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
Well Nick, I always say - expect the unexpected and in this case it’s a great surprise. So happy for you both so a little celebration I would say.
It’s been a long journey but worth all the stress to be able to hear this news.
Happy Highlander
Hi Nick!
Congratulations that's fab news! My marker started to rise after the 4th chemo, so that could be why I had to go for transplant.
It is wonderful news that you can look forward to her being home and getting back to a normal existence!
Debbie
Thanks Mike and Debbie
My wife has been home now for 4 weeks since flag ida and biopsy . The wait for results has been terrifying but tonight is just amazing. Dont get me wrong, we are aware of the road ahead and that anything can happen, but for right now it seems all our dreams have come true.
Its quite incredible to think and believe even the consultants were not expecting this outcome.
Still another course of chemo To go through, but imsure my wife will take that all day long as this current situation remains the same.
Nick
Hi moomy and all others.
Well this is the first day of the rest of our lives after the news my wife no longer requires SCT. We called the consultant today for a chat and confirmation of next steps.
Now only 3 Monthly biopsies to keep an eye on the markers, but as of now there are none to be found.
I want to thank all contributors on this forum for your unbelievable support over the past 9 months and I will continue to look at all further threads and offer any help and advice I can with my limited knowledge of AML.
THANKS ALL ONCE AGAIN
Nick
I do so like this and yes, let’s look for this to be the start of the rest of your lives....... and please keep looking in at the AML and here as you could be the person who makes the difference in the midst of someone's cancer storm.
Fantastic news Nick, really pleased for you both. Now try to spend more time looking forward and less time looking back.
Regards
Mark
Really great news, Nick! So relieved for you both.
Now enjoy the summer together!
Regards, Sheri xx
Terrific news, Nick, time to enjoy life again!
Mark, how are you doing?
Hugs xxx
Moomy
Hey Moomy,
I have undergone a brondoscopy of my lungs and a CT scan of my groin and stomach over the past couple of days to see if they can find what’s causing the temps. The lung test showed nothing and we are waiting for the CT results.
They have said it all just maybe my body reacting to the graft so plan to start me on stronger steroids to see if that works.
All my other counts were as of yesterday ok with my neuts over 4.5 so they’re happy with everything else. It’s all very frustrating but I know they need to make sure I’m good before I leave so I’ve stopped predicting and will be home when I’m home.
Had a stroll out and I am currently sat in the local Costa with a large latte doing a bit of people watching to pass the day.
Regards
Mark x
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