Recently diagnosed

Ahh! far too many messages!

Busy couple of days. and busy again tomorrow, but have eventually found time to turn computer on, and try wade through E-mails...

Wow, is that two 'remissions' I saw above?!!! err... nath! yea! and.... oops. sorry, chemo brain, can't think now who the other person was, sorry!

Well, went to hospital yesterday.

Did bloods.

7 attempts to get a needle in my arm. bruising still not appeared, guess that is due to low immune system.

NO idea why I did bloods, they didn't give me the results, and the doctor I saw didn't seem to know I'd had any done.

Was expecting to see a dr from chemo, for some kind of advice, and follow up, having just finished chemo. But didn't. - still no idea how long I'm ment to continue with steralising all the time, hand washing excessively etc, having to avoid certain foods etc. Got the Dr I saw to look at my calf, said it wasn't DVT, jus  swollen.
He talked  radiology.
I signed a consent form, which I now wish I'd not, having thought about it some more, I think I might just pull out, and take my chances with the cancer, rather than risk the perminant disability and life-long disease I could get as a consequence of the radiotherapy they want me to have;

Talking about directing  the bean sort of 'up', through my left armpit (where the main lymphoma lump was), to go on; hit the area under  my left collar bone (four or five tiny clinically not lymphomas enlarged nodes were discovered on initial PET),  (missing my heart completely, but grazing top of left lung en-route), then to colide with my  throat.

Main two points for me, of  concern, were that the radiation may hit my spine, and I could lose my left arm. and it may hit the thyroid and give me yet another endochrine disease, that will take six months to even get an endochrine clinic appointment for. I wasn't happy at this, at the time, but he went on for ages an ages, using increaseingly aweful language, of vagueness, and unable to give any actual numbers, which I loath and hate. (well I'm from a science background).

I asked him about the missing letter we discovered, and its suggestion I had brain lyphoma, that no one has acted on, and he didn't answer my question; rather he said 'probably' a couple of times, and went all hyper-vague again. Rather than  ripping his throat out and killing him in front of his two student doctors, I just signed the consent forms, so we could leave.

and now... I'm not so sure I shoudln't have gone with the violently murdereing him option, instead.

Got a phonecall this morning; have to be at hospital 9.15 tomorrow, for a scan, for the radiation. perhaps I've left it too late to pull out of the radiotherapy, dunno. - they never tell me anything anyhow, maybe I shoudl do just the same in return.

So going for  the CT scan tomorrow, if my brains working, which is unlikely that early, as I'll still be close to having taken the hydrocortisone, which messes with my brain big time,  I'll try find a doctor, or nurse, or perhaps just a cleaner, who might know my blood results that the doctor didn't seem to know, yesterday. and perhaps see if I can find someone, no idea who, to talk to again, about the Radiotherapy, and why exactly they've decided to take such a dangerous route through  my body; I'm blind as a starting point, I can't see anything but my needing 24 hour care if I lose an arm too, combined with multiple endochrine problems, not gona go there.

Sad end to treatment if I have to bail out, because the hospital can't communicate.  - my initial thought, of not even going to GP with the lump was correct, in that case, as the treatments all seem a waste of time, if I have to stop them before they're complete.  If Only I had some point of contact at teh hospital.

Will book to see GP again, every week, once a week, going up to twice a week, and increasing, until I do so every day; in order to make someone do something, and annoy him enough, that he can find right person at hospital, to actually get an answer as to whether anyone did a scan or looked at a scan I had, to confirm, or otherwise, with the brain lymphoma.  failing which  I'll use violence, if I've enough energy.

Sorry.

my brain started working a bit better, later on. Spoke to Karin, as well as having  talked with W about it earlier... (William's staying here, again overnight, as I've the scan at the hospital in the morning).
Hmm. my stupid brain is a real problem at the moment.... sometimes it just isn't working well at all.
Still wanna talk with  the docs in the morning, about the radiotherapy plan, (as well as find someone who can reveal the bloods I had done yesterday, and  make another attmept to sort out the  mystory missing discharge letter, and find out with a degree of actual certanity if anyone has looked specifically at any of my scans to rule out/in brain lymphoma).
Moving more towards idea of going ahead with the three weeks radiotherapy. - I guess it'll be all kinds of terrible again. but. hopefully minus the spinal damage/arm paralisis and without the thyroid gland destruction).

must get some sleep up at 7 to get to bus in time for hopsital at 9.15. - don't like the sound of the possible weather here tomorrow!; could be blazing sunshine, followed by localised flooding/hunderstorms, or, we may just start the day with  the thunderstorms, just hope the buses are running, or it'll be a very long wet walk to the hospital- if ineed I can walk that far; Had to leave W to do last bit of shopping in town today; I got as far as Lush, and half way back, and was so faint feeling, I had to come straight home.

sorry for being so crap again. damnit, its so not me, all that  negativity crap. guess its just my untreated endochrine stuff, plus teh chemo still inside, and... stuff...

Hi All,

She started having puppies about 0600, wife sat up with her all night as usual. So far dog and a bitch will have some pics later today, probably when she's finished, I have said on here what breed they are but will let you guess :-) Nice day, forecast crap for the weekend here.

Phil

Hi all....lovely day again here...hope same for you

I have my pet scan this morning so fingers crossed for good response to treatment....

Cezza....Drs never actually mentioned eBEACOPP but said if no/inadequate response they would look to change treatment so assume this is what they mean....are you hoping to get results today? Have everything crossed for you....

Ok...s'pose I need to pull myself together for my trip to the scanner....I ised to like donuts before this all started....now not so much!!

Have a good day people.....

Dxx

Mark, you need to speak to a radiotherapy consultant, I think they have oncology ones too, I have never seen losing an arm as a risk or side effect, your other concerns are fair, you need to know what type of machine is being used and how far outside the target area gets hit.

Re your other problems then you do need to speak to the PALS team and get this sorted once and for all.

Chemo brain can be crap especially at consultations so always best to have someone with you did W go with you?

Phil you did share the breed so will leave it for you to have some fun.

Off to the sun today for 7 days so hope the weather stays fine for you all too, good luck with the scans and results everyone and rather than wait ask if the specialist nurse can ring you with the results Daisy.

john

John, have a lovely holiday! 

Phil, looking forward to hearing all about the pups, and if possible, seeing a photo, hope all is well with Mum and pups.

Daisy, hope the scan is ok, and that they are able to let you know speedily..

Mark, please do take someone with you and speak to PALS, this is all going on far too long and nothing is getting sorted, it really should. And please as John says, make an urgent appointment to speak to the Rad Consultant! 

Jakki, enjoy your book today, hope that chemo goes well tomorrow and you feel great for Sunday, the weather is set to be a good bit cooler for Gav's event, hope it goes well. 

Tom, keep trucking on....

Hugs to you all xxx

Hi everyone

John - lovely holiday sir!!

Daisy - know what you mean about doughnuts. I've 'lost' a lot of foods now to treatment-association :( but I guess after I can start to eat again (late next week? I hope?) it might've all reset a bit... maybe... can't bank on it though!

Jakki glad you had a nice few days, you must be close to the end now as well?? mymymy

So many individual call outs! :)

Tom is continuing to truck but his throat continues to be a bed of knives; before the cocodamol was filtering out ~90% of the pain, but this is slowly ratcheting downward now... I can feel it a bit more on a daily basis which, I guess, can't be helped! It's just the mornings I'm glad no-one can really see - wake up in a lot of pain, and need to force down the coco, followed by caphosol, followed by mucilage, before I can have any nutrients (which are also in liquid form)... goes without saying I'm a bit sad not be able to eat much food at the moment. BUT I did manage to eat sashimi yesterday as it's just pure fish, so I think I'll give that another try today (also because it was yummy and I love sashimi!)

13/15 after today is over, plus I've secured next Wed 'til Fri off before my formal reintroduction into society as a Human Being (Not A Cancer Boy) on Mon 22nd :D

Best wishes to all.

Tom

Hi folks

Keeping up, just about, with goings on! Sorry to be a bit late chiming in...

So firstly many congratulations to the two new members of Club "R"! Way to go both!

Daisy: Remember that all of the drugs you're given are optional! Dexamethasone isn't given to help cure you, it's to help with the side effects of the drugs which are. However, if (as it did with me) it causes more and worse side-effects than it helps with you're entirely within your rights to refuse it. I did and never regretted it. YMMV...

Tom: the razors-in-throat sensation does go off, and relatively quickly too. I'd not discovered sashimi when I was getting rads previously so lukewarm tomato soup and Ben & Jerry's was my therapy of choice. Hope the sashimi habit doesn't get too expensive!

Anyway, better get my nose back on the grindstone...

Keep smiling, everybody!

Ian

Hi Ian, good to hear from you :)

How long do you reckon it'll take?? It's totes horren! 

I just ate a lot of sashimi and feel good now, though... tomato soup and froyo later on (plus 'fortified' cream cheese soft rolls)

John; it may have been a consultant radiologist I saw on err, whatever day it was now, or just a radiology Dr, no idea, they never give their status anymore; seem to have just about done away with titles like registra and suchlike; the reason it may lose my arm, is that the beam is likely to be very near, or hit the spinal cord, as i understood it, from the very odd angle they want to do, to hit the entire 'route' of the lymphatics on my left side, from arm pit, through underneath collar bone, up to bottom of te neck; as far as i understood it. - I did have William with me, during the appointment, I never go  to any appointment alone.

moomy
 May have to try find these people, pals? I guess they'll be in the hospital somewhere. but I'm so exaused, just having to make appointments, chase up appointments etc, not sure I've energy.

Well, went in today, for scan, and the cast to be made.

The cast was cool, having that made. all over my head, onto both shoulders, and down, onto my chest, to about nipple height.

Then they scanned me. Scanner wasn't big enough, or something, and they didn't have the bigger scanner working today, so have to go back Wednesday, for scan again. at least the cast is made, now, so won't have to spend time doing that ats well.

Got plan for radiation today. oh. actually I didn't. I'm only the patient. they won't let me have it; they gave it to William in print form, I don't get a copy. communication is something they don't do.

illiam is going to type it all in tonight, and E-mail to me, so I can have a copy.

three weeks, 15 sessions of radiation, but with clinic/check up consultantions thrown in, so will take about 3 and a half weeks in total.

Notdue to start for three weeks, from Monday; so at least i get a break after the chemo; will be five weeks since last infusion, by time radiation starts. hoping I might seen some signs of recovery from some bits of th echemo affects, by then. well, hopefuly before; I want to take william away for a weekend.

Spoke to receptionist after scan, asked for results of my bloods from err, Wednesday wasn't it? yes. from Wednesdays clinic/meeting with radiologist.

She sort of had them, but suggested i spoke to a chemo nurse, from the day unit, so we wated for a nurse to come out. bloods look kinda OK, sodium is normal, and neuts over 4 again, and total white count is reasonable.

Asked her a couple questions about post-chemo stuff; and got confusing answers.

No, i don't need to do the over the top steralising everything, and hand-washing, and no, as Im not neutropenic, I can eat what I want (just had soft cheese). but, yes, still need to monitor temp, and still at risk of infections, and no , can't take paracetamol, etc. Which seem to kinda contradict each other.

Happened to mention to her, I wondered why they'd not put any follow up consultations/clinic appointments in, for me, for chemo, following its end;

they should have, and haven't.

Apparently that is being chased, up, with someone, who's title I can't quite recall, who I'm not familiar with; possibly someone I should have been in contact with for last four months; some kinda specialist nurse. No idea.

If only they could communicate, and opened it up. Clearly, treatments follow a protocol, for each hospital, or clinic, etc; no idea why they like to keep this information secret. if I knew what it was, I'd know where I was in it, and what was ment to be happening next; so I could pick up easier, rather than by chance, when something has gone astray, yet, again, like this follow up chemo appointment.

Thinking now I might as well go ahead with rads, I'm just so past caring.

may try and recontact radiologist, in the next week or so, perhaps speak to this nurse about it, assuning she does actually call me back, once the nurse I saw today has pased on the information that I've not recieved the follow up chemo appointment.

Endochrinology are a waste of time, they work on geographical timescales, judging by when my next appointment is, in the autumn; may try find a private clinic, post radiation, if I survive it.- Endochrinology don't seem to yet know I've got the SIADH, mentioned on the missing discharge letter, from neurology, in january, and as they've now ruled out hypothyroidism, and the penitious anemia, and decided the addison's, is secondary/pituitary related, they prob oughta be looking at the secondary addison's and the other pituitary related one, the SIADH, together; though that almost comes under neurology, given its the pituitary gland/supraoptic nuclei. - guess I'll just have to consider all that as a seperate thing entirely to the oncology, as they never wanted to talk to each other, from the get go; oncology activly hate endochrinolgogy, from what I can gather, from what Doctors say. great.- even though every side0-affect from chemo i've got could just as easily be related to endochrine problems.

Got some more haemotology help soon, though, Karin is putting me in contact with one of her work collegues/friends, who's a haemotologist in Sweden. which might be helpful.

Walked back from hospital, as it seemed a nice day... but... so hot, was really fading fast by the time we neared home, just so tired now.

hope everyone else is doing OK in the humidity and heat.