Recently diagnosed

A bat'leth? Awesome...

HEY Mark :) sounds like an absolute crap show. Glad you saw the positive side in everything though! It does get worse as the chemoes progress, its true. But just remember that every one is another of those ****ERS down that you never need do again!

HEY Ian :) long time no see! How's things? Are you still chemo-ing too? 

HEY Jakki (let's continue a theme) you can try to, I don't know what my fitness would be like... As I said, I work out for hugely superficial reasons and haven't ever really "enjoyed" it, only the results. Let's see. 

+ ugh you're very kind. I'm def not looking my best right now.. Wish they were knocking on my door! Haha. I guess i have a killer speed dating answer to the inevitable "what's the most difficult thing you've done" question I suppose.. 

Hoping you all have restful nights (hope you catch up on some sleep, Mark). Got a cab at 8 30 for my radiotherapy planning sesh... Maybe I'll get my mould!

Tom

Tom, thanks!; yeh, each is another one down; and this Thursday's, will only leave one more for me to do!!!! - to be honest, I think I've had a really light time of it, asides the infection thing, I seem to keep getting; really no idea what's causing it.... I can't think I can do much more in terms of hygine, steralising, etc, - my hands rarely go half an hour without being washed, and/or drenched in alcohol-gel... etc. but, I've escaped nausea, and, I guess could be a lot worse than I am... heck I've even put weight on... and, I swear; my hairs now turned a corner and appears to be thickening up, and growing, and, I never even lost it all, it just sort of thinned a bit, and got finer... - by the looks of it, the scaring alopechia, on one bit of my scalp, from my accident in 93, is now actulaly growing longer than it ever has>?: Chemo fixed my bald patch? very odd! - unless that's just steroid... dunno.

I really do try just take this 'crap' in my stride, with the unexpected, and well, basically unwanted hospital visits, visa the infections; just more times to flirt with nurses, make other patients laugh, and generally just try fill and occupy the time which always seems to drag in  hospitals; I listened to so many albums, through Sunday night, and into Monday morning!

Odd thing is, now, today, I've not had this much energy for weeks. and, my body has't ached, my joints haven't hurt, hardly, and if anything, my chemo brain seems deminished; I am thinking a lot of that is actually down to doubling my hydrocortisone dose, for the Addison's disease... - I've still got a snaky suspecion that at some point, soon, as chemo finishes, and my radiation comes and then goes, I'm gona find so much of the stuff, right now, ain't anything to do with lymphoma, but instead all this random endochrine stuff, ike the addison's which croped up at the same time as the lymphoma.... hey ho.... more fun and games to come, working all that out, with the guys in the hospitals endochrinology department....

Goodluck, tomorrow, Tom, with the radiology meeting... I guess I'll be doing that, myself, by the start of next month, after the final chemo end this month...

Hope everyone is having an OK evening, or, I guess, looking at the time, is already sensibly in bed!

Mark

Hi all!

What is this weird place they call an internet forum? It feels like I haven't been here in forever. Not that I don't check it every day. I'm not ignoring you, I just post from my phone a lot so find it irritating to reply on such a little screen.

I am enjoying life post-treatment. I can't say the 'che..' word because I hate it - when people say it to me I shudder haha.

Lymph nodes.... hmmm, yes I can still feel a small one in my neck, but only when I raise my elbow to the side. I don't think it's getting bigger... who knows. I get the results on the 10th June but still don't have a date for the scan, which will be the week before. Waiting on Alliance Medical to call me back.

In the interim, can't remember if I mentioned, but I managed to get my hands on the results from my first PET scan, the one that confirmed the diagnosis. Generally, the SUVs ranged from 11.3 to 9. At my interim PET after 2 cycles, they were 3.9-4.1 - and that was most likely fat. So I was very pleased with that. It's hard to feel good about the 2nd cycle pet when you don't know what you're comparing it with. ANYWAY. I have a bottle of champagne sitting on the shelf, ready to pop in the fridge for the 10th June! After that the parents are very kindly whisking me away to a 5 star hotel/resort/spa in Tenerife where I plan on not doing very much - apart from being careful in the sun obviously.

I've been off work yesterday and today. Getting out of bed is a real session at the minute. Tiredness has definitely got worse after ending treatment. I feel a bit pathetic not going to work because 'I'm tired' but that's really how it is! Plus the past couple of days I've had a bit of a sick feeling which I presume is because I've stopped taking the lansoprazole and so my stomach is readjusting to increased amounts of acid.

In other news.... I've had a few issues with my left leg since before Christmas - an odd nervy feeling, like when you knock your funny bone but less intense. I'm not sure if it's just the treatment or something else... but I discovered a few small bumps on the back of my left hamstring, and a larger one at the top. I can't tell if they've always been there (as I've never poked and prodded my leg so much before!), and they're only palpable on contraction of the muscle.
I got sick of mentioning it at the hospital and nothing being done, so I went to my GP and she has scheduled an ultrasound but still waiting on that... hey ho. Probably nothing. They're not lymph nodes, but still - any lumps and bumps can be a bit stressful after what we've all been through.

Glad to see there are some trekkies among us! I have models of Enterprise 1701, 1701-D and Voyager on my desk!

Tom - running shoes. Depends on how you run! Nip into any decent running shop and they will talk you through it and look at the way you walk. Personally I run in Adidas Boost trainers. They're alright and got me through the Great North Run no problem. I put them back on last week and managed 2.5 miles in 30 mins. Admittedly on the treadmill and I started off walking - having not run in over 6 months I didn't want to give myself a heart attack - plus if anything does happen it's better to be in a busy gym than out alone in the woods or something.

I have my first run on Sunday, just under 5k for Bright Red:

http://www.brightred.org.uk/

I'm probably going to join up as a regular donor now, seeing as though I can't donate blood anymore! (I was gutted about that)

I was supposed to do the Manchester run last weekend but had to drop out. 10k is a little much for me right now and also I had no one with me and nowhere to stay (They were the main reasons, I probably would have done it if I lived closer........!)

End of treatment is nice, if a little... frustrating... that you can't dive back into everything. Tom, you're leading the way on the radiotherapy! Hope it goes well. I wouldn't be surprised if my consultant dropped that bomb on me in a few weeks ;)

Hope everyone else is well, not long to go now!

Nath

Hello all,

Mark, so good to see you back! We all got a bit worried. Really gutted your temp has been leading you astray, hope things settle now and you stay out of hospital properly! 

Nath, great to see you post too, been wondering how things are with you. Don't forget that your body has been somewhat poisoned, so feeling shattered is normal, don't feel guilty about having a hard time getting out of bed (and us oldies have that every day, anyway, lol!) I bet your results will be ok, and worrying about some lumps in a muscle, again, because of all you've been through, is normal! (Yup, daughter panics too, her 'popping' sensation with some pain in her neck was possibly some sort of mild muscle rupture.) 

Phil, weather is looking great for cricket (and watching grass grow, haha!) hope your yuk mouth is better today....

Jakki, hope things are ok for you, and you have some good weather up there too, tomorrow is forecast to be wet, make the most of today! 

Tom, that planning meeting takes quite a while, you'll begin to worry that radiotherapy will always take that long - it won't! Hope things are ok now and your tum settles. I enjoyed the first Star Trek series the most, it's so funny! But liked the films too, made while the stars weren't too old but better techniques and story lines than the series, I loved the one with the whales best of all! 

Claire, is everything ok with you?

hugs to you all xxx

WOW I am NOT SEXY these days! No muscle and I've gotten fat from chemotimes... Mark, I know what you're talking about :D (good to hear from you!!)

Went to get the radiotherapy sorted today. I start on the 27th. All seems a doddle; only issue encountered was that the radiotherapy doctor couldn't cannulate my right arm in the right place (not her fault.. but I did tell her) so I feel a bit like a pin cushion now! As you can see, the mask has been fitted

John - no tats!

I was feeling v. sick the whole time I was in hospital, i think just from how **** the last experience was of being in there.

NATH good to hear from you. Yeah, I think I'll see if I can get some sort of measure up done in order to get rid of the splints. As said on previous posts, I am incredibly superficial in terms of why I work out - but it's amazing you get so many things done :)

Not surprised you're knackered. I was actually invigorated by the end of chemo happening (but it's only day 5) so maybe it'll change. I still have radiotherapy to go so I won't be quite finished yet. I'm sure your leg will be fine, but yeah any humps and bumps I'm not surprised send you into overdrive.

I was wondering about the lansoprozole - I'm stopping that v. soon too, I bet my stomach will go apesh*t!

I'm going to try alcohol on the 24th too.... just one or two glasses of vino!

Hope all are well today :)

Tom

LIVE LONG AND PROSPER! 

Hugs xxx

Tom I would complain, not getting the full service there, no tat,  looks like they are making cut backs, make sure they switch the machine on when you go for treatment not just the laser light.

you should get to keep the mask post treatment, a nice piece of wall art there! 

it will take longer for them to set you up than it will to blast the area.

Did they explain where they would hit and how they will set the machine up without the tat or are you getting a general blast to the whole area?

Hah... yeah, they even covered their own backs by saying I'd "feel nothing"! Maybe it's all just a placebo...

Jokes aside, I had a CT scan as well and they'll drill some holes into the mould to aim the beams. I think you're right, it'll take about 10 mins to get set up then just the 5 to get the zapping done. 

I was looking forward to some Trill spots :(