or form and enjoyed the lunch. The RCHOP itself was stronger and felt nauseous after, and the next day it felt like a very bad hangover and then some. One thing I noticed about the this treatment was if you went out drinking the week after (which was common practice) you got drunk so easily with you liver and kidneys working so hard breaking down the chemo, you need to enjoy yourself still though!
During all this I was getting out on my walks around the area and you could notice that the RCHOP was working better than the RCVP but still having problems so I was sceptical if it was working as well as it should be. After it stopped though you noticed that things where soon deteriorating again and after some tests, waiting and more tests and time, the coughing was as bad as it had ever been. Which takes us to exactly a year ago I started onto a stronger chemo, ESHAP, this was to harvest stem cells from myself to transplant back in.
ESHAP:- This was tough but for not the reason you would think, the running to the loo was the worst part with the gallons (bit of an exaggeration) of water they were pumping into you over the week and it wasn't easy hoiking around 3 drips to go anywhere, although I was more concerned about the rattly trolley and waking up the other in the ward. After there was a real drain on the body with lying around for a week and the water retention was really bad for me. I was glad when I started getting my own room and left to my own devices and didn't feel like I had to entertain others cause they were sitting there staring into space, not an easy thing to do in a boring room. Although I had everything I needed TV, books, games, paper to write and draw on, and internet.
This exact day last year I had to go back to hospital to check on the counts after my first ESHAP, wasn't a pleasant experience, I wasn't used to being around a large number of people and my tinnitus started with the ESHAP so couldn't hear much.
After each ESHAP I felt progressively worse which is how I believed the way chemo was supposed to be, if I can cope with it then the cancer will surely be able to cope with it, which is one of the reason why I didn't think the previous ones were working.
Stem Cell Harvest:- after a few cycles of the ESHAP they were confident enough to take the stem cells for the next stage, they were in credibly pleased with how good a sample they were able to get from me and how quickly, normally they have to do it over two or three days, they got it done in three hours, they were pleased, I was pleased. Now the waiting game to get allocated a room to stay in to get the BEAM chemo to completely destroy my immune system and the stem cells can grow it back again, had to wait a few weeks. Thirty days in isolation feeling like crap, skin peeling, not able to eat, drugged up on morphine, not able to go to the toilet without support and getting weaker and weaker each day. Then eventually things started to turn and I started to feel like I shouldn't be there anymore, so I got certain foods in that I could eat and started exercising, not much more I could do than that and I hoped I would start producing white cells again so I could get out, and after a couple of weeks I was released.
Recovery:- Once out for a few days I knew I was better than I had ever been, medically that is, certainly not physical, that was the next job and not a simple one and this is why I have wrote this blog.
Everything started off very slowly and gradually building up to walking alone and gradually increasing the distances and regularity of it, I enjoyed it, the freedom, fresh air and exploring the world, after a while I started using the car and going for walks expanding my explorations to the rest of the country, a real incentive to do more and see our wee country, a beautiful place, building up and up and up, through determination and persistence, even with my sore knees and dodgy bones, which makes me feel like I accomplish more than just a walk, it's a challenge and I love a good challenge.
Finally on 2nd April, I went for a walk in Donard Park, one of the paths was too dangerous for me and I felt unsafe and so I went back down to the path, thinking to return to the car and go elsewhere but I ended up taking the long way round and I got to the top of the forest and saw the path up to the Mournes, I was going to turn and go back down at this point too but there was an Ice House a little further up. I followed a group up to there but didn't stop at the Ice House and went on past and kept going, the path was not dangerous and the views where getting better and better, the hill didn't seem to be taking too much out of me, in fact with all the walking I had been doing it was fine. I got to a point where there were steps and finally took a seat and a think.
I knew I would be disappointed in myself if I didn't try to go on, so I turned my back on the return journey and went for it, it was not easy, stopping what seemed like every couple of meters to get my breath back and rest my thighs a little. Over and over this happened but I never thought once about having to get back down again from where I was, but I kept going up and up and.... made it!
One of the most profound moments for me sitting up there looking down at everything I was above and the distance I could see, thinking of the challenges that I've faced over the last few years and knowing that nine months before I was barely eating, bedbound never mind not being able to walk, facing what could have been it, but fighting on, knowing that I could make it with all the help and support of my friends and family to push me along to finally be perched between Slieve Donard and Slieve Commedagh at over 500 odd meters up in the air after walking up from 0
One of many good things to come, thank you all, you've made it easy.