Recently diagnosed

I've done some googling and there are 2 or 3 medic alert outfits, any recommendations?? I'm heading for the 2000th :-)

Phil, 

yes you are right, I'd forgotten, daughter was told this but I think it was only for a year or so. Mind you, now it is for life for her, she bought a pretty silver bracelet which she got engraved with her NHS number, hospital name and 'requires irradiated blood products' on it. there was just enough room! Don't think it was expensive....

I think any style is ok, just so long as you are happy with wearing it. She simply looked up medical alert bracelets on the net and chose from there. 

And it's not just blood, it's any blood product. Your hospital will be ok with that, your notes will tell them, it's in emergency should you be away from home. 

Hugs xxx

Good luck with the chemo today for those in the chair,

came across this about chemo brain so it may be helpful for those experiencing it, its made by the lymphoma ass.

https://www.youtube.com/watch?v=4kltoemocHE&feature=youtu.be

john 

Jakki, I did say sorry, I thought the page post count was for the number posted not the number for the next one, so the competition is to see if you or phil can get the 2,000th.

the issues for me when I considered radiotherapy was potential of organ damage, potential for secondary cancer in years to come. Given my mass was in the abdomen and I had around half a dozen sites in the small bowel, my concerns were was it safe due to how close things were to the stomach and I knew others who could not have it because of that. What damage could be done to the bowel and what were the number of incidents per 100 and per 1,000 patients. Finally what type of machine would they use as the new ones can target a small area where as 5 years ago most hospitals had the old machines which did cause damage to areas surrounding the part of the body being treated.

I dismissed the secondary cancer as that would be about 15yrs hence but the collateral damage and proximity to the stomach was why I said can we wait as I have concerns and I shared them. 

You will need to go through a similar process but start the conversation before you get to the last treatment, that way you have time to work it through with the consultant, or ask if you can speak to a radiologist as well. That was one of the conditions I had with my consultant, that the radiologist would have to convince me and show how safe he/she could make it. I knew we had a new machine at the Freeman so if I had needed it then thats where I would have gone.

I guess i played a game of odds and given when I was diagnosed I was one of 300 54 year old male who got NHL that year and 1 in 10 suffered some form of damage to the bowel and 1 in 100 some longer term damage. I had had a few problems with chemo and had some damage so thats why I wanted to wait and see. 

It is never straight forward and each of us is different and we make choices for different reasons, so keep up the research and see where it gets you.

Tom, enjoy the tattoo is this a first for you?

john 

Hey

Yep en route to chemo now. Willing myself to have a "good" chemo today rather than the cr@pness of last time. I've gotten everything down now: no lunch food; sweets to pick at (fruit pastilles get, reluctantly, ruined today); water to start with then fizzy drink sipped later on. My flat has been made "nausea delirious Tom" friendly, with tablets all easily accessible and water bottles anywhere I could feasibly lurch whilst I'm in bed. 1 more to go after this!

Phil - hope you're good :)

Jon - I'm having radiotherapy in my neck and chest. Though I'm worried about the organ damage for obvious reasons, I'm hugely likely to take the option. My mantra is anything but more chemo. I wonder if I'll be getting little tattoos along my neck and sternum, they'll be super cool.. The only ones I'll ever get too, I'm not really that kind of guy :)

Hope everyone else is good. Thank you so much for all the support this week... Its going to be a bad couple of weeks but after that I can't wait to return to an even keel.

Tom

Sending good vibes to all in the chemo chairs today, I hope they treat you well! 

Hugs xxx

thankuu :) in situ now

My veins are shot to pieces :( they couldn't get the cannula into my right wrist properly. My poor left has to step up for the 5th time. It was so painful when it went in :( one more time, I keep telling myself... one more time

Oo... that  doesn't sound nice with the veins; so glad I had this portacath put in, true, half the nurses take about four attempts to get a line into it, but, at least its a seriously low risk of providing an infection route, and means I've not got a PICC line (theywanted to me have origionall); so i can bath, etc, not worry about getting it wet.

Best of luck to everyone having, or just had chemo; no chemo for me this week; but, instead, I've had a not so amusing couple of days;

Woke yesterday, feeling really very ill.

checked my tempt; was through the roof.

I piddled about, but eventually Fiance who I'd phoned made me call hospital; a few minutes later I was in an ambulence.

Did all the regular checks, BP, sugars,  pulse, more temps, etc, in ambulence, and then I got taken to A&E; but almost immediately, a bed became free upstairs, in Oncology, so I shot off to the 'home from home', and my Fiance, who'd managed to get a lift into town, somehow amongst th econfusion, ended up in the right place, rather than trying to find me in A&E.

Two nurses, and five attempts later, they got a line into my portacath; they kept asking me if it hurt.... and I had to explain yes, I think its probably kinda painful, but to be honest, I just don't notice anymore,.

Bloods, urine sample, swabs, tests, etc., etc., IV antibiotic (just a bolus, thought It'd be a drip).

Oddly, all the bloods etc, came back negative no sign of an infection, but they decided antibiotics would be a good precaution; so I'm on oral antibiotics, again, this time a 7 day course, clorofloxacin again.

Eventually got discharged; so damn hungry, not having eaten all day.

Got a cab home, with Fiance, and I came over very odd on the journey back; shaking, high temp, sweating, I could feel this 'rushing' in my hands, and arms, feeling very distant from my surroundings; Fiance said he was worried I'd be sick in the cab; I was really carefully trying to judge if I was about to vomit, or not, and try to get as close to the house (wasn't sure I could walk), before having to shout pull over....

Somehow, got all the way to the kirb, in the fron of the house, and then got inside...

I had an idea it was one of two things; I popped a hydrocortisone (fearing it might be an accute addisonian attack), and then scoffed two  snickers bars; shaking and suchlike  stopped relaly very quickly, and felt 'sort of' normal, within half an hour, after a cuppa tea.

Fiance staid over, but yet again my insomnia kicked in, so tired; don't think I'v ehad mor ethan 2 hours sleep a night, the last four nights, or so, now; may hav eto consider sleeping tablets again, before long.

so. that was a very unfun day.

And.

today; woke with a temp.

At least this time we phoned  hospital straight away; same nurse as yesterday; she even called me a 'good boy', for phoning properly, straight away this time.

Temp wasn't as high though, and after she'd spoken to consultant/regristrar, they decided I didn't need to come back in, so long as I carry on monitoring, and do actually call them, if conditions change, or I feel more ill etc.

ahh.

Chemo was all going a bit too smoothly!; I'm now worried I might not have th eplain sailing I've had so far, for my final three infusions..... ; 3B Thursday coming; Nurse said antibiotics shouldn't prevent it happeningm which is good; My newts were nice and high yesterday, at 6, and the WBC was good too; It may be I've picked up some viral thing, and so its just gona have to run it course, with what immune system I've got, whilst the antibiotics hopefully prevent a secondary bacterial infection.

Just so utterly tired now.

Must find energy to wash and clean myself, as yesterday was spent in hospital, I just feel so yucky and dirty, haivng not got to shower or bath yesterday...

Hope everyone else has had a more fun time than this has been; strongly not recomended!

Mark

Oh Mark, that is 'pants' as our lass would say.....maybe you picked up a flu like virus somewhere? That can certainly cause high temps (as I remember only too well from 5 weeks back) so do take care and keep an eye on that temp regularly, phone in if ever you have any doubt! 

Tom, maybe they hit a valve in the vein and that was why it  was painful? can happen surprisingly often. Veins do heal a bit once chemo is over, but there will be one vein they never ever try, so that there's always one for any emergency. 

Hope all of you improve, and get past that final chemo dose, thinking of you all 

hugs xxx

Well that's 4B out of the way, it went well, no pain when the darcarbazine went in so didn't need a heat pad, 4 more sessions to go YAY!!!!!...............Sorry to hear you are unwell Mark keep your chin up you'll get there just be careful where you mix............. Keep going Tom, nearly there now. We had a couple of newbies in for treatment today, I felt quite the old hand at it, funny what it does for you :-). Son has just completed on his first house so leaving him and mum to start getting things sorted. Keep your spirits up folks and keep on truckin. Phil