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CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

(255 Posts)
WhatWouldLeslieKnopeDo Fri 27-Oct-17 20:36:49

Welcome everyone to a shiny new thread smile

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it flowers

Our previous thread can be found here

StilaOnTheWrongPlane Fri 27-Oct-17 20:42:57

Ahh a lovely new thread that doesn't take 20mins to load grin
I'll just c&p this
Hi everyone ,
Some new names on the thread, sorry that you find yourselves here , and so sorry to read the news on Chewing

Biscetti My 5 weeks of radiotherapy covered Christmas and new year (2015/16) . I had rads Christmas eve morning (Thursday) and the next one was the following Tuesday (29th) . However I know they did get a few people in on the Sunday and Monday but they were people who were at the very end of their treatment. So chances are you might be 'off' 23rd, 24th, 25th and 26th.

Someone asked about cold capping ( sorry can't find the post now to check who) I used the one thats plugged into the machine and had pretty good results . I kept being told "oh so and so used it , it didn't work" so my approach was - I will give it a go , if it works . . .great , if it doesn't . . .well Ive tried ! From my experience, my top tip would be layers ! Day before I started chemo I had my graduated bob thinned out , it was the longer bits of hair that I lost .

Hi purple , sorry you are here. My cancer is that area as well (endometrial stage 4 , spread . . . bloody well everywhere, part of bowel removed along with hysterectomy).
I'm sure I have that booklet in my extensive Macmillan collection wink

Leslie hi , hope you have a fabulous time tomorrow night .

Hope eveyone else is as well as can be flowers

VampireImNot Fri 27-Oct-17 20:55:20

Just saying ‘hello’ so I can find this thread again easily.

New to all this - from nothing other than vague symptoms to leukaemia in the last two weeks. Really appreciating these threads!

WhatWouldLeslieKnopeDo Fri 27-Oct-17 20:58:19

I've copied this over from the previous thread. If anyone has anything to add to it then please let me know and I'll add it a revised edition smile it's mostly focused on breast cancer as that is what most of the gang have, so any tips from those with other types would be handy!

Lacies' guide to cancer

Disclaimer: none of us is medically qualified and everyone is different. This is not medical advice. Please check with your medical team before making any changes.

This is a work in progress. If you see anything that is incorrect or if there's anything you think should be added, please either post on the thread or PM me and I'll add it to the next edition.

This is just a summary of some of the advice given in recent posts, but please don't feel that you cannot ask questions.

There are not really any rules around here, though we tend not to be too keen on head tilting or talk of "bravery". Our main rule is DO NOT GOOGLE. Especially when you are waiting for a breast clinic appointment (or equivalent for other cancers). Wait until you have a concrete diagnosis (there is a good chance you will not be diagnosed with cancer at all!) and then stick to legitimate websites.

General tips

- Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website
- Get a notebook to take to all appointments and write down any questions you have in between appointments so that you do not forget them
- Take someone with you to results appointments
- If you need travel insurance, you may be better with a illness/cancer specialist provider
- Check whether you have critical illness cover etc.
- Get paperwork etc. sorted before starting treatment as you may not have the energy
- For those with young children: arrange babysitters/playdates, inform the school so they can provide support, prepare distractions e.g. DVDs for when you are tired
- You might have a local Maggie's Centre or Haven (breast cancer only where you can get support. Some towns also have their own cancer centres
- If you have an iPhone you can record details of your diagnosis, medication etc. in the health app so they can be accessed in an emergency

Tips for chemo

- Have a dentist check up and hygienist appointment beforehand (dental treatment is best avoided during chemo due to infection risk and some types of chemo can damage teeth)
- Consider a cleaner and/or laundry service to relieve some of the pressure at home
- Fill freezer with pre-prepared meals or buy some ready meals in case you don't feel able to cook
- Accept offers of help e.g. with school run
- If you want a wig, try and get it sorted before starting chemo
- Keep a symptom diary so that you can get to know the pattern and so you do not forget anything in between oncology appointments
- See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes
- You can find information about the individual chemo drugs or regimes on the Macmillan website here (also ask on the thread as lots of posters here are likely to have experience of the drugs you're on)
- Stock up on things you might need such as loo rolls, flannels, soft toothbrushes...
- Audiobooks can be useful if you are too tired to read
- Consider packing a hospital bag in case you have to go to A&E with an infection (see below for list of useful things to take to hospital)
- Take some distractions to chemo with you so that you do not get bored (e.g. book, tablet, puzzle book, crochet...)

Tips for a hospital bag

- Earplugs
- Eye mask
- Drinks and snacks (hospital water often tastes funny!)
- Flip flops for showers
- Phone charger
- Notebook and pen
- Change for refreshment trolley, vending machine etc.
- Front-opening pyjamas might be useful after surgery
- I haven't put any bras here as recommendations seem to vary, so post on the thread if you are having breast surgery and people will be able to suggest a suitable post-op bra depending on your requirements
- Sweets for dry mouth
- Wet wipes and dry shampoo to freshen up if you cannot shower after surgery
- Hand cream and lip balm as hospital can be very drying

Tips for surgery

- Follow surgeon's activity restrictions post op
- Be prepared to get a bit emotional immediately after surgery. There will/may be pain, swelling, numbness, large incisions, drains and you might not have a nipple. You may come out wishing you hadn't had the operation, though this phase may be short-lived. Marshal your DP/friends/whatever form of emotional support you need to get you through
- Don't take the pain silently, discuss anaesthesia options before surgery, and after surgery you can ask your physician for appropriate medication
- Keep a glass of water (straw helps is you can't sit up properly in first few days) or bottled water (I liked the sports type squeezy kind, but then again I had an unaffected arm) handy at bedside especially at night for when you get thirsty. I felt very dehydrated after surgery
- Pre op, check with your surgeon or BCN on what to buy beforehand: support bra (what size; any recommended type or brand), bra extender, knickers, etc. Don't go overboard buying loads as you're likely to move out of oversize bras and the extender relatively quickly
- Post op advice can vary: check with your surgeon or BCN on support bra, binder, compression garments, when you can shower/have a bath/swim, etc.
- If you want it, request a copy of your post-surgical pathology report
- Explore scar reducing options with your GP/surgeon -- some items may be available on prescription: Kelo Cote, silicone sheets, post-surgery massage
- Work with physiotherapist on regaining range of motion and strength (example online brochure always check with surgeon/physio on what exercises are appropriate and when. The link is from the Breast Cancer Care forum - some patients hadn't received advice about post op exercises when sent home, or hadn't been referred to a physiotherapist
- Ask about lymphoedema risk after surgery and if there are any precautions you should know about

Useful links

Macmillan
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)
Beating bowel cancer - some very useful factsheets/leaflets available to download
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
Mumsnet thread for those supporting a relative with life limiting diseases - I hope they won't mind me sharing the link here as they seem like a friendly bunch, but this thread may be of interest to anyone with a relative with cancer. There are some other similar threads in the life limiting illness topic as well.

amber's words of wisdom

If you've read through any of our threads then you're likely to have come across reassuring posts from amberlight. She is not a doctor, but reads lots of research papers and provides us with the highlights. I have selected some snippets that seemed most relevant. If in doubt, or for more information, please refer back to the original posts which are on thread 57 here

- Found a lump? 9 out of 10 will be benign.
- Found out it's breast cancer? 19 out of 20 will be just in the boob. And can now be removed/zapped/poisoned successfully.
- Found out it's breast cancer that has spread beyond boob and armpit? If it's in just one other place, we're seeing results where 80% of those can still be zapped/surgeried/poisoned and it works.
- If it's in more than one other place, e.g. liver, bones, lungs, then teams can give up to seven different forms of 'holding treatment' for many sorts. That means that it converts it to a long-term nuisance, similar to living with diabetes or similar. Annoying, certainly. There are no guarantees. Some will have a sort that is truly tricky. We'll never deny that.
- Pretty good research happening around sensible amounts of cheery exercise, e.g. brisk walk every day. A glass or two of red wine now and again. Vitamin D. Curcumin and black pepper supplement. Lactoferrin supplement. Avoiding bright white/blue light at night as much as possible. Having a cheery social network. The oncology journals are reporting the findings on these. Talk to your teams about what they think might help.
- I know that sounds weird, but (generalising) faster growing cancers are greedy, and drink chemotherapy and other potions at top speed... thus dying horribly and fast. It's the slower growing ones that can be more tricky. On the oncology graphs, the difference in life chances between slow growing and fast growing is barely enough to register. Both are excellent now. It's just info for the specialists, so they know which potions and zappings to use.

purpleunicorns Fri 27-Oct-17 21:02:52

Copy and pasting this from the last thread to hopefully the right person this time grin

Stila sorry that it’s spread to stage 4, I hope whatever treatment you’re getting is helping. I’ve read lots of stories of people being diagnosed with stage 4 and are now in remission, I hope that’s a possibility you too flowers

TwitterQueen1 Fri 27-Oct-17 21:03:39

Hello all. Introducing myself with a long story short.
Stage 3/4 ovarian cancer, dx in March 2017. 3 months chemo to reduce melon-size tumour, followed by debulking hysterectomy. Resumed chemo end Aug. Finished this week, 25th Oct (yay) and now moving on to maintenance regime of 3-weekly Bevacizumab as part of IconB trial.

Single parent, 1 DC out of uni and just started new job. Two other DCs both at uni. Lost my beloved dog in January and still missing her terribly. Working full time from home with understanding and accommodating employer.

Massively pissed off at having to stop line-dancing (body and mind not up to it), walking (toenails coming off because of chemo), dog-ownership. Plus the whole cancer thing too of course. Currently v knackered, mostly bald, getting worse before I get better. Ask me anything.

purpleunicorns Fri 27-Oct-17 21:06:07

shocktoenails coming off? Oh god side effects of chemo are probably not something I’ll be looking into just yet

WhatWouldLeslieKnopeDo Fri 27-Oct-17 21:08:15

We usually do a quick history at the start of each thread so please feel free to add yours, or not if you'd rather not!

Stage III bowel cancer and FAP diagnosis following colonoscopy in October 2012. Treatment was surgery (pan-proctocolectomy with ileoanal pouch anastomosis) and six months of chemo (XELOX). Stage IV diagnosis in April 2016 (mets in lungs and lymph nodes) so I am now having chemo (FOLFIRI and cetuximab). I recently had a permanent ileostomy to address issues from my original surgery. Latest scans show tumours are stable. On long term anticoagulants for very persistent pulmonary embolism.

nickyplustwo Fri 27-Oct-17 21:08:44

purple - I did tell the kids' schools and it was helpful for all of us. They were at primary school when I was first diagnosed, so we really needed them to be well looked after and understood, which they were. We also told a few of our kids' closest friends' parents, as we were worried that the children would be freaked out or ill-informed and wanted to help them prepare a bit better. As a bonus I got a pity pass into the staff car park, which was unexpectedly brilliant when I felt a bit chemo-feeble and also to hide from people if I was feeling unsociable or a bit conspicuous. I did also tell my children's form teachers and pastoral care people when I relapsed (now they're at secondary school); they didn't act on it as the kids didn't want any fuss, but they offered support, an open door and they said that an awareness of stuff going on at home is always helpful.
The sex booklet made me laugh at the time. I liked the idea of being somehow cytotoxic in the undercarriage ... as if I needed any extra help being undesirable! I also remember about 6 weeks after my radical hysterectomy, the surgeon asking if sex was ok. I laughed like a drain and said that from what I could remember, it wasn't bad ...

StilaOnTheWrongPlane Fri 27-Oct-17 21:09:06

Purple Im doing really well thanks , it was stage 4 when I was diagnosed ( sorry its totally my fault for not fully explaining) had op to remove as much as they could , then chemo and radiotherapy. I had NED (no evidence of active disease) in April last year and as I said doing well .

WhatWouldLeslieKnopeDo Fri 27-Oct-17 21:12:43

Sorry, I'm usually more organised, so this is a bit of a jumble of the "official" posts and me replying to new posts...

Thinking of chewing and her family flowers

Vampire waving back. How are you today?

Stila thanks. How are you at the moment? I hope the fucker is being kept under control

purple try not to panic. Side effects vary hugely between different regimes smile

TwitterQueen1 Fri 27-Oct-17 21:14:10

purple it's taking forever. It's only big one nail that's bugging me because it affects my walking.

The farting however, though massive, loud and prolonged, is much easier to live with grin, especially when you are single. Plus your bowel habits post-hysterectomy, are headline news to everyone. Be prepared for all and sundry to request updates many times a day.

StilaOnTheWrongPlane Fri 27-Oct-17 21:15:46

I've recommended it before. . . OPI avoplex oil for nails before and during chemo .

nickyplustwo Fri 27-Oct-17 21:16:30

Sorry, forgot the bio.
Diagnosed with Stage 4 ovarian cancer in Jan 2015 after presenting with abdominal ascites. No previous symptoms. Frontline Carbo/Taxol, 3 adjuvant sessions followed by radical hysterectomy which achieved complete macroscopic cytoreduction. 3 neo-adjuvant chemo sessions afterwards. NED August 2015. 19 cycles of Bevacuzimab to August 2016. Relapsed Xmas 2016 - deemed incurable but manageable. Started second line Gemcitabine/Carbo at New Year for 6 cycles. Relapsed August 2017. Now on weekly Taxol. I'm married with 12 yo b/g twins. Freelance when I can in ad/brand strategy. Happy to answer any qs if I can x

purpleunicorns Fri 27-Oct-17 21:17:44

Excellent news Stila flowers
I think I will end up telling the school Nicky even if they don’t get involved or do anything I think it would be helpful for them to know whats going on at home.

Right my story, although only a short one as this is all pretty new to me:

I got sent for a punch biopsy last Wednesday as I’d had a period that had gone on for 2 month and when the doctor went to do swabs she thought I had cervical erosion, got a phone call yesterday asking me to in today and I was told I have cervical cancer. Just waiting on an MRI scan which should be in the next 2 weeks

nickyplustwo Fri 27-Oct-17 21:19:28

We'd all had hysterectomies on my ward - the farting was insane! Most of the women were older than me and absolutely mortified! We had to all agree that we should fart with impunity and we would all give due respect to the loudest.

StilaOnTheWrongPlane Fri 27-Oct-17 21:21:05

Leslie yes well under control! Next scan in Jan , Oncologist in February then all being well (and currently no reason to doubt it will be) discharged from oncology . Further check ups will then be with the gynae surgeon who did my op.

TwitterQueen1 Fri 27-Oct-17 21:22:20

Ref losing your hair (which I have, but not everyone does), IME it's OK - really, it is. A bit nippy round the back of the neck now and then, but it does grow back again pretty quickly. Because I had a chemo break for surgery I lost my hair, then it grew back and now it's going again before it comes back... It makes showering so much quicker!

WhatWouldLeslieKnopeDo Fri 27-Oct-17 21:24:29

That's excellent Stila, sorry I got in a total muddle when you said stage IV and thought it must be recent, then missed your other post blush chemo brain today!

StilaOnTheWrongPlane Fri 27-Oct-17 21:28:48

Lol . . . Totally my fault for the shoddy explanation grin

VampireImNot Fri 27-Oct-17 21:37:39

Leslie thanks for asking!

I’ve had a good day. The new drug (imatinib) has been prescribed, and I start taking it tomorrow. The first chemo drug has done its stuff and whacked the white blood cell count back to within spitting distance of normal. So that’s all good news.

I can expect 4 weeks on this drug (with weekly blood tests) and if that all looks good a second bone marrow aspiration to see if it really has halted the abnormal production of blood cells.

I really need to get on well with this drug!!

pepperrabbit Fri 27-Oct-17 21:38:59

Evening all, been busy on here again! Sorry you find yourself here purple hopefully the scans and a plan will give you a better idea of what to expect.
I was diagnosed with Stage 2 lobular breast cancer in Feb 16 (at 46), had surgery, chemo (as it had spread to my lymph nodes) then rads, that all finished August 16, now on letrozole after a brief flirtation with tamoxifen. Also have 6 monthly zoledronic acid and take anti anxiety tablets - feel much better actually "in myself" than I have done for years if I'm honest.
I have intermittent cording from the sentinel node biopsy and my right arm is currently very painful - not helped by falling arse over tit this afternoon blush on a walk out with the kids!

mrsrhodgilbert Fri 27-Oct-17 22:37:31

Hi Leslie and thanks for the new thread yet again.
I'm 53 and was diagnosed in 2014 with ER+ breast cancer. I had a WLE followed by rads and tamoxifen. I've recently switched to anastrozole which I'm hating.

My recent post menopausal bleeding is set to remain a mystery to me as I called the gynaecology dept today and I don't have a follow up appt after my hysteroscopy until early December. Hopefully that means nothing dreadful is going on but it's pretty shit. I'll be calling my nurse on Monday to get her to look at the report.

I informed my daughters school, she was 17 at the time and they were great. Didn't make a fuss but she knew they were looking out for her and who she could talk to which she did occasionally.

WhatWouldLeslieKnopeDo Fri 27-Oct-17 22:40:05

Vampire I am glad the first drug has done its job and my fingers are firmly crossed for the new one flowers I hope the side effects are minimal

pepper it seems like only a few months ago that you joined, though probably not to you!

Sorry I usually do a recap of any posters who went quiet during the previous thread but I'm too frazzled for that tonight. I hope you're all
OK flowers and waving to any lurkers too.

I'm rather achy from sitting all day yesterday so will baste myself liberally with Tiger Balm before bed.

WhatWouldLeslieKnopeDo Fri 27-Oct-17 22:41:20

mrsrhod that's ages, especially when they've broached the possibility of surgery! I hope your nurse is helpful flowers

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