Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

[Skap]

Squiffy01 welcome to the thread, I am sure you will find help and support here. I don't know whether we have any regulars with bowel cancer but certainly lots of us are going through or have had chemotherapy and could maybe answer some questions. I had heard that bowel cancer is often hidden, will you have surgery at any point? Do you know the details of your chemotherapy? I hope you have some friends and family around who can help you through it. You should expect a chemo pre-assessment appointment with a specialist nurse. They go through in great detail the process and side effects. Take a notebook with all your questions.

[Skap]

ellenanora5 sorry to hear you had such a hard time with radiotherapy. Am I right in remembering that you didn't have chemo? It's just that I have had blurry eyes which I put down to chemo side effect. Perhaps it's a breast cancer side effect, who knows. I was given some drops for dry eyes, I didn't think they were dry but the drops seem to have helped a bit. I really want some stronger glasses but I was told that opticians don't like to prescribe while you are still on chemo.

Bloodybridget Fingers crossed for your scan results tomorrow. Has your mouth improved? Hopefully the oncologist will know what it is.

My side effect of the week.
Red hands. I started with a rash on my forearms weeks ago but last weekend the backs of my hands went red along the knuckles. It's a bit like sunburn, sore and hot. I also have red around my eyes like goggles - the chemo nurse last week thought I had been crying. I look delightful I rang the advice line and it's a known side effect. I was told to take antihistamine (which has done zilch) and they will ask oncologist before I go in tomorrow. On the plus side the dire rear has not materialised this week.

[ellenanora5]

meercat thanks, yes it's blurry vision and can't seem to focus on reading, I was told the same that no point in eye test just yet and to wait until the new year.
I have the joint pain too, and it worse since I started the anastrazole, I need a hip replacement which has been put on hold for now and some days the pain is brutal and seems to affect my ankles and feet worse, are you taking calcium tablets.

Skap how are you doing, yep I didn't have chemo just radio, good tip about the eye drops, I've to refill my prescription today so I might ask about them, you never know it might be my age and nothing to do with radio, fingers crossed.

Squiffy sorry you find yourself here, I've no experience of bowel cancer but this thread and everyone here is a fantastic support, I haven't posted in ages and look at the lovely responses I've had, what info have you got so far and do you have help with your little boy, though mind you the smallies can be a great distraction.

CointreauVersial the burns started to develop after about 12 sessions, so that time I was just told to keep moisturising the whole area so under my arm and all around the breast, once the skin broke I was given a load of dressings and some special dry dressing, I can't remember the name of it but will check my "boob burn box" and post it up later, I got the impression from the oncologist and the nurses that mine were quite bad and that normally they wouldn't be, when are you starting your treatment.

Bloodybridget trumpton Brassica Snows how are you all, apologies to anyone I haven't mentioned.

[Skap]

For anyone on here with breast cancer ER+ and HER2+ NICE have just approved a new drug called Neratinib
There are a few other criteria but it's hailed as a new wonder drug for HER2 positive cancer. Not for me unfortunately as I'm ER- and it's license is only for patients who's diagnosis exactly matches the trial group.

[CointreauVersial]

@ellenanora5 - thanks for that. I'm not due to start radiotherapy until after Christmas, and mine will be aimed at the gap left by my recently-departed uterus. Plus a couple of internal sessions, and I REALLY don't fancy burns up there. I imagine I will be living in buffet dresses for the duration.

On the upside, I can be expected to lose my pubic hair. Great, will save on bikini waxes (every cloud..... )!

[Bloodybridget]

@Squiffy01 I'm very sorry to hear of your diagnosis, it must have been an awful shock. And the potential loss of fertility will be hard, if you were hoping for more DCs. I hope someone else who's had bowel cancer will show up to offer a voice of experience, but you will find lots of support here anyway. You should have a pre-chemo appointment soon, when you will have plenty of time to ask questions.
@ellenanora5 so sorry you have been suffering from the rads burns, plus joint pain and blurred vision - I've had those too, although the joint pain for me wasn't too bad. I had an eye test recently and my vision had changed a lot, maybe temporarily; I got reading glasses anyway (not using them much as they are hard to get used to after decades of varifocals).
@CointreauVersial glad to hear your cancer is stage 1, thank goodness it was dg early. That seems like a very harmless white lie to your DCs, sometimes better than unvarnished truth!
@Skap that is rubbish re hand rash and red eyes - hope it eases off soon.
@meercat23 poor you with bad muscle/joint pains. I hope it is a side effect, at least then there will be an end to it.
Fuck cancer and all its manifestations.
Thanks for good wishes and enquiries - my mouth is still sore but sense of taste seems to have improved since I stopped using the mouthwash. I haven't got much energy. Will have a good moan to the consultant tomorrow but I don't imagine she will see any of it as cause for concern.
@Brassica how are you getting on - is that clip giving you any trouble?
Waving somewhat feebly at everyone else!

[redspook]

I'm also sorry to hear of your diagnosis squiffy, and hope that you have lots of support around you.
Cointroversial - I had 25 sessions of rads simultaneously with 5 doses of weekly chemo, then 4 brachytherapy sessions. The main side effects which I can definitely attribute to the rads were tiredness and constipation; I had no burns at all. Maybe I was lucky in that respect, as I seemed to get the full works with all the other side effects. I lost my pubic hair (and no other hair) and it hasn't started to come back yet although I finished treatment at the end of August. I was also looking for the tattoos in the bath the other night and could only find two of the four so I won't be going to the tattoo fixers for a cover up.
I had very bad sickness, but believe that it was the combination of chemo and rads that affected me so badly so I hope you will not be affected.
Trivial though it may sound, rads are seriously tedious especially if you have to travel a long distance.
I'm sorry to hear that your burns were so bad ellenanora5 and hope that they improve quickly.
Sorry to hear of everyone else's trials, I echo Bloodybridget's fuck cancer sentiments.

[CointreauVersial]

Oof, redspook - radio AND chemo at the same time. I bet you didn't know if you were coming or going.

[redspook]

It was indeed truly shit, and I was warned that a number of people who undergo that regime develop PTSD. However, I'm ok mentally at the moment and most of the time it feels like it happened to someone else.
I have my follow up scans tomorrow, so I'm anxious about that but I'm hoping that any further treatment can't be as bad.
I don't know if you will experience the same cointreauversial, but as I had to have bloods taken every week for the chemo I had a weekly chat with the head radiographer who was nothing short of wonderful. Her advice and encouragement was invaluable to me, and she set the ball rolling to get me a syringe driver for anti sickness meds.

[CointreauVersial]

I really don't know what to expect, redspook. I like to think I'm fairly robust, physically and mentally, but who knows? Wishing you heaps of luck for tomorrow's scan; hopefully your full-on regime will have done the trick. What type/stage cancer did you have? Good to hear you are coping mentally, but from what I understand, there is a massive amount of support out there if you do feel you are starting to struggle.

[Bloodybridget]

Redspook hope everything is fine tomorrow.

[NaomiFromMilkShake]

Redspook have PM'd you.

[Bloodybridget]

Just a reminder that this thread is nearly full - anyone up for starting a new one?

[redspook]

Thanks CointreauVersial and Bloodybridget, I will be glad when the scans are done although I will then no doubt wind myself up waiting for the results.
I was originally told that I was probably Stage 3, but subsequent correspondence stated it was 2b. I have (or maybe had) a 5cm endometrial/cervical tumour with para aortic lymph node involvement, so the radio targeted the lymph nodes as well as the primary tumour.
I feel that one of the reasons why I feel OK mentally is that I have kept it secret, as I am now carrying on with normal life without the cancer defining me to everyone I know. I do take on board however the risk that if/when my sons are told about it they may be hurt at not having been told sooner. These decisions are very difficult aren't they?

[digerd]

@ Cointre*
I expect you will be having Pelvic radiotherapy as the external beam type which is what I had but for bladder cancer. I experienced no burning of my lower abdominal skin at all. Wonder if it depends on the strength of the radiation. Mine was 66gy, called "radical external beam radiotherapy" and was for 33 daily sessions during 6.5 weeks with weekends off.. Presumably lower down for the bladder than for the area where the womb was. I have no experience of internal rads at the gap where your womb was or anywhere else.
I did not have any nausea from the rads, but I did continue losing weight after rads and ended up at 6'5 stones. after 4 months I have managed to regain 1 stone but no muscle tone only flab round my
middle. with spindly arms and legs .
Macmillen have a booket called "Pelvic Radiotherapy in Women- managing side effects during treatment" which I got free from the hospital. Good luck

[CointreauVersial]

@digerd -- thanks for this info. I think I have that book, although there is nothing better than hearing real life stories. Not sure of the techical details of the radiation strength; will know more next week. Good to hear you didn't have too many nasty side effects; I could probably do with a bit of weight loss, having spent the last three weeks on the sofa chowing mince pies. But maybe not too much. Have you been able to get back to any activity recently to build up your tone again?

There isn't really a "gap" where my womb was; apparently everything else just shifts about to fill the space. The internal radiotherapy (brachytherapy) is delivered vaginally; only need two sessions of that, thank goodness.

@redspook - I'm a chronic over-sharer, so how I haven't broadcast my cancer to the world I don't know. I do feel more ready to tell people, now I have a good idea what I'm dealing with. But I totally get the bit about not being "defined" by cancer. I do NOT want people's sympathy or pity. I told my boss at work, because I needed him on board with any absences from the office. A few close friends know, as does my DDad.

[Bloodybridget]

Great news for me, scan results absolutely fine!
I'll have three-monthly appointments for two years, they'll do blood tests and have a feel of my tummy (not scans unless it looks like something is wrong).

[Trumpton]

New thread #73 HERE

[Trumpton]

@Bloodybridget
Fab news . You opened this thread and what lovely news to end this thread on .

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