Good evening everyone,
I’m Sam and my Dad has been diagnosed with AML Leukemia. I’m a little scared of writing this first post in case I just waffle and in case it all makes it a little real to admit its actually happening to him.
I happened upon the forums while I was looking for more information on bone marrow transplants. I hope you don’t mind me sharing our story with you all. Its difficult to know how to explain it all as its
We are now sitting watching Doc Martin after my Dad has had a full day of tests at Addenbrokes in Cambridge. He’s so tired from being shuttled backwards and forwards between departments for testing but he’s trying to be as normal as possible. I don’t blame him.
Dad was diagnosed after he was having some blood tests done for a review of his epilepsy pills. It was discovered that his white blood cell counts were low. Very low. He’d been on the same drugs for so long that the doctors assumed it was the pills he was having was causing the low counts. He was given a few types of pills to trial but with little to no change in his counts. Eventually he was asked for a bone marrow test to be done at our local hospital. A couple of weeks later and he was diagnosed with Leukemia.
I had been at home when Dad had gone in for his bone marrow test, but when Mum and Dad Skyped me after the results I was already in Florida rehearsing shows for a cruise ship. I ended up quitting the contract the following day after a long night of little sleep, deciding that I wouldn’t be able to concentrate or focus on what I needed to be doing despite Dads strict instructions to not come home. It was clearly pointed out to me that if I quit I wouldn’t be able to be re-hired as that was the company’s policy. I got a flight that night and arrived back in the UK the following morning surprising Mum and Dad (I didn’t want them to worry while I was flying). Soon as I saw the relief on my Mum’s face I knew I had done the right thing by coming home, despite the personal prospect of losing the job I had been doing for the last 8 years. I’ve been dancing all my life and always knew that an end would eventually come up. It’s not the way I had envisaged it but I’m a believer in fate.
I arrived home the day before Dad was due to go in to hospital to start his chemotherapy. Dad’s first round of chemo was by all accounts fairly smooth. Most of his side effects, except a few, were remedied with a small bucket of pills daily. He of course eventually lost his hair (or what little he had left. We shaved it before he went in, he didn’t want to look messy for any visitors). There were days that were quite depressing and down spirited during his initial month stay at Ipswich hospital. The daily, hourly, minutely monitoring was quite a strain for him. Lack of sleep really pushing him to the verge several times as they poke, prod and test you for everything. He eventually was allowed to come home and was able to get some proper rest and had some friends come to visit him at home.
We are now sitting at home after his second round of chemo. He only had to stay in for his actual treatment this time and has been allowed to recover at home. Unfortunately he ended up having a trip back in to hospital after a raised infection marker turned up on a trip to the day clinic. Turns out he had an infection in his bowel. He was monitored and given antibiotics and was allowed to come home again after a week but is still in quite a bit of pain from it.
Sadly during all of this my Nan, my Dad’s Mum passed away in the local hospice which has been the hardest part of all of this. It was expected however so there was some relief. We were told in April that she only had a month left at the most, but due to the care that my Aunt was giving her she lasted many more months as was able to stay in the comfort of her own home until near the very end. Dad was let out in the afternoon a few days before she passed so we were all pleased he could see her one last time. Since she passed its obviously been very difficult for him as he feels like he isn’t able to help with funeral arrangements and the house clearing etc. but along with the pain and the looming bone marrow transplant its more than hard for him, for all of us.
I’m trying to remain positive and focused around him, help keep shining a ray of light on any situation we are facing but its hard. Just hard. I try to make sure we talk about anything that has happened that day. I know he feels like he unloads on Mum so I try and take some of that burden for her. We have been quite open about whats happening to our family on Facebook and we receive daily messages sharing love and well wishes which I always share with Dad. If I see a nice quote or picture I try and post it to his wall so he finds it when hes looking online. Some friends have also come forward with their stories of cancer sufferers and survivors, some that we didn’t even know about which has been invaluable to us to hear how others have coped.
Mum has been an absolute rock for Dad. She’s been there everyday for him. Every time there has been visiting hours, she’s been there. When the smell of hospital food has made Dad feel sick, she’s been there with hot food that she’s rushed out the door and to the hospital to make sure he’s eating. I’ve taken to calling her Matron. She is honestly Superwoman. She has somehow managed to find a way to do everything and more for Dad and for us as a family, not to mention baking shortbread, cakes and homemade bread! All beautiful and tasty! What a way to cheer ourselves up after a stressful day than with a big slice of Mum’s cake. I wish she would let me do more for her.
If you’ve made it to the bottom of this post then thank you for taking the time to read through our story. Its still massively long (and this is the edited version!) but typing this out has helped me put my rollercoaster thoughts and feelings out without having to put any more pressure on my Dad, Mum or Sister.
Dad is brave, so we are brave. We are brave and so is Dad.
