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When I think back to how I got here I feel rather amazed I have made it. You see on receiving my relapse diagnosis in October last year, my consultant made a suggestion that I may have to go for a bone marrow transplant. We had no clue how this would happen, would they saw my bones in half and scrape my old bone marrow out. You laugh but I have no idea at this point what or how this was!
So here it is, the journey of stem cell transplant. I remember arriving at the hospital and going in to see the doc. I almost hid in his room, I was moving around a lot and quite obviously agitated, nervous and tearful as he explained all the scary side effects. Possible heart failure, kidney, lung, liver failures were very real complications. A lady even died in here having a transplant two doors away from me on the unit. Very upsetting for us and all involved; “father please comfort that family in Jesus name”.
The chemo “BEAMS” is relentless; you have to have a Hickman line fitted. I was petrified!
This was mine fitted on the first day. But running up to having a transplant I had many things to do, I needed a pet ct scan, Ct scan, X-rays, 8 molars to be taken out at the dentist (I have a phobia of the dentist). It went ok but I was so dissapionted, the needle biopsy which took over an hour and was unsuccessful. The op to remove the lump from my neck happened on Christmas Eve. Then there was the dreaded stem cell harvest.
It’s an interesting process, needle in 1 arm entering a machine that separates the stem cells by spinning them in a machine, collecting the stem cells and then putting the remaining blood back into your body. Each collection lasts 4 hours, living still for that time. Peter’s son across from me had gone to get a burger as he had a femoral line in. And was able to be harvested that way. I was so jealous as I couldn’t move my arms at all. I will not bore you with figures but it took 10 consecutive days of injections to boost whit blood cell count before I could go in, boosting stem cell production in the hips, breast plate and long bones which made me ache quite a bit.
So going back to my stay in this room, you have BEAMS chemo for 6 days and nights. Constantly attached to the pump on a stand every toilet, shower visit you have cables hanging out of you and beeping whilst you sleep. The feelings you get are like waves washing over you. It’s pretty grim but doable, then the miracle happens; your stem cells are given back to you. It’s amazing science and it truly is a miracle that is life changing.
The whole ward smells, not of me but sweet corn for days after a transplant but the patient cannot smell it at all. The only complication I had was a slight bug in the line that caused a small and insignificant infection inside my line. It became puss filled around the site etc. But nothing major. I did however feel I was going at some points twice to be exact. But here I am 4.30 am writing this.
I am apprehensive about leaving my angel button, the button you press and a nurse comes to you and brings you what you need. I did clash with a couple of them and kept some away from me. But on the whole, it was made nice by them all. The doctors really knew their stuff.
Each day I was in this room, I created things to do. CS being a major distraction
This group or (let’s have it right) amazing people made up of family, friends and people that have suffered or cared for a sufferer, has been my life line. Set up 2 weeks before diagnosis.
I have realised though that there is no one here to offer emotional support, that has done the time in the room. It’s real difficult when you can’t reach out to someone that has been there. I have however been fortunate that I was able to draw on the experiences of people from all around the world in CS. It’s an amazing place where you can be yourself and there is always someone around the world to chat with that’s up and willing to chat. I thank God for each and every one.
Here is a screen shot of some of the site. Don’t be afraid to join we will accept you for who you are. The impact on your body your not ready for at all and you change who you are for a week in here. Whilst you are neutrapenic ( o.oo ) on all blood counts except a few.
Ok so it’s all done, and now after my pentamidine I will be going home, wow!!! It’s gonna be a reality soon. Me and Andie who has been by my bed from 11-8 every day washed my clothes and cared for me will be going home. I really want a pic outside under the hospital sign. Like rocky on the steps of Philadelphia. It will be my own significant of the END of a 7 year long battle.
I have done all I can to face this head on, never once did I say “why me” just “I can” I learned yesterday a friend of mine died of cancer whilst in here. How very cruel this disease is. The treatment I had was the most inhumain thing I have done in my life so let’s hope it keeps it at bay, so I can bless many people in the future.
Please follow my blogs and comment I don’t know whether my way of sharing is beneficial to you or just boring. I just don’t know but I would appreciate feedback. Please join our group as well. There are people as far as California, and Australia with us.
Well speak tomorrow and I will let you all now how release day has gone. Going back to sleep then it’s onwards and upwards to my new life.. Rejoice with me.
Have a great day!