Hi Guys,
I posted the following on another forum earlier this week which is purely for Hodgkin’s but thought I would share it here as it sums up my emotions perfectly at the moment so sorry if you’ve already seen it.
Really enjoyed what will probably be my last run for a while this morning as later this week (6th) I will be admitted to Plymouth hospital for my Allo stem cell transplant in the hope that we can finally get on top of this horrible disease. I’m really going to miss it and not just the fitness aspect but also the social side and especially the many wonderful friends I’ve made who have supported me in my battle over the past year or two.
It’s hard to believe that not the long ago I was diagnosed with the relatively rare blood cancer, Hodgkin’s Lymphoma but can remember the consultant telling me it was very treatable with a cure rate at nearly 90% but yet here I am nearly two years and 6 failed treatments later literally still fighting for my life but yet still feeling truly blessed to have so many wonderful people in my life, the ones that have kept me believing throughout all this, my amazing family & wonderful friends.
Thursday I start my conditioning chemo before I receive my completely new stem cell and immune system from my donor in Germany who has kindly agreed to do this. The cells are a 9/10 match which isn’t perfect so I’m fully aware it comes with increased and life threatening risks but I will be forever grateful to this person for potentially saving my life and giving me a chance.
I’m not going to lie and act all brave so I will just be honest and tell you how scared I am. I’m scared I won’t be there to watch my daughter Jaime graduate university and get her dream job as a nurse or walk her down the aisle, I’m scared I won’t be there to watch Oliver my eldest boy become a mechanic, pass his driving test or take him for a pint, I’m scared I won’t be there to watch Charlie my 8 year old become an aircraft engineer or even better score the winning goal for Leeds Utd in the Champions League final. I’m scared I won’t be able to grow old with Marissa, the woman I love with all my heart and the fantastic mother of our three children but mostly importantly I’m scared I won’t be there to tell them all just how much I love them and how proud I am of them all. The past 2 years have been horrible for me but it’s even harder on these four and especially the children. This should be the happiest and most care free times of their lives but it’s not and even though it’s not my fault, I am responsible and that really upsets me.
The past few months I’ve spent chatting with some amazing people online including this forum who’ve gone through this and come through the other side, offering me comfort and advice and even though I try to focus on the positive stories the fact is for other people it goes horribly wrong and it’s only human to reflect on these stories also but unfortunately this is my only realistic chance left for cure so it’s a risk I’m prepared to take.
The next year or so is going to be extremely tough and at times scary with a roller coaster of emotions along the way with good and bad days but with the continued love, support and understanding of all the people around me and just a little bit of luck for a change, I believe I can see this through. Wish me luck. 
️
Regards
Mark
Afternoon Mark
Nice to read an update.
No advice on the donor cells grafting, but I was told no home food 
️ Though I had no fridge (unsurprisingly seeing as my isolation room wasn't modern enough to even have plumbing for a toilet!). There's was a list on the wall saying what was and wasn't allowed, and what the kitchen could provide and when.
I used to work in catering, and I see it from both sides - you want nice food to eat, and food aids recovery, yet they can't monitor and log your fridge temperature 3 times daily, check food storage is correct, check if opened packets are labelled etc etc and that's before you bring in the issue of a neutropenic diet.
I was told only tins of soup and packet biscuits from home. I asked for some hot water to be put in a pot noodle and was told no 
Though as this seems to be all you can manage - could you come to some sort of compromise? Not entirely sure what or how - but you could try just arguing the fact that some food is better than none!
Here's hoping you are grafted and home soon where you can enjoy so 'proper' food with the family.
Xx
HopefulMummy123 x
Good to hear you are on the up Mark.
I got home on day +20. My Neuts did nothing for 15 days....... then we started G CSF Injections each day to help things along but it took another few days for anything to move........ I was sent home when with my Neuts at 0.9 as they wanted me out as there were some bugs going around........... I started to get pains running up and down my spine on day +15 and my nurse said that for some this was a sign of the BM kicking in..... like birthing pains every minute.
I was doing a G CSF Injections each day for a few weeks before my counts come up above 2.00
No GvHD in the unit and was not until Day +85 - 157 some minor skin GvHD kicked in. Then again on day +284 that had me getting blood transfusions every two weeks.
The food at The Beatson was not that bad, but we could take in Microwave Meals from local M&S and use the little kitchen in the ward. We had a shelf each in a large larder fridge and freezer to keep stuff....... but it had to all be hot food with no salads.
Keep looking at the light Mark.
