Recently diagnosed

Tom, glad to hear your itching has gone, and I guess your sleep back to normal?
Yes; its sometimes a mystory to me, what our doctors and nurses do an say. - my hematologist told me there was no reduction in effectiveness of my chemo, by dropping the vinblastine, when I was undergoing chemo. - To justify and force me to undergo radiation she then told me, because I didn't have the Vinblastine, the treatment was less effective, hence I had to have the radiotherapy. - entire contradiction. Endochrine nurse the other day, was harping on about how important it is I'm on teh right dose of hydrocortisone; I asked her four times how I know if I'm low, or high on the drug; each time she didn't answer me; so I am none the wiser, and still unable to alter my dose as she told me too.
 

Busy little time here, 8th fractionation yesterday, 9th today; today have the 'review' beforehand with the Dr/radiologist; so hoping to find out if I'm hormonally male or female! - these flushes are just the worse thing ever; worse side affect I've had of treatment, well, cept for the  perlipheral neuropathy. - all the worse side affects I've had are all the ones they never mentioned.... seems odd to me...


Cezza - were It me, I'd risk it!
- this whole trying to avoid infection thing, is a nightmare. - avoid crowded places... yeh.... - we need to visit supermarkets and shop. Avoid public transport; how did they think I got to hospital for my chemo?. and, if we get an infection its likely to be  from such a mundaine source; touching a door handle; touched by two dozen people, those two dozen people have each touched two dozen other handles, buttons, whatever, that morning; from one of which, they've picked up something left by another hand! - I seem to recall, for 'healthy' individuals, the most common way to catch the 'common cold' was rubbing our eyes, after having touched a handle, etc, that a person with the cold had previous touched! - yeh, we can try use our alcohol whipes, and hand gel, but.... there is only so much we can do;
 

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Any idea where your neuts are at the moment?


End of this week I've only teh one week of radiotherapy left. - lots and lots of unanswered questions I have left remaining, still from chemo, etc, as well as other things. No idea how I'll get any of them answered, I guess a week thisFriday, on my final fractionation, the radiology  division in oncology will kick me out as hard and quick as hematology did and never want to see me again. Done with the lot of them; I'll go back for a final PET and then just give up tryign to make any sense out of any of their behavior  towards me, and not go back again. - Still no idea whether I'm ment to be doing anythign differnt in my life, now, post-chemo, or indeed if any such changes oughta be done post-radiation or post-entire-treatment. They've not told me anything so I assume not. - Not been told any signs or symptoms to look out for for, as goes any potential return of the lymphoma or anything, so dunno if we're ment to be vigilent or not... - just leaves me with the nutcases at endochrinology to deal with- their contradictions are even funnier;
"here's an injectible kit of hydrocortisone you have to carry with you everywhere, and inject yourself immediately on getting symtoms I won't tell you  of low levels of hydrocortisone"
and. symultiniously.
"of course, you can't use it as your blind. so happy coma and death".


I'll try get some sense out of the doctor today in review; thefinal review next week looks like it'll be a waste of time; its stuck in about five  minutes before my final fractionation, and they're always running half an hour late anyhow for the review/consultations. - I have to get William to translate the doctor I  just can't pick up his accent at all...

Hope everyone else is doing OK,

Mark, if you don't want to use the PAL's service then I would suggest that with William you type out all the questions you want answers to, then take that with you when you go to you meeting with the consultant to get your pet scan results. You should then go on monthly or 3 monthly check ups for the first year. Life post chemo is more about adjusting to the new you, and that will be unique to each of us, the best advice is chill and don't get to frustrated when you struggle with something including chemo brain, laughing it off makes it less stressful.

Jakki, you ok? you have gone quiet, which means you are tired or enjoying your break, hopefully the latter.

Phil, has the nurse said when they will let you free and any date for the scan ?

Hope everyone else is coping with treatment and tests,

suns shining so going to try to cut the grass and no doubt will get wrong from she who must be obeyed.

john 

Hello all (thought I sent a msg earlier on my phone but it didn't go through)

Itching has gone down and I slept well - so, so glad that it is definitely the antibiotics that made me itch. I did an e45 bath too yesterday and that really helped (thanks for the tip from ages ago, John :))

Lymph still raised; Jul 24th 9:30 for ultrasound.

Then, hopefully, that's it til the PET

I think that life after cancer really is like a breakup. You think about it a lot to begin with, and then, as  time progresses, you do think about it less and less. Occasionally, you feel the urge to get into contact again (i.e. my recent scares) BUT, I hope, before long life moves on (see recent acquisition of nice person crazy enough to like me) and you'll eventually be at peace with it all being over.

Tom

Hi John,

Don't have a date for the scan yet except that it will be around the end of the month but I do have an appointment with the haematologist for 10 August to get the results, seems strange but it doesn't take long to fix up a scan appointment.  I'm off to see the nurse soon to get the finger checked out and hoping they will leave it open now.

Tom, glad the itching is under control.

Phil

john - We actually got a bit somewhere today!;

First, we got the blood test results back; I have indeed transformed hormonally into a female. And am undergoing the menapause; this probably explains part of my memory problems, my hot flushes, my eating changes, possibly my sense of taste fluctuations that still occur, etc; bad news, they're not doing anything; getting refered back to Endocrinology; which may take months to get an appointment.

Dr agreed to arrange for CT scan, a few weeks after RT finishes; to follow up on brain scan from end of january that showed evidence of brain lymphoma/cancer.

In both cases; Dr basically ignores me, and only did this through William. I might as well have not been there.

Told Dr about my throat starting to hurt, and swallowing starting to get painful; he said 'eat cold cfood', basically.

John; I've no idea  yet with follow-up stuf, I think there should be a PET scheduled in for about 6 weeks after my last RT, from what the hematology Dr said, months back; don't get to see hematology anymore as far as I know.

Hoping it may be consultant for PET rsults, or at some point; someonw who will pay attention to chemo and RT sideaffects, and more the 'everything' rather than just dealing with one tiny aspect.

After the weekly review with the Dr, had about an hour wait until my RT; but got in straight away, which   was good. got home early, and slep for over an hour!; I think I'm getting tired out by all these hospital visits.

I slept again in the mask/RT machine. - woke up on hearing the clips or whatever they are that fasten the mask, being undone!

well, Radiation 9 of 15 done...  two thirds of the way through after tomorrows! Feeling a bit bouncy after the long nap (so unusueal for me); going to make a meal for W and I now I think, then maybe wonder off out for a walk and visit the pub, as we seem to do each night. (currently 2 to 3 pints of real ale, is, as far as I'm concerned part of  my medication! - Carry my melatonin with me in my handbag, and so tae it with beer in the pub, when it looks like we're about two hours away from wanting to go to bed...)

hope everyone else is doing OK, with tests, chemo, RT, and of course the recovering from thereof! - sorry I've been so all over the place, emotionally... - I can at last at least in part, blame the fact I'm undergoing the female menapause.... despite being male!
 

Good morning all,

Had a lovely time at my sister's but it was lovely to be back home yesterday, that is until I left the taps running for ages and completely flooded the kitchen. OMG what a job, it took me three hours to empty cupboards, move white goods and dry everything! On the plus side, I now have a very clean kitchen.

Sounds like everyone is doing well, Iam fine thanks John, I do sometimes get these funny little panic attacks though, you know the ones where you feel like you've forgotten something important? Think it is a result of having become slightly institutionalised ( not quite right but closest I can describe) by the treatment. 

John, does the shoulder seem to be healing well? 

Mark, you are cracking through those rads, one more week mate and it's not so bad being a girl lol :-), seriously though, hope they sort things out soon. I am going to Lush after my results appointment on 29th July to buy some creams for my hols. Will def buy Dreamcream and Skin Drink, any other recommendations? Can't do Bath Bombs as the Villa has two showers!

Tom, glad to see the itching is going down, how's the love life?

Cezza, think you asked what type of scan I am having? It's a PET scan, when I had my mid point scan consultant did say I might not need one at the end but cos there was slight shadowing he is doing another. I wouldn't have had a mid point had I not asked for one, think different authorities do different things, I know Phil didn't have a mid way scan.

Who's up for lunch in London first Sunday in October or another date which suits? Only Tom answered as yet. 

Love Jakki xx

Hello everyone

It's okay, Jakki! Think she's staying over tonight.

I am feeling tired today :( hope it's just a layover from those few days when I couldn't sleep. It's pretty bad. Lymph still up... ultrasound in a week.#scanxious

BUT itching has receded (I am using Piriteze (OTC) rather than the prescription drugs now) 

I'm such a hypochondriac now I think... trying to forget about it and just look forward to going out tonight. I'm going to go back home to Essex for my mum's summer party tomorrow (lots of people telling me I've "done so well" I'm sure... never sure how to react!) then I'm taking Sarah (for it is she who I am dating... funnily enough, the first 'English rose' I've ever dated, always been mixed race beforehand!) for a nice day out on Sunday :)

Hope all are well

Tom

Jakki; sounds good to me; will get my clerk (William!) to drop that date putitively into our diary!
And, speaking of being female.... - I may wear my new pink blouse today to be irradiated in!

Tom; best of luck...... - tiredness?; we all get tired time to time!; something my radiology Dr reminded me of the other day; yesterday in fact; just because we're undergoing or  have undergone treatemnt, like we have; doesn't mean every ache and ailment is associated with that treatment! - hence my aching shoulder is as likely just how I slep to be honest... Mind, convinced my throat is getting worse, but copable for now...

Off out to do some shopping soon, in  town; including a trip to Lush; a few bath bombs, think I'm  alright for dreamcream, may get some more shower smoothy; its nice, but, not quite as good as the bath bombs etc, IMO...


hope everyone else is doing OK; I'll be two thirds the way through my radiotherapy, some time after 4 this afternoon, assuming it all goes to schedule...

Cezza,

Hope Race for Life goes well, I am doing it Sunday as well, my sister and sister-in-law are doing it three legged, mum and Auntie walking it, I'll do it with them as I think after a hen do tonight and wedding Sat (not same person lol) think I would be pushed to run it!

Mark,

Shower smoothy would you recommend for my hols?

Tom,

Sounds like a fun weekend, hope you get some energy by then, have you got time for a power nap after work?

love to all

Jakki xxx

Phil,

How are those pups doing, bet they are big enough to get into mischief now!