Hi everyone,
I've been reading through the first few topics on the 'HL' board and wasn't sure if I should post or not but sitting here realising that not everyones experience is the same and people deal with it differently, I thought I'd post how my experience so far is going following a diagnosis of stage 2b HL a week ago.
A little background if you're interested. I'm a 35 year old male, married with 3 lovely kids. I'm a manager at a busy building company (not many of those about these days!) and I have a very relaxed outlook on life generally. As with many males I'm stubborn as a rock. I don't like to pester people unless absolutely necessary. Something I now regret a little but hindsight is a wonderful thing.
I feel I need to share my experience. I'm not sure why, as I'm sure this story will reflect many others you've either already heard or have been through yourselves. If you're interested here it is.
Earlier this year (around the end of February) I noticed I'd lost some weight. At the beginning of the year I'd weighed in at around 14st 7lb. I'd lost around 8-9lb and my trousers were a falling off me! I didn't think much of it, although I did wonder how I'd done it. I teased my wife that my 'sit-on-the-sofa-watching-TV' diet was working wonders. I figured I'd probably lost it because we'd stopped snacking in the evening like we used to. It seemed to make sense in my head so I did nothing about it. My wife said I wasn't normal. I just smiled!
The weight kept coming off slowly over the next few months and I was pretty pleased with it although I still wasn't sure how I was doing it. By the time June came round I had lost about a stone and a half. At this point some of my friends were noticing and asking how I was doing it. They all knew I wasn't exactly excercising or dieting. They were as stumped as I was and a couple of them said I should consider going to see my GP.
The only thing was I felt great in myself at that point. The only thing I'd noticed was weight loss and I was enjoying it as I'd been putting weight on for a few years.
By the end of July I'd started getting bad night sweats, my appetite disappeared and I found myself getting tired and out of breath quickly. I still didn't link my weight loss to any of this but I did realise something was wrong.
I did what everyone with an internet connection would do and Googled the symptoms. It scared the hell out of me when I saw cancer as one of the most returned results but I knew I had to go see my GP asap to see what was happening.
The first I could see my GP was the 2nd August. When I went he asked me a few questions and then sent me off for a chest x-ray. Later the same day the CT dept of the hospital called and asked me to go back in for a CT scan the next day. At this point I was getting pretty worried. No-one told me anything till nearly a week later when my GP confirmed they'd found a 'large well defined mass' on the x-ray which was why I'd been in for a CT scan. My GP didn't know what it was but referred me to haemotology, who in turn told me they needed to do various tests.
One (painful) bone marrow biopsy, 1 failed medianoscopy biopsy by the cardiothoracic unit (got a lovely war wound on my neck now), 3 CT scans, 1 PET scan and finally 1 successful needle biopsy later I found myself sitting with my consultant a week ago with him showing me the PET scan and explaining that I had stage 2b HL.
I've never seen a PET scan before. Very interesting. Very eye opening. Scared the daylights out of me when I saw the extent of the problem.
So a week later, I've already had my first course of ABVD and the next is booked in for the 7th October. 2 week cycles for at least 3 months. I'm only having chemo. There are multiple masses so close to me heart I don't think they'd dare risk radiotherapy.
You could say this has come as somewhat of a shock to me. I didn't think I'd get cancer in a million years. It's even more of a shock because I didn't feel even slightly unwell at all until later in July. Things moved so quickly, it was really only the failed medianoscopy biopsy that held things up. The NHS really reacted to this quickly and I'm so grateful for it.
So far I can feel the onset of having a sore mouth. My gums don't feel right and my tongue is quite sore at times. Other than that there's nothing happening in terms of side effects but I'm prepared for them if they do come. I'm still losing weight. When I jumped on the scales this morning I weighed in at 12st 2lb so I've dropped a total of 2st 5lb so far. If there's any silver lining to this at least I've lost some weight that I needed to anyway! I plan to try and keep it off once I'm cured!
Anyway, that's my story so far. Apologies for 'War and Peace'!
