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
Hi Hopefulmummy,
Thank you for the kind words and hope you’re are doing well and slowly getting back to normal?
Nick, good to hear the biopsy went well and everything crossed for you all from here.
Things are going ok here and I’m on day -4 with no problems. The 1st 2 days of conditioning therapy have been extremely short and a bit of an anti climax if I’m honest.
The hospital is nice, with fantastic eating options both internally and near by so I found myself going out and strolling down to a beautiful Thai restaurant last night and spoilt myself before I start going off the food. The only downside is I am in a shared ward at the moment which is a bit cosy to say the least. This would no bother me as I am quite a social creature but unfortunately most of the others are not and just have their curtains pulled across constantly. The old guy in the next bed is pleasant though so we chat but he unfortunately has memory loss so we might revisit the ame conversation a few times in the day.
Hopefully soon my levels will drop and I can get moved in to one of the private rooms which are very nice and even come with all the mod cons including music system and even an X-box ( might be wasted on you that one Mile).
Anyway time to go as breakfast is on its way around and to my joy, they even do a full English. 
Regards
Mark x
Just catching up as I am running in circles at the Macmillan Volunteers Conference and Awards.
Good to hear your progress Nark and ((hugs)) all round.
Hey guys, thank you for my re-re-Birthday wishes I certainly won’t forget this one.
On day +8 of my Allo and a tough 8 days it has been. The Cyclosporine has been quite harsh on me and I didn’t eat for 6 days with nausea which we struggled to control. I’ve been on syringe driver the past few days and thankfully I’m beginning to eat a little again and not sleep so much. I must admit I’ve found this phase of the transplant a lot different and certainly more demanding than at the same stage during my Auto. 
I don’t think this was helped by the fact that I was in a shared ward until day +3 as there were no isolation rooms spare. The ward had 5 bays and everyone else kept their curtains closed which made it very small and some were struggling physically and one mentally which made it even worse. I was eventually moved late Saturday evening to my own room but was then moved back 2 hours later to the bay as they had an infection issue and needed my room. I’m not proud but at this point I started swearing at a few people including the nurses and was found another room which is where I still am. To make matters worse the ward next door to the bay is having a refurb with constant drilling all day and I can’t describe how stressful I found those few days especially on top of the constant nausea and really felt low.
The hospital has been made aware of my feelings and I will make my feelings known even more once I leave as I know they are using the shared wards to try and enable more transplants to take place and only move people when they are neutropenic and they simply don’t have enough beds.
Anyway I’m happier now I have my own room and are now waiting for the donor cells to start doing their magic and see what problems that brings. 
Hope everyone is ok?
Regards
Mark x
Oh Mark, so sorry to hear your news.
An Allo Stem Cell Transplant journey can indeed be rough, but the addition of the practical issues you were facing just makes it that harder both mentally and emotionally. The one about renovation work going on is such a hard one to deal with and is often done with no real thought to the knock on effect for patient wellbeing.
Yes, you do need to make your complaints known clearly...... it’s not an over night - short stay procedure you were in for...... it is a life or death roll of the dice time in your life and they are knowingly playing with the scales.
But good you are in a room and making progress.....and further down the line these issues will get fuzzy at the edges.
This January I was in for 7 days with Pneumonia in a new refurbished room........ but the heating was not working...... it was Baltic. I phoned direct to the Hospital Trust Facility Manager and politely asked him to come to my room (or I was going to the local paper)
To my surprise he came, he initially said there was nothing wrong....... but I asked him to take his coat, jacket and jumper off and sit and talk with me for an hour..... he lasted 15 mins. He went and got a heater until another rooms was found.
Hang in there.
Hi Mark
I'm a bit late to the party, but echo what Moomy and Mike have both said. Once you feel well enough to hold a stern discussion then most definitely complain through the right channels. I think you were more than entitled to say a few naughty words, though I bet the nurses pick straws over who will have you each shift now
I am pleased you are now in your room (still complete with Xbox I hope!) and doing 'okay'. I hope the meds continue to work for you and you manage to keep a bit of food going in. I have everything crossed that the donor cells are indeed starting to work their magic now, but not causing you too many difficulties.
All well with me at the moment - I had my first re Immunisation today (PCV/Previnar) so am hoping that I don't react!
Xx
HopefulMummy123 x
