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
Line Infections - pants.
Lets look for this to be fixed and that you continue to improve.
Hey guys.
Well I’m nearly 2 weeks old and apart from the temperatures I’m generally feeling ok and much improved on this time last week. I’m eating more but I’ve had the syringe driver taken off today so fingers crossed and we will see how that goes.
One for my fellow Allo transplanters. What day did the donor cells start to graft in making your neuts rise and if you suffered GvHD, when did first notice this and what was it. I have developed a rash over the past few days but it’s not itchy or sore and doesn’t cause any issues.
On a separate point, did anybody get told they weren’t allowed to bring there own food in? The food in here is on par with pig swill so I’ve been asking my wife stock my fridge with microwaveable meal from M&S and eating one of these each day, mainly pasta dishes but they’ve said I shouldn’t be doing that so I told him to eat some himself and then tell me. 
Regards
Mark x
Hi Mark
Good to hear things are getting better!
I left hospital 16 days after my allo. I had a fairly easy run apart from sepsis after 2 days! But once the iv antibiotics kicked in after a few days I began to improve quite quickly. Can’t remeber when my counts began to improve but they must have been ok by day 16.
GVHD came after day 100 when the cyclosporine was stopped (gradually). I think it happened around 7 months post allo. EBV kicked in about 4 months post allo.
i guess with the food they are worried about you being neutropenic and from memory there is a list if things you shouldn’t be eating whilst neutropenic. I imagine they just want to ensure you aren’t eating anything on the “banned” list!
I lived on tinned Heinz tomato soup and toast which the nurses would make for me any time of day or night when I asked. When friends asked if I needed anything it was always tins of tomato soup I asked for when they visited.
Hopefully you will be home soon and can get some decent food into yourself.
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Ps sorry about typos. Sitting at Barts waiting for late effects clinic so using my phone!
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
