Five years!
Where did the time go?
Nestled in the depths of my wallet, with a loyalty cards from the local curry house and the local airport is my NHS Prescription Charge Exemption Card. In the UK anyone who has treatment for cancer, or for the effects of cancer, can apply for one of these cards and once you have one all of your prescriptions are free, no matter what the prescription is for.
It took me a while to find this out, no one in the NHS told me, and it was on the Macmillan website that I found the magic form number (FP92A) that I had to ask for. I received my card in the post the same week I started my chemotherapy and was daunted by the expiry date of 2nd January 2015.
Back then, very ill and very scared the year 2015 seemed impossibly far away. A time that I daren't contemplate actually reaching. Outliving my Prescription card was one of the targets I set myself whilst bored out of my mind in the isolation room that became my home for much of the following months.
Immediately after my treatment, along with my Irradiated Blood transfusion Card, my Free Prescription Card, took pride of place in my wallet. Used to score the mountain of antibiotics I took for six months and then hay-fever medication through the summer because once my leukaemia had gone my hay-fever came back.
Much like the discomfort, thoughts and worries of that time, slowly and almost unnoticed these cards have drifted into the background as the years have passed. Replaced by work ID cards, credit cards, and a photo or two of Emma as a toddler the corners of which are now getting dogeared and worn.
She's a proper person now with thoughts and opinions and endless, endless chatter. Her birthday this week is a reminder of exactly how long I've been out of hospital. The day she was born, three days after I got out, looking forward to now seemed like an impossible eternity; now looking back to then seems like only a moment has passed.
In those five years I've walked 27 miles through London at night to raise money for Cancer Research; I've spoken at Macmillan events of how they helped me through diagnosis and treatment; I've met the amazing founders of Shine Cancer Support who are working to make the lives of us 'younger' cancer sufferers and survivors at least a little better; and I've been in a room with more than a 100 other Hairy Cell survivors one of whom was a spritely 73 years old.
I now know of two septuagenarians, still living, who were diagnosed with HCL in their 30's. Surviving from a time when today's treatments were to them probably also a distant and seemingly impossible.
Its hard now to pick the next landmark to aim for: The Next Check-Up seems a little short term; Giving Emma Away a little far out. Right now I can't think of specific targets to hit, I have no bucket list. For now then I look forward to experiencing more of the impossible and also more of the ordinary: Sunsets, rain, wine, friends and more of that endless, endless chatter.
Thank you for taking the time to document your journey. Just diagnosed and preparing for treatment...this has been so helpful.
ReplyDeleteHi Eric,
DeleteThanks for taking the tome to comment. Best of luck with the treatment.
Rich
I enjoyed watching your blog as the time for my Cladribine treatment approached. I'm 48, so somewhat of a youngster for this disease as well. Otherwise very healthy. I must admit that the amount of time you spent in the hospital had me a bit worried whether I would end up in the hospital as well and for how long. Starting October 19th, my week of treatment was uneventful, but I did end up in the hospital for 3 days and 3 nights a week later with neutropenic fever and an allergic reaction to an antibiotic. However, today I had very good blood test results which are near normal. I no longer have that feeling of being tired to my very core. I hope that continues. How do you feel day to day at this point? Have you noticed much of a difference in how you feel now compared to just before you had your treatment? Here's to a lasting remission...
ReplyDeleteBrian
Hi Brian, I am glad to hear you didn't spend anywhere near as long in hospital than I did. From other's I have spoken to my experience seems to be at the extreme end, at least for those who have gone on to show a remission.
DeleteNow, five years on, the fatigue I felt in the first year is long gone. But it did take the best part of the year to shift.
I do still get tired sometimes but I am working full time and have a little girl who likes to get up early at weekends. I don't think that I could attribute any state of tiredness to the chemo. Just to being a father who needs to exercise more and get an early night once and a while.
Hi I was diagnosed nearly a year ago - May 2015. I had Cladrabine in July and my stay in Hospital was about 10 days. I have terrible tiredness at the moment and was starting to dispair that it will never go away. I am working two days a week to pay my bills. Then I have to rest ready to do it all again! My doctor ( Australia) has told me of only three HCL's he knows of, one didnt make it. One is 8 years now and been through chemo three times and a spleenology. And me. Still new on the journey.I have been having bad days lately - mostly because there didnt seem to be an end to my tiredness and no one can tell me IF it will ever go away. Reading this has given me so much hope! Im 52 Female. It feels so good to know there are more of us out there. I was so sick just before my chemo, my brain was so foggy, I wasnt up to researching on the internet. I am glad to find your blog now.Thanks for taking the time to write it
ReplyDeleteHi Wendy, Thanks for taking the time to post a comment on my blog. I understand how you feel in relation to the tiredness. I remember thinking "is this the new normal for me!?", "I'm to young to feel this bad forever!".
DeleteFor me it took about a year for the fatigue to pass and to begin to feel i could work normally. I still get times when it seems to come back but maybe that's just normal life.
I would try not to dwell on the experiences of the others that your doctor knows of, everyone is different. Cladrabine is a very effective drug it just takes time to get over it, and if it does come back then you can always be treated again.
There are some links to some online support groups (other HCLers) on the right hand side of this page. And feel free to message me if ever you want to chat.