Hi all,
I was diagnosed with AML in October and am 51, my journey so far has been very, very rough. I also have severe anxiety and lost dad to Bladder in August and my mum died of glioblastoma 6 weeks later. They weren't elderly, but bizarrely both died aged 77 years, 8 months and 12 day old. My sister also had breast cancer.
3 days after mum died, I was told I had blood cancer.
I was admitted to hospital a week early because a tiny scratch resulted in a nearly amputated finger, I had to have 2 operations on it whilst also commencing my cancer treatment. The first op the anesthesia didn't take because of all the acidity, It would never have worked (I was told this was the reason by the 2nd anaesthetist) so I was awake and screaming throughout the entire procedure whilst on the operating table having to be held down. I will never forgive that surgeon for choosing local and not offering general.
I was in a spectacularly bad place and I will likely never recover from the grenade that was thrown at my family.
Cut to hospital admission I was almost dead inside. I was supposed to be there for 5 weeks, but infection after infection, sepsis twice and I never left for 4 1/2 months. Everything about it was a nightmare. I was in a foetal ball for long periods. The problem I now have is that this whole 4 months is like a massive black hole in my mind. I found the Flag- IDA unbearable, I'm now going to have fluorodarabin and I'm expecting far worse. My anxiety is often through the roof and during treatment I can shake uncontrollably for hours.
It starts tomorrow, I'm in my room in Kings, I've already been here 2 weeks because I came for my dental and my temperature dropped whilst in the outpatients, I had another infection. It's like history repeating itself.
The one chink of light, our one remaining family member, my incredible big brother is my full match donor.
Cut to right now, I'm alone with my thoughts, I'm beyond scared about the chemo, the amount of pain, the anxiety, but especially the chemo. I'm scared about how well the various medications will work and do you get them quickly, the discussion including shringe drivers and palliative care teams for pain, the GVHD and my ability to bear the treatment. I'm especially terrified of the night times and the skeleton staffing.
Can anyone try to help me with the actual realities of this whole next 3 weeks that are more positive than this. Crumbs of comfort. Thank you for listening.
Hi Little-Else ....... it looks like the Community Team have fixed your post.
You certainly have had some challenging times over the past years..... but now it's all about looking forward as you are now on the start line for Allo SCT...... a treatment that can change your life.
I did put up a reply to your first post in the AML group and in that post I did say that although have/had 2 rear types of Non Hodgkin's Lymphomas...... I have also had 2 Allo SCTs..... (June 2014 then Oct 2015) with cells from my brother so I know the journey you are on rather well.
Cut to right now, I'm alone with my thoughts, I'm beyond scared about the chemo, the amount of pain, the anxiety, but especially the chemo. I'm scared about how well the various medications will work and do you get them quickly, the discussion including shringe drivers and palliative care teams for pain, the GVHD and my ability to bear the treatment. I'm especially terrified of the night times and the skeleton staffing.
Your text above sounds very familiar...... as I have seen these concerns often and indeed in the early days had the same thoughts........ my guess is that these concerns are most likely based on what you have been told by your SCT Team and often in what you read in the information you may have been given..... but on the whole these are extreme case and not the norm......... Consultants are duty bound to highlight worst case scenarios.
Over the past 15 years I have talked with a large amount of people who have been through Allo SCT both on this support community but also on a Lymphoma specific platform and 95% will say that the process was nothing like what they have thought it would be...... yes some folks have some bumps on the road but SCT is a very effective treatment.
What chemo (conditioning) are you having to take down your immune system?
Where are you being treated at?
My story is rather complicated See my story ...... but in way of some encouragement…… I was diagnosed in 1999 age 44 when our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and as a family we celebrated 9.5 years since my last treatment.
This can be done - always around to chat ((hugs))
If you have actually started your conditioning protocol you should have been given a copy of the protocol sheet detailing everything that is being done on each day leading up to your Allo SCT day and after.
You first day on the conditioning is identified as say -7 …… this means the number days until day 0 you transplant day when you get the stem cells…… then it goes from 0 up using the + sign say day +1, day +2….
If you don’t have a copy of your protocol ask for it as it helps you understand when and what happens each day.
