Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
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. ️
Good morning Mark and a well summed up look into the brain of someone going on to the Stem Cell Rollercoaster.
Your "what if this does not work" thoughts........ were my motivational thoughts. These very thoughts I tuned up side down and used them everyday during the long days in the SCT Unit to drive me on when I was down and help me when I felt like giving up.
I don't wish you luck!!........ I and everyone on these forums wish you TOTAL success.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Ditto to The Highlanders last post. My wife is going to UCLH tomorrow for 5th biopsy, we know it's a very unlikely scenario but maybe, just maybe, the mutation has gone, but SCT likely in next few weeks if not
Keeping everything crossed for a successful outcome for you Mark.
I read your post with a tear in my eye( well a few actually) as it sums up what every person must be thinking before their transplant or indeed any life threatening situation- it was my daughter that had the transplant but I felt the emotion as well and I’ve no doubt your wife and kids will be feeling the same- so best of luck, and before you know it you’ll be through the other side and lookImg forward to the rest of your life- 8 months post transplant and they told Katy she could have gone back to work if she was in an office but because she is a sick children’s nurse they won’t let her go back unless they can find her a job without the sick children . So life will get back to normal!
Thinking of you all.
yes I know, I replied to you on that other forum, but my wishes are the same; I’m sending lots of positive vibes as you face this head on, remember they are getting better at this all the time, so rely on your skilled team to get you through it!
remember it’s a marathon not a sprint, one day at a time......remember the long game, and what you’re aiming for, and remember that everyone here is egging you on!
Good luck today Mark
I hope that everything goes well for you with the allo. Try not to be concerned that it is a 9/10 match.
My donor was described to me as a 9/10 mismatched donor when I had my allo and six years later I am doing fine.
Let us all know how things are going as I know we will all be thinking of you.
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Go, Mark, go! And know that we are all thinking of you
Good morning Mark and wishing you all the best for today.
It is fitting that you are having your SCT today on the 75th anniversary of the D-Day Landings.
When SCT was first described to me by my first consultant he described all the Chemo and Conditioning as the carpet bombing of my body and when the Stem Cells were put in they were the SAS given the job to take the land, to take every nuke and cranny of the body and win the war.
My team thought I was nuts as I was playing the marching tune of the 2nd Gordon Highlanders as my grandad was the first piper over the top at 7.30am on the 1st July 1916 on the first Battle of the Somme. He went on to have 10 children, 24 grandchildren, 56 great grandchildren and now a 100+ great, great grandchildren........ like my grandad, keep your eyes on the greater good Mark.
Thank you for the kind words, feeling quite relaxed this morning and just getting ready to leave. It’s funny you mention the D-day landings Mike as below was my post from the Hodgkin’s forum I wrote earlier this morning. Again sorry if you’ve already read it Moomy.
75 years ago today 150,000 brave men and women from all over the world began an operation that was probably a major turning point to rid Europe from the Nazi Germans. Today I enter hospital to begin my stem cell transplant which will hopefully save my life thanks to a very kind and unknown donor from Germany. Although we should never forget, when we forgive, move on and work together we can often achieve wonderful things. Good luck to all the others who are beginning their journey today. ️️
I will keep you all posted as to how it’s going.
Well I'm not a crier... but... :'-(
You WILL be there for those lovely children and amazing wife of yours for all of those milestones, you've gone through too much to stop now!
Good luck today Mark, you've got this!!!
Biopsy went well, a little surprised when the doctor told us he was going to use a small hand drill for the procedure!!! Thought be was joking but no it was real. Luckily the 2 anesthetics used were left for a while and helped a great deal.
In reality my wife thought this was a little less painful than the conventional hand turning method to carry out the aspirations and bone sample extraction.
Now the 3 week wait for final results, really hoping and praying she is the 1 in a million cases that are mutation free. If not we will face the treatment with strength and belief.
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.
sounds like that appetite is still good, don’t forget the icing with Melphalan! Good to hear from you.
I'm on puppy-sit duty (he’s 19 weeks old) for a weekend, daughter is off to a friend’s wedding today!
Great to hear from you today! Yes all is OK with me thanks, a few niggles but nothing terrible.
If anything, I am slightly jealous to read you get the option of a full English?? I could've killed for a bacon sandwich when I was in, but just got laughed at when I asked :-( maybe cross border differences aren't all that bad sometimes!!
I am amazed you are feeling well enough to go for a Thai too - so glad you are making the most of it.
Hopefully you have a new 'inmate' on the ward for a couple of days that is a little chattier! The weekends always seem to bring bed rearranging on my haem ward!
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.
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