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

Good morning @purpleunicorns did you manage to get off to sleep again?

I'll catch up later as I'll have more time.

Quick question. I start chemo today but I think my DH has a tummy bug will o be ok to drive afterwards I gave after all my other appointments picc line insertion included.

Knicker she's a character in a comedy called Parks and Recreation. Lots of people have told me I'm quite like her I highly recommend Parks and Recs if you need something lighthearted and silly.

Sorry you were awake so early purple I hope you got back to sleep

ranout I hope all goes smoothly today

Good luck Bravo and purple and anyone else with appointments of any sort today.

Good morning everyone else!

@ranoutofquinoaandprosecco I wasn't allowed to drive after my first chemo session - it was a pain as I had no one to come with me but managed to find a friend who could pick me up.

After first session I was allowed to drive and it was fine. Is there anyone who can give you a lift today? Hope it goes ok

Cross-posted ranout no please do not drive until you know how the drugs will affect you. Mine make me feel completely out of it and there's absolutely no way I'd be safe to drive. (I imagine it's how people feel if they're high!) Lots of people are fine to drive so hopefully you would be too, but it's not worth the risk if you're someone who reacts badly.

Could someone come and pick you up? Or get a taxi? The hospital might be able to arrange transport if you explain the situation, but I'm not sure if it's too short notice for that.

Ooh not heard of that, thanks Leslie. She's very pretty

Ranout if your husbands got a bug keep some handwash on you and don't share towels etc. I know it's hard when you live with someone but you don't want to be catching it when you're having chemo as your immune system will be rubbish. But yes to getting him to drive you the first time as you don't know how you'll react to chemo. I would have been fine driving myself but everyone reacts differently

Good luck today TQ. Hope whoever you see knows what they are doing and they get it sorted for you

I stopped the loperamide yest lesley I had double the dose of my last round and for longer. I am also on cyclizine x3 a day until next chemo. I feel quite nauseous now I have got up today which is a pain.

I feel for you with the hair as the temptation to keep it in something that resembles a style you might want is very strong. I definitely feel better for shaving it off as it stopped me getting as upset when it was falling out and sped up the inevitable.

ranout I hope you got lifts organised alright. What awful timing with the tummy bug. Hopefully it was something your hubby ate that disagreed with him rather than a virus doing the rounds.
I am dreading my youngest picking up chicken pox when she starts school, hopefully we will avoid it as she has done so far when at nursery etc.

I hope you managed some more sleep purple and it goes well with the stoma nurse today.

Good luck with the formsTQ

Waves & hello to everyone

Hey all. I'm so tired again. I'm sleeping on and off most of the day. Then when I wake i have a brief moment where this is all just a horrible nightmare but then reality soon hits.

And the anger, wow it's there constantly. Angry that this wasn't picked up at a grade 1 or 2 when my chances would have been so much higher. Anger that the chemo makes me nauseous and so tired. Anger that I've got to lose my breast and have auxiliary clearance and rage that even all that might not be enough. Angry at the pain that's ahead.

Just had a phonecall from the GP. They need to speak to me about my ultrasound but noone is available to until tomorrow. Anxiety is through the roof, why on earth would they tell me this and put me through this tonight

@Pandoraslastchance which anti sickness meds are you on? I switched after the first cycle to Domperidone which worked better and didn't knock me out so much. Totally understand your anger 😞

@BuzzKilllington yes that would send me up the wall with worry too, because I find that sort of thing very anxiety inducing (not because I think they necessarily have bad news for you). It's a fearful time when you're having treatment and not everyone is sensitive to this

Update on my fascinating universal credit (UC) saga... I have been doing it ALL WRONG. When I initially rang to apply for employment support allowance (ESA I was told I couldn't do it over the phone and had to enrol into the whole UC process. Which I did. I was sent forms to complete, which I did, and was told to ring for an appointment, which I did. This was the appt when no-one was interested in any of the forms I had completed because apparently it was the WRONG KIND OF APPOINTMENT. Same team of people, same place, but nevertheless, wrong.

Same thing happened today, until after half an hour or so of me providing my DD's birth certificate, proof of savings, refusing to fill in work-related forms etc, the 'coach' asked me whether I'd applied for ESA and I said "but this is what I'm doing here today!" Except I wasn't, because it was a UC meeting....... Initially they said I'd have to go home and book another appt for Sept, but then they decided they could make the ESA claim after all because I had everything with me. So they were extremely helpful in doing that, saving me yet another appointment and more waiting.

So, new-style ESA is not part of UC (yet) and PIP is separate again, so there are 3 different application processes. I kept saying I didn't think I was entitled to UC and I was only applying for the work-related component but I used the wrong words...

Rant over..

Hello all waves

I was kindly pointed towards this thread by WhatWouldLeslieKnopeDo

I've recently started the process of investigations for Bowel Cancer (not something I thought I would ever write at age 24). Had bit of a manic 24hrs tbh with Cancer unit on phone to me a few times talking me through the steps, support groups to contact and booking in of my colonoscopy. I know it's not been officially diagnosed yet but feels like the professionals are all talking to me like it has which is freaking me out. Luckily work let me take half day today and all of tomorrow off as I was in tears in the office.

Is it normal for the health professionals to be moving things so quickly and to be assuming the worse?

TwitterQueen1 I take my hat off to you for sorting it all out despite the fiasco of confusion! Honestly have no clue how people manage UC and other benefits systems etc, so bloody difficult to navigate! I tried to set up tax free childcare recently and gave up as I was so confused. Luckily my HR helped me set up with higher scheme instead.

*voucher

What a nightmare TQ. Hopefully it'll be more straight forward from now on. I haven't applied for esa yet but Macmillan said they could do all that for me once my PIP is sorted out

Pandora you have every right to be angry and I don't have anything else useful to say. Although do ask about changing your anti sickness tablets, there's no need for you to suffer any more than you have to

Hello Twittle, hopefully you won't need to stay long. Don't worry about things moving too fast, they do that just incase it is cancer. Leslie is our resident expert on all things bowel related so please feel free to ask anything you want

Thanks for the messages my DH poisoned himself last night! I'm pleased he picked me up as I'm shattered but otherwise feel ok. Although I was there 08.30-6pm so feel a bit windy and bloated from all that sitting around!
I'll update better tomorrow. Hope everyone gets a decent night sleep.

TQ that's an absolute shambles! Hopefully you won't need to go in again and they sort out your claim quickly.

Only 4 radiotherapy sessions to go. They had made the bit for me today so my session did go ahead (after the usual delays) but then they couldn't get me lined up properly so I had to leave the room and wait then go back in. Took about an hour to deliver a 30 second burst of radiotherapy.

Hope tomorrow goes a bit quicker

The one thing that pissed me off above all else was that I had to ask for a private room for the interview. There were 2 security people, 1 manager, 4 people at desks in close proximity and they seemed to think I was unreasonable for wanting a private room. "You didn't request one." "I will take at least 10 minutes for me to log in." "It's quiet in here today, no-one is around." I'M NOT GOING TO DISCUSS MY TERMINAL CANCER AND INABILITY TO WORK IN PUBLIC YOU IGNORANT FUCKERS." (I didn't actually say this).

Twittle/TBee so sorry you find yourself here. Hopefully it will be a short stay.

Twitter maybe you should have said exactly that! Some folks seem to just totally forget that although it's their job, we are still human beings. That are not necessarily in a good place. Hope you gave them a good Paddington Bear stare...!

TQ . Think you probably should have said that

Evening all, just popping in to offer hugs, chocolate etc. We've been on holiday for a couple of weeks and the thread races away so apologies for no name checks (except leslie of course !).
I hope everyone has a peaceful evening.
I'm quite excited as post cancer I put on roughly 1lb a month so nearly 2 stone, since I had my ovaries removed 2 months ago I have lost a whole stone! I have been eating salad a lot, and trying to resist biscuits, but not actually dieting. On the downside I now bruise really easily and have noticed a bit of hair loss when brushing so old lady thinning hair may be catching up with me

Waving at pepper I hope you had a lovely holiday :)

Twittle glad you've found your way here. Bit odd to be directing you to support groups already but I suppose they're trying to be thorough. Do you have a date for your colonoscopy yet? I was diagnosed at 21, but nobody suspected cancer and apparently the GP nearly fell of her chair when the cancer nurse phoned to tell her! There are a couple of other bowel conditions that can cause similar symptoms. Hopefully you won't have too long to wait for a diagnosis.

TQ ugh what a mess!

chase glad today's session went ahead, but sorry it was such a faff! The end is in sight :)

ranout the first session is usually slower so hopefully you won't be there so long next time. Sleep well

Buzz argh no wonder you're anxious. I hope you can speak to someone ASAP.

purple how did it go with the nurse?

noodles if the cyclizine isn't working you can have other meds as well so keep whinging at them!

Waving to everyone. I hope you all sleep well

Quick one @EagleRay when you were fasting did you take your antisickness and steroids with a little bit of food or just ignore the advice? I told mine with water yesterday and had a banana last night. It was blinking hard to say no to the scones, cakes, biscuits, sandwiches, chips and soup they were waving in my face!
Didn't get much sleep last night. Hoping I was just overtired. Although the I know I need to be aware of the steroids and not take them after is it 3pm today?
For all of you newly diagnosed I hope they get a plan in place for you soon.
For you guys full of advice, I wish you hadn't had to live through this to be able to give us your advice but it is so useful.
Guys having benefits troubles, keep pushing it will be worth it.
Hope everyone had a good nights sleep.

I'd take them even earlier than 3pm if you can ranout. They usually say lunchtime, which is a bit vague. Is it just two doses a day? I take mine at 7am and about 12pm. Even then I don't always sleep much. Luckily it's only a few days in each cycle.

Is it dexamethasone? I have stopped bothering to take mine with food. I have also been prescribed it for my adhesions when on fluids only so obviously couldn't take it with food and it didn't seem to do any harm. Also my hospital's pharmacy has stopped printing "take with food" on the box now so I decided it can't be that important! It's easier to take it with my other 7am tablets, but I'm meant to take them half an hour before food.

I slept quite badly and feel bleurgh this morning. We are heading home later today so hopefully I'll sleep in the car!