We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

That sounds similar to my timescales. I was told they needed 3 clear weeks between the planning scan and the first go at zapping.

I had no problems with radiotherapy, probably my “favourite” bit of my magical mystery cancer tour. The team in my unit were so nice and you get into your little routine so fast.

TQ me too.

Hi,

Ineedabiscuit I have breast cancer. They already know it is in one lymph node after doing a biopsy (it was a swollen lymph node that I spotted) so I am having chemo first before an op. It means any stray cells are more likely to have been zapped. I have just done round 5 of 7 chemo's and am not sure how long after chemo my op will be where they say will remove the lump and also clear the nodes under my arm. Mine is hormone positive, so I keep getting a random hot head/sweats since starting treatment. I am 46 so will have an early menopause probably when I start taking tamoxifen.

ranout how are you doing? Have you got the meeting this week where they look at shrinkage? Mine had shrunk a tiny bit after 2 chemo's (but not much) which is apparently quite common. Just to say that I seem to be avoiding the worst of the docetaxel side effects this round (as you said you were considering requesting not to have it & stick with what you are on if it is reducing it) I have flu feelings & have slept a lot, but no dire rear & strangely my system seems to have gone the other way instead this time. Am just drinking lots and eating fruit as a bit scared to take anything. I def feel brighter this time & wonder if it was because the 1st Docetaxel was given 2 weeks after EC and the combination of both lots gave me rubbish side effects.

Those breathing excersises sound beneficial lesley like you say, if they make you feel better it is worth it. I did a great Pilates class at the cancer centre & intend to continue with it. It was not often on over the holidays, plus I felt too sick on my last chemo to join in! Looking forward to doing it when I can though

I hope everyone has a good day & all hospital appts go smoothly. Good luck TQ for late

Posted too soon. Should have said good luck TQ for later today

Hope all goes well today TQ

Best of luck for later TQ

Lots of luck @TwitterQueen1

@noodles44 thanks for giving me some info on Docetaxel.

I've got an mri this afternoon then oncologist on Thursday so I'll keep a very open mind. They have told me numerous times that their not sure the chemo will reduce the tumour so any reduction would be nice.

Been to do a couple of hours work now lurking on the sofa before I need to head off to the hospital! (Should really be tidying after the weekend whirlwind aka DCs and DH!)

Hope everyone has a restful day.

Thanks for all the good wishes everyone.

Disease is progressing and "options are running out" so chemo is the step. I am being referred to Oxford though because that's where the specialists are. They will tell me whether there are any trials available that might be suitable and I will decide whether I want to take part in them. Oxford is a right royal pain to get to though so I'm currently torn between wanting to go into a trial and not! I'll have to get friends to take me or take 2 trains and a bus / taxi. It's a lot to ask of friends to do that every week. I don't think I'll be able to drive because of the anti-sickness meds.

Chemo will be weekly, another royal pain. I guess I will have to have a picc line now. I've resisted so far - just the thought of it makes me feel weird. It'll either be Paclitaxel on its own or with something. I'll be a baldie again!

No surprises really but it's very sobering when you know you're moving on to the next inevitable stage.

Aw TQ I was really hoping you'd have better news, I'm on Paclitaxel as well as another chemo that I can't remember right now.
Having it weekly in a hospital far away is a right pain. Have they said how many rounds you will have?
Is it worth looking at the volunteer drivers for the hospital? Although I'm sure your friends would be more than happy to help. If I lived any closer I'd gladly come and take you myself. Cancer is such a fucking shitty horrible disease if there's ANYTHING I can do to help, anything I can post to you then please let me know

Hi TQ

That sounds like a really difficult appointment.

Oxford is where I’m treated and it is fab. Really really good. If I can help at all just let me know. I’m an expert in how to get to the Churchill from basically anywhere . It’s a nice centre though, loads of super clever specialists, tons of trials and lots of really caring people. You will be in good hands, though I know none of that is comforting right now because really you just don’t want any of this to be happening.

I absolutely love my picc line and had to beg to have one put back in. I think they’re ace.

Do you have someone with you this afternoon? I hope so even just to sit and not talk.

if you can face it, if not.

Bugger TQ I know you were expecting it, but it's still a blow to know for definite hopefully there will be a good trial available. It's a pain about the location. If you don't do the trial, will you be at RBH again? You could ask for a Portacath rather than a PICC line. When it's not in use it's completely hidden. You can only feel it if you actually touch where it is. You can have a look/poke of mine next weekend if you like :)

ranout good luck with your MRI

waving to everyone else. My iPad is being annoying again so can't type much

TQ perhaps you would qualify for patient transport? Worth looking into it although I suspect there will be a bit of waiting around. A bit like with a PIP assessment you shouldn’t minimise how poorly and tired you feel.

Ineedabiscuit I've also got a 16 year old son and I think that's the hardest part of all this, although it must be tough with young children teenagers are able to google things and worry themselves sick. I've told mine about the treatment and that it's not as scary as he expects it to be. Is your son at college? If he is it might be worth letting his tutors know what's going on so they can keep an eye on him

Aimless I definitely won't be out partying for my birthday this year. A day of feeling well would be nice it's my brothers birthday on Saturday and mine on Sunday so I'll probably just have the family round

@TwitterQueen1 what horrid news. I echo everyone else see if you can get patient transport. I was offered it interestingly. I don't know if it's different rules for different hospitals.
@WhatWouldLeslieKnopeDo MRI went fine thank you. It quite nice to lie down for half an hour!
Waves to everyone else.

Bugger bollocks bugger twitter I'm very sorry to read that.... I hope you can work out a way to get to Oxford...xxxx

purple I meant to say, I thought of you earlier. I was in the loo in a café and they had purple unicorn hand wash!

ranout I'm glad it went alright. I nearly fell asleep in my last CT scan

I already have it Leslie! And unicorn bubble bath

purple I'm glad to hear that

Namechange good luck for chemo tomorrow

Sorry my return button isn't working so I have to do each new line in a new post or it would be rambly. I saw my GP this morning to review my fentanyl patches. While I was there she listened to my chest and checked my obs but thankfully it's all clear and she thinks the cough is viral. Phew. Also the swab from my belly button infection didn't show anything nasty just normal skin bacteria.

TQ sorry you are now being faced with this. Even if expected, it must still be a shock. I hope a good trial is available for you (that is more convenient transport wise, or that you are able to utilise patient transport for if it has to be in Oxford) weekly chemo sounds awful though, plus a ball ache to get to on top of feeling crappy.