Cancer support thread #73 - come in, we're here for you.

[Trumpton]

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 smile

Hello all (sits in v comfortable fireside armchair in the Patience). Just been catching up with posts.
@Zorgothslugofdoom poor you, you are having a hard time with dire rear, sore mouth and odd tasting food. I got utterly fed up with food issues while I was having chemo, it just felt so miserable. Are you pleased with your wig?
@Trumpton yay for ceilidhs, how brilliant (and unusual) for an appointment to be moved to a time that actually suits you better!
@Toofaroutallmylife that's really good re liver function, and I do hope side effects from the suggested new treatment aren't too bad for you.
@meercat23 I've had trigger finger but it took care of itself eventually, and yours sounds more extreme if it actually hurts, what bad luck. Hope you don't need surgery for it in the end.
@Stinkyeddie blimey, I can't believe how long you've been waiting already to get your eye looked at properly. I'd definitely go private in your situation.
@Hippiechick162 sorry about the haemorrhage and painful dressing!
@Nonotmenori ah, so sorry you did get a cancer diagnosis. How are you doing now? Do you expect to stay in hospital overnight next week?
@CointreauVersial much sympathy re bowel issues, was it Movicol you were given? I do recommend prunes!
Waving at everyone else including @NaomiFromMilkShake and @Skap, and anyone I've missed.

I have come on the check in read all the posts and promptly forgotten everyone! Maybe I should try using laptop so I can see more posts per page and just need to scroll up.
Sorry to hear lots of you are suffering.
And hi to the new people who have joined since I last posted, sorry you find yourselves among us.

Anyone for any tips for constipation? It’s not bad yet but don’t want it to get there.
I’m already in two sachets of a laxative drink a day just in general. Am not allowed any fruit of vegetables (basically can’t touch anything healthy). Should I just up my laxative drink? Can’t really think of anything else that I’m allowed to have.

Hi @Sqiffy01 figs, lentils, chick peas, chilies all work for me. Can you have any of those?

Black coffee and a fag is meant to get the vowels moving nicely. As is visiting a musty library.

Possibly not the wisest approach, nor the easiest to arrange though!

vowels - good grief - it sounds like I’m talking about Countdown, not constipation!

(I was going to add something about slippery fingers, but suspect that’s Not Appropriate - even though of course I mean only on the screen)

bloodybridget - I really love my wig! I decided not to "play it safe" and got a silver/grey one, cut into a chin length bob. It's totally different to anything I thought I would pick, as I've always had long hair. Just need to feel well enough to take it out for a test drive!

@rumred nope none .

@Bloodybridget - they gave me something called Normacol. Seems to have...solidified things a little. Feeling really weary tonight, but I had a bad night last night - couldn't sleep for fretting about the cancer. Daft, really, as I'm in a pretty good place healthwise, and was mostly fretting about things that have already happened.

As regards constipation, has anyone suggested glycerin suppositories? Horrid thought I know, but TMI WARNING I resorted to this after my op last year. After a week of sennakot and lactulose I gave in to the nurses suggestion - 5 minutes later my world exploded, including a completely whole suppository. My nurse thought this was hilarious: “ If I’d known, I’d just have tickled your arse!”

Anyway, good night all XX

zorgo yes my taste buds were all over the place and I had sore mouth/mouth ulcers too. Incredible how something so small can be ao flippin painful. I found difflam mouth wash and Iglu gel both good for the sore mouth.
In the end I couldn't tolerate anything with any texture at all in my mouth, not even porridge, not because it hurt but just that it felt disgusting! Can't describe it any other way. Hence the custard and tomato soup. I did lose all the weight I had put on with FEC though so a small bonus.
I think my digestive system took a battering all the way from mouth to exit! I was on regular omeprazole too for heartburn, 2 a day for the 1st week, then 1 a day until it felt better. That definitely helped.
It was a tough time and I'd really had enough by cycle 7 but I got through it and so will you.
Your wig sounds fab. I had a blonde bob which was identical to my usual style. I've got a very short afro at the moment....a headful of curls! Can't really remember what I looked like with chin length straight hair.

Stage 3a colon cancer, diagnosed last January aged 30. Successful surgery, clear margins, positive lymph nodes. Had chemo. Not genetic, just unlucky/lucky. Currently no evidence of disease. Currently disabled. I'm 1 day away from my 1 year survival. My friend and next door neighbour wasn't so lucky, he died of the same cancer 3 weeks before I was diagnosed, he was in his 40s.

It's reassuring to read that some other people felt nothing when they were diagnosed. The first time I felt anything was when I finished chemo, I was scared of leaving my wife and kids with no husband and father.

Has anyone else encountered people who don't think that you've been ill? I have encountered people who have asked how my brother is recovering not realising that it's me they're mortified when I explain to them he's fine, and that he never had cancer . I've also had people accuse me of faking my symptoms and faking cancer. I don't know how to deal with people like that. My defense mechanism is to explain what I've been through and when that fails I cut them out of my life. Not sure it's the right thing to do but it keeps me sane.

I'm going to keep reading through your posts, this thread is really helping me. I hope I can help some of you too.

Well done on your recovery so far DinosaurMayonnaise. It sounds like you've been through a lot. Leaving behind loved ones is one of my greatest fears also.

As for people not believing you....wtaf??! How can someone even contemplate as a possibility that you might be faking cancer?! I've never faced that thankfully. Apart from anything else the physical effects of chemo were pretty evident and looking like a 'cancer victim' was one of the worst things about the whole experience for me. I think those people would cease to be a part of life pronto. Dealing with this dreadful illness is hard enough without having to put up with that kind of madness

@DinosaurMayonnaise we have a similar diagnosis. I’m on second round of chemo currently. I also don’t have a lot of feelings on the matter I fact my therapist was saying last night he is surprised at how calm I am about it all.

I think it is outrageous about people not believing you! Who the hell fakes cancer???
I think you are doing exactly the right thing cutting people out of your life!

@DinosaurMayonnaise&WTF
I did, but refused Chemo due to too old and decrepid and under pressure from DD agreed to Radiotherapy, which gave me horrible after effects for several months.
While undergoing rads a woman kept repeating" But you look so fit". I had just been on the radiotherapy bed and said "Well, I must be glowing with radiation" .
Dino You are very young to get bowel cancer but lucky that it was caught in the early stages.
When I was diagnosed with Bladder cancer I was angry and the anger increased when the 1st early stage diagnosis changed 6 weerks later to muscle invasive as even GP thought I looked too fit to have bladder cancer in the first place and tests were delayed.
Good luck

@DinosaurMayonnaise seriously?! How can people say such things? Hope things stay positive for you. Good luck with your ongoing stuff. My cancer nurse said that people will show who they really are and it means you can conserve your energy for those that matter. Never a truer word spoken!

@zorgothslugofdoom the wig sounds awesome! Go you. My 5 year old is planning a different colour wig for different days for me...apparently I can wear a pink one when I go to ballet with her. Love the innocence of the things she says to me.

Got my treatment plan today at 12. All I know is chemo and surgery. Ready for knowing now.
Hope everyone is doing ok and you have a lovely weekend despite all the glamorous side effects xx

@DinosaurMayonnaise How are you feeling about the anniversary? I think it’s quite common for it to stir up a lot of emotions that we manage to sit on for most of the time. I found Christmas / New Year quite hard, as that time last year I was waiting for my diagnosis. I actually had a follow-up op on the anniversary of my diagnosis, which took my mind off things!

DinosaurMayonnaise - how extraordinary that someone could accuse you of faking? Anyway, how are cancer patients "supposed" to look? I don't know if any of you follow BowelBabe on instagram, but she doesn't look like someone diagnosed with Stage 4 bowel cancer a couple of years ago.

I have to say, I didn't feel much when I was diagnosed, and haven't shed a tear yet, but then again, I was early stage and had no reason to suspect that surgery and rads wouldn't be a total cure (as the cancer very kindly grew in a redundant organ that could be removed in its entirety). I haven't (yet) had to confront my mortality, or deal with the debilitating, and often very visible, effects of chemo.

Hi everyone,

Sorry I've been in a weird place last few days. Yesterday went well they put that dye into my blood stream and took extra mammograms. I should get all results this Monday along with what they're going to do and given a cancer nurse. Guessing they're checking if it has spread or not. I am so glad I'm with Guys now. They really seem to be looking after me. Can anyone tell me what sort of contraceptive you can take if you're no longer taking the pill? Is the implant ok?

I've been pretending it's not happening so I've actually been ok until yesterday when I stupidly went down the pub and drank prosecco like it's running out. Then I cried in a drunk state asking why me to my partner. Not as if he can actually answer that.

My family are a little cross at me drinking. They want me to clean eat, no processed food and no alcohol. Stupid as it sounds, Alcohol is actually getting me through at the moment. Do I need to stop? Will it make the cancer worse? Sorry if these are stupid questions.

@Hippiechick162 Good luck today. Xx

@DinosaurMayonnaise that's truly shocking that anyone would even say that to you.

I guess we'll all find out our true friends soon enough. Take care of yourself x

@DinosaurMayonnaise I was diagnosed with thyroid cancer last year and have been treated successfully, although it is a cancer where you never get the “all clear”. Initially I didn’t feel anything and have just gone into a practical and very focused mode. I realised this week I haven’t cried or showed any emotion, which I don’t think is good. I got enough courage and phoned our local Maggie centre, after which I cried and cried. I am now going to visit them.
I didn’t tell many people I was ill, as my cancer is rare and the treatment not the standard chemotherapy and radiotherapy. I didn’t like to explain to everyone. I am fortunate my close friends have been brilliant.
I have found the last year mentally very tough. I think because I am back running and very active during the day, people think I am fine but don’t see the exhausted person going to bed at 9.30 every night.
It is shocking that people don’t believe you have been ill, every cancer patient is different just as we are all different human beings.

@Nonotmenori it's good that you have family around to support you. A far as alcohol is concerned I don't think it's banned at any stage during treatment although I was advised to avoid for 24 hours after chemo. Apart from that alcohol in moderation seems ok, it won't make your cancer worse. I can understand why you felt like getting drunk but perhaps overdoing it isn't a good idea.
There will always be people who tell you they know someone who ate this or that miracle food, or gave up eating certain foods. My advice is to listen to the professionals rather than friends or family when it comes to what you can and can't do. Your breast care nurse will help you with all your questions.
As to contraception, again ask the doctor. If your cancer is hormone positive I suspect you won't be allowed to use any hormonal contraceptive which includes the implant. Maybe a copper coil? I am sure they will give you advice.

@Hippiechick162 good luck with the appointment today. Love the idea of your five year old choosing the wigs.

@Nonotmenori

No questions are ever stupid questions.

I’m afraid I’m a “whatever gets you through” kind of girl.

I agree with Skap - put this in your list of questions for your nurse - then you can reply to well meaning / interfering (delete as appropriate!) family members “well my nurse says ...”

My immunotherapy gave me liver inflammation so I asked my nurse if that meant I couldn’t drink. Her reply was “ a couple of glasses are ok, you don’t need to make yourself miserable”. I’ve relied on that quite a lot

I work round the corner from Guys Cancer Centre (as they wheeled me into theatre I said “ooh look, I can see my office from here!”) so if you’d like to meet a random stranger for coffee at any time, DM me x

I asked my oncologist what I could do to maximise my chances of avoiding recurrence, in addition to taking all the poisonous drugs. His answer was regular exercise and maintain a normal weight. Nothing about alcohol, though I think it has been linked with breast cancer and the 'life after treatment' booklet I was given recommends no more than 5 units a week, which is stingy and frankly very disappointing!
menori I think you should just do what gets you through at the moment and not fret about it too much. Unlikely that a bit of overindulgence is going to make a fat lot of difference.
As for clean eating, I would have starved on chemo if I'd followed that principle.....see above references to tinned custard and soup. Family are coming from a well-intentioned place no doubt, but you have to do what's right for you.

Hi @Skap,

I think I remember the doctor mentioning something about it being hormone. I wasn't really taking it all in to be honest. They told to stop taking the pill and mentioned a coil which I'm not keen.

I'm not feeling great today re the drink last night so maybe I'll give it a rest for a while lol

I'll wait fir Monday to see what they'll say.

@Toofaroutallmylife that would be awesome. I'm field based so cover all of London so I'm always around there anyways. I've been seeing customers in between the hospital appointments.

@WTF99 I'll think I'll stave too you know lol I'm a terrible eater as it is.

I know my family mean well. It's mainly my older brother. He's panicking and tends to go a little crazy if anything bad happens. He's been sending me links online about what foods etc I should be eating..., one of these links is 4 hours long!! 😂 you just have to laugh don't you lol

Oh and thank you all for just being here and helping me an everyone else. Glad to be able to chat to others who are dealing with this to