I'm back again with a new cancer

Lolie 5 days ago

3 replies
65 subscribers
187 views

I'm not new to the forum - I was around here a lot a few years ago when I had lymphoma and lung cancer.

What I am new to, though, is this incurable thing.

Only months after being discharged from haematology follow up because I've been in remission from lymphoma for over five years, I've now been diagnosed with MDS - and incurable blood cancer, and heart failure, both caused by the chemotherapy I received for lymphoma.

It's a shock, to say the least, especially as I'm now transfusion dependent, only months after my last round of routine checks were perfectly fine. I know that's the nature of many blood cancers, but it's still quite a head spin.

I came to grips with my mortality when I had lymphoma, and although this is a crap sandwich, the chemo which caused it gave me five more years during which I got to welcome two more grandchildren and to see another one move from teenager to adult.

I already had an advance care directive in place prior to being diagnosed and I got an immediate referral to palliative care after being diagnosed, even before I'd accept any treatment.

Nonetheless, being transfusion dependent is extremely disruptive when you're trying to focus on your quality of life. I just spent six weeks in hospital and I very much feel like that's "lost" time.

Weeglesga woman07c553 4 days ago

Hi Lolie

im sorry that you have had another diagnosis, it’s just horrible I suppose we all on here have to put up with hospital visits that we feel are unnecessary. You sound as though you have a lovely family and I hope you get to spend as much time with them as possible, it’s good to vent here especially when you can’t sleep at night . Take care

Angie

tvman 4 days ago

Hi Lolie, so very sorry to hear about your new diagnosis, you've jumped from the frying pan into the fire just when you thought you had your life back.

MDS is crap, I was diagnosed with MDS 10½ years ago, you're right it's an incurable cancer but can be treatable. I have 3 treatments a week, every week non stop. I hope you can be treated without slipping down the ladder.

I wasn't supposed to be here, I said I wouldn't be around for a while as my wife is going into Musgrave Park Hospital in South Belfast in 6 hours. It's a hospital dedicated to orthopaedics and she's going in for a hip replacement so my attention to her recovery has to take precedence.

Take care Lolie

Tvman x

Love life and family.

Lolie 4 days ago in reply to tvman

I have outpatient transfusions 3 days a week (tomorrow will be an all day event as I need both red cells and platelets) and azacitidine 7 days out of 28 (that will cease after 6 months if it doesn't work, otherwise it will continue until either it stops working or I progress to AML).

I hope your wife has an uncomplicated surgery and a speedy recovery.