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

Hi diamond is it possible to book a telephone call with your GP to go through it with you at all? They may be able to put your mind at rest as to normal practice. This is not an area I am familiar with, but I know when looking at my breast ultrasound, different things are different colours. Fatty lumps glow up white and cysts are black (tumours grey) I would imagine they would be the same anywhere in the body.
If they believe it to be a cyst, then I'm sure what they have done is correct, but definitely worth getting a 2nd opinion to put your mind at rest given there was gas hindering their view.

pandora that sounds painful. My PICC line took a while to settle down, but it is slightly different, so never had to deal with any jiggling. Did you have chemo today or was that to do with the fitting of the portacath? Apologies if you said up thread, I do not dare to scroll far with my iPad or I lose the post I am typing on. Good luck with the scan results 2mo.

mrswhip always nice to have something unusual eh?! I hope he does his research and you get the outcome you are happier with. Is your gut feeling for an additional op to make sure they have the margins? Or are they likely to give you radiotherapy to the area as an alternative. Best wishes whatever they decide on & hope you are not wondering & worrying for too long.

purple not too bad if you say it quickly! You will have to recline with lots of none cough inducing snacks/drinks. I would imagine laughing & sneezing can be added to the list too.

Lesley sorry to hear you have so many things affecting your lungs, hopefully the breathing techniques mantis need will help too. Did you get on alright at the gp's and are they any better today?

Been thinking of you today planned I hope you made it home again for a visit.

Well chemo was a breeze with no cold cap. I literally had time for a cup of tea & glass of water. My stronger nausea meds wiped me out & I have slept all afternoon. Feel a bit weird, but not sick so that is good.
Let's see what tomorrow brings.

Waves & hello to everyone and also enjoy your time away ranout before the mayhem starts next week.

lesly apologies as didn't spot a predictive text fail. I think I meant to say up thread rather than mantis need. My brain is not carrying me very far just now!

Thank you Leslie

Planned Thinking of you. I hope you get some clearer answers today. Terminal doesn't mean no available treatment options so I would expect your medical team to provide a plan for you. It's so hard and unfair .

noodles44 unfortunately radiotherapy and chemotherapy don't work on phyllodes tumours. The only cure is surgery. One part of me wants them to just keep a close eye on me and the other part wants them to go back in just to be sure. Kept waking up last night thinking about it. I'll wait for the surgeon to decide. Whatever will be will be.

Ouch Pandora, a hot water bottle held over the port should help if you can bear it. Good luck with your scan results today. I'm keeping everything crossed for you

Hope you're still feeling ok today Noodles and the antisickness are still working

Planned let us know how you get on. You should be offered some sort of chemo depending on what the doctors think is best

Just being wheeled down for endoscopy now as they've decided they do want to do it as it may have started in the stomach.
Get the big meeting at 1 so I should know more by 3ish.

Good luck planned. Hope you get a plan soon, and some answers too

Good luck Planned we're all thinking of you

Thinking of you Planned

Good news. The cancer is in some of my lymph nodes so I will be having auxiliary clearance when I have my mastectomy at Christmas but it's not sprwad anywhere else.

The consultant ran everything through an algorithm. 55% chance of making it to 5 years but this didn't include radiation or the second chemo drug which add extra percentages so she is very optimistic and we are looking at 65% chance of getting to 5 years but they will know more after surgery at Christmas.

Bone scan showed I've got osteoartitis in both kneea and ankles and my calcium levels are low. Also started on oramorph but hopefully the chemo will reduce the swelling a bit more and the pain will go.

And the consultant has cleared me to swim so after the port settles down I can start swimming to get this weight down.

Also the lovely ladies at Macmillan and going to go through my pip with me so a little bit more money would help with get a taxi to and from chemo and so I can go swimming as my exercise and meditation.

That's good news Pandora I'm on oramorph and it's really handy to stop the pain quickly when you need too

Macmillan are fab, I've only needed to ring them about benefits but they sorted it all out for me over the phone

Delurking to wish Planned luck and best wishes for today

Also to send best wishes to Pandora - so glad you've finally got your results and have a plan now.

I posted on here just over a year ago - from what I remember it was just minutes after being told I had breast cancer and was sat in the waiting room at the breast clinic waiting to the see surgeon (having just had the scan confirming diagnosis). I was so terrified and shocked I never came back to post further on here. Fast forward a year and I have completed treatment and am pretty much recovered (I'm 46 and had a grade 2, stage 2 ER+ invasive ductacl carcinoma). I had chemo then mastectomy with reconstruction and am now on Tamoxifen and living life as normal really. I worked throughout my treatment (flexible p/t from home luckily but it was financially necessary to do it).

Regarding PIP and financial advice, I found Macmillan a bit patchy with their advice. They told me I probably couldn't claim anything, but thankfully a support worker attached to DD's school visited me at home and helped me do a claim and I got a reasonably high level of PIP. It is rather arbitrary though - a friend who has an incurable and extrememly debilitating cancer was awarded a lower rate (they told her she looked like she was coping ) and someone else I know who had to close her business before she started chemo was told initially she wouldn't be entitled as she had a business.

So basically, it's non means tested and so do claim and make sure you answer the questions in a 'worst day' scenario.

Not sure if this is of interest to anyone, but I fasted throughout chemo (ongoing research is showing that this can reduce side effects and possibly increase the effectiveness of the treatment). It's not for everyone but I found it very doable. I'm not sure how much of a difference it made overall but if anyone wants any futher info or to read more about the research, please do shout.

Massive hugs and respect to all of you on here - it is utter shit being given a diagnosis and even as someone who's been there it's hard to say the right words xx

Thank you Twitter & noodles - i didn’t realise just being tested for cancer could have such an effect on my mental health, you jog along with life & one day you wake up & you’re facing months of investigations for cancer. It comes out of nowhere & really makes you realise just how precious & vulnerable life is. It definitely changes you.

I read everyone’s posts on here & my heart goes out to you, I don’t know where you find the strength as I’ve been a complete wreck & I haven’t even had a diagnosis.
You are such an inspiration. xx

I'm on holiday so I'm just checking in quickly :)

planned I hope that you get some more information today and that your endoscopy went smoothly

Eagle lovely to hear that you've come out the other side of all the treatment now. How are you feeling? Interesting about the fasting. I looked into it, but I have a 46 hour chemo pump so I decided it wouldn't be feasible to fast for the whole duration plus beforehand. How long did you fast for either side of the chemo infusion? I sometimes have to do a fluid only diet for my adhesions and tbh in many ways I feel much better for it!

Pandora that's good news :) I love swimming. Hopefully you'll be back in the pool very soon! Sorry about the osteoarthritis - I hope that improves quickly.

noodles I'm glad the chemo went more smoothly this time. May the side effects be minimal and short-lived

Minnie hopefully you're all done and full of post-op toast by now!

purple how are you doing today?

Waving to everyone

Quick one as I'm on a weekend away but @EagleRay I'm interested in fasting. I start chemo on Tuesday and have been reading about it and would like to give it a go. However since were away I would have to start on Monday which gives me about 36 hours before chemo. Any info would be useful.

Hello all, I’ve not been around for a while. I had my 4 year checkup this week which is now done by phone at my local hospital, all seems ok. One more mammo next April and that will be my five years done.

I’ve just read back a few pages and I’m really sad to see what’s happening, particularly planned, we’ve not ‘met’ before but I’m so sorry to hear what’s happening with you and like others completely understand the emotions about your children.

I’ve had a horrible shock today, the husband of one of my best friends has been suffering from stomach issues for a couple of years and much more in recent weeks. Finally a gp arranged a colonoscopy for this morning and he’s been told cancer, op very soon and more tests. I don’t know any more, leslie my friend has really looked out for me over my treatment and I really want to help her now. Could you give me a bit of an idea of what might happen re testing etc and what they’re in for. I’m really worried as this has been going on for so long and he’s ignored it but now lost over 20lb in about 6 weeks. Seems to have become much more ill quite quickly. Thanks

mrsrhod that's great about your check up. Sorry about your friend's husband. They'll presumably do a CT scan and possibly a PET scan to check for spread. The surgery varies a lot depending on the location and size of tumour - he might need a temporary or permanent colostomy or ileostomy, or he might just have a small section of bowel removed and joined back together. From what you've said I would assume it has spread to his lymph nodes by now so he will need chemo too. The Bowel Cancer UK website is quite good for more information. Sorry, that's all quite general but there's so much variation in treatment!

leslie thanks for answering so quickly. I was afraid of spread too, it’s been going on so long undiagnosed. I’ve had a quick look at the website. I’m a bit familiar with it because dbil died exactly two years ago from his second round of it, first time it was just an op but 15 years later it returned much more aggressively. His two daughters also have it. I’m thinking if it’s just a tiny patch they wouldn’t be looking for spread, but I’m just relating that back to my bc.

That’s me finally got my one stop breast clinic appointment next Thursday, 6 weeks after ‘urgent’ referal 🤔, I’ve had to fight and fight to get it this soon though.

Decided to finally tell my mum about it, I’ve been not wanting to worry her but if somethings wrong it will come out the blue and be much worse for her, and if it was my DD I’d want to know. However getting hold of her to tell her is hard as she’s never still long enough...

Hope everyone has a good weekend, very wet and miserable up here.

I'm de-lumped They had to put a wire into the lump pre-op so the surgeon could find it.
No toast though! I was looking forward to seeing what they do at my hospital. I had a sandwich and chocolate biscuits.

mrsrhod I think they always scan with bowel cancer because there's no equivalent to the sentinel node biopsy they do with breast cancer. Plus it's generally more advanced by the time it's diagnosed. How are your nieces getting on?

PenApple I'm glad you've got an appointment, but sorry you had to fight so hard for it. Good luck with your mum :)

Minnie yay! I hope you heal up quickly sandwich and biscuits sound good.

I'm going home just waiting for the pharmacist to drop my injections off that I have to do at home. Not looking forward to them or the car ride home as it's still all pretty painful but looking forward to being back in my own bed.

I'll catch up with everyone when I get back. and for those who need it xx

Goodness, that's quick! Excellent news :) I hope the pharmacist hurries up. Are they blood thinning injections? I have them too. It might help to hold a pillow or folded blanket or something against your tummy during the car journey.