Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

[Brassica]

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

Oh gosh, poor us, we are all a bit rubbish atm, aren't we? (Apart from meercat whom I'm now picturing as a chic black feline in a beret).
Looking at the letter again, there's several bits in it that I'm going to ask the consultant to explain on Wednesday. But although I think they are not good news, actually I don't feel too worried now, it's gone back to "this can't be real". The surgery seems a long way in the past, thanks for asking about it, Brassica.
Skap sorry you have had a scary letter, honestly I think my worst moments have been the unexpected summonses to clinics and appointments. It really does throw you into panic. And then usually isn't anything to worry about. Hope this will be the case for you. Here's my ✋ if you want to hold it.
Brassica feeling crap after treatment is crap, even if you more or less expect it, and delayed treatment too, you just want to crack on and get it over with, don't you? And when you can't even enjoy food . . buggery bollocks.

WTF hope your poor insides have calmed down, did you actually get a doctor come to your house?? And ellenora sorry you have more fluid building up, it will stop eventually .
Warm thoughts to everyone on here, apols to those I've not mentioned. Thinking of TQ always.

Hello lovely people.

I haven’t been around for a while as I have been avoiding all stuff cancer. My best friend, who has been an absolute rock to me, was also diagnosed with BC in July. The day before her birthday. I was with her at the hospital and I felt like a prefect giving a junior kid an induction to a school that no one wants to go to.

I told her about this thread but don’t think she has posted

I noticed some comments above about the cold cap. I don’t want to bore on about it but I am really glad I did it. I am happy to answer questions or give tips if that would be helpful to anyone. I only had four cycles of EC chemo before they switched me to endocrine therapy and I would have been mightily pissed at losing my hair for just four cycles. I think I was one of the lucky ones with the cap. It was utterly shit and painful but I kept about 70% of my hair.

Hope everyone is ok. Sorry to see so many new names here.

Sending loads of love to all xxx

Still pooing....though not guide as bad as yesterday.
Does this end as side effects subside? Please say yes someone!

WTF. Sorry about the dire rear. Congratulations though on getting to the half way point. From now on you will always have fewer sessions to do than you have already done. Daft I know but counting down helped me

Bridget I can understand why the letter hit you both hard. There is something about seeing it in cold hard print in formal language that is quite chilling.

I had a smile at your image of the chic feline in a black beret. Sadly nothing could be further from the truth. I totally under estimated the impact of going away the day after a Herceptin treatment and completely over estimated my stamina. I really enjoyed the trip but am now absolutely wiped out. Also, two weeks after the end of radiotherapy my skin has reacted to the last three booster sessions and is now sore and itchy. Aloe Vera seems to calm it down but travelling with the seat belt just where I didn't need it to be didn't help.

I hope everyone is having an enjoyable weekend

Oh, meercat, sorry the trip was so exhausting, but when you are over the fatigue, you will still have the good memories. Hope the horrible itchiness clears up soon.
LondonHuffyPuffy sympathy to your friend, hope she does come to this thread.

Hi everyone

I’ve lurked on here for years and never thought I would have to post on this thread.

A good friend of mine was diagnosed with terminal melanoma 4 months ago from an unchecked mole and given 4 months to live.
She wanted to share her story and so I became her agent and got her on TV and front page newspapers and magazines and got her a letter from Theresa May simply so she could raise awareness.
She’s fighting like mad. She’s 38 and has 2 boys. Dreadful and sad.

Anyhoo, dh said to me last week Do you think you should get that mole checked after all the stuff you have been doing for your friend?

Long story short......

I’m on the skin cancer pathway myself now.

Dr has referred me immediately so an appointment should come through next week.

😰😰😰

Goodness bumbags, sorry firstly to hear about your poor friend and I hope she is well supported as she goes through this. Also sorry to hear you are facing treatment- your referral is from your GP I take it or do you already have a specialist diagnosis? If the GP has referred you is it possible that it’s not cancer?

Meercat I can relate to the sense of exhaustion, it is really easy to overdo it on spending energy, especially when it’s something like sitting in a car or even just chatting with loved ones which you’d never normally consider tiring. Rules are quite different with cancer aren’t they. I’m sure the net effect of going away will be positive though once you get some rest and can soothe your skin again .

Sorry you’re still going through it bum-wise, WTF. It really should settle down in my experience- I have had a couple of cycles where I had 2-3 days disrupted but Imodium was all I needed to get on top of it. If you’re finding Imodium doesn’t touch it or you’re feeling weak, going multiple times etc then do call your nurse. Have you managed to eat and is it possible there’s something setting you off in the food? I found tomatoes a bit risky from that point of view. Hope it eases now.

I’m awake with pain in my pelvis and legs, and finding it very hard to find a comfy position. I wonder if this is a belated reaction to the WBC booster injections.

Got an oncologist appt tomorrow (today) and meeting with rads specialist too, which I am too tired to get to on public transport so DH will drive us, thank goodness. I’m going to ask for bloods to be done too so if Tuesday’s chemo can’t go ahead at least we won’t waste time going in and being turned back. I feel so tired. It’s like a return to the EC days, not something to welcome.

Morning all!
My stomach is so sore it feels as if it's been kicked by a horse! But on the plus side, I'm definitely not bloated any more!
Seriously, the dire rear has been grim, and still not gone away, but I'm on day 8 of my cycle now, last immunity boosting injection tonight, and then I'm done with meds til next time and hoping I'll pick up generally. Imodium is helping a bit and I've got a friend coming over later with eggs, bananas and white bread as my usual food is full of fibre!
Thanks for sympathy and helpful comments all xx
brassica hope your appointments go well today, and that you get some energy back. You too meercat.....must have been lovely to to get away even if you have had to pay for it in low energy levels. I've booked a couple of nights away at the coast over the bank hols weekend with my fella, so hoping I'll be at my best by then and able to enjoy it.
bridget i did get a gp visit on Saturday. I rang the chemo helpline as per the guidance cos of my stomach issue and they said to ring 111 and say I needed a home visit. I felt that was over the top but they were absolutely insistent on it, I think because I was about to become neutropenic and they needed to be sure I wasn't becoming ill. Anyway i had various phone contacrs from different people checking me out and advising me where i was in the queue to be seen, and then a lovely gp turned up, took my temp and BP, felt my tum and pronounced that I was fine. Then yesterday afternoon I got a call from the helpline staff to check I was ok. It was an absolutely gold standard service. Everyone was so lovely and it makes me immensely proud and grateful for our wonderful NHS. I've worked in the NHS for many years and know about it's weaknesses but really, we are so very lucky to have it.
bumbags sorry to hear about your friend and your current situation. Fingers crossed it turns out to be nothing serious.

Brassica There seem to be quite a few of the treatments that cause leg/back/other aches and pains. For me it was usually fairly low grade pain but a bit relentless and made it impossible to find a comfortable position. Hopefully it will not last too long for you.

WTF It is great to hear that you had such good support. `You are right, it is all too easy to pick holes in the NHS especially now when it is so under resourced but when you really need it the NHS demostrates again and again why it is so invaluable.

Bumbags. I hope you referral goes really well and that you find out that you have nothing at all to worry about.

Feeling much better today after a good sleep. Brassica you are absolutely right. There are no rules about how our bodies react after cancer/treatments especially with regard to fatigue. Sometimes I can cope with all sorts and end up no more than usually tired, other times, like this trip when all I had to do was sit in a car and be driven around, I can be wiped out. It was worth it though

Thinking of everyone who has appointments, tests, treatments this week and hoping that it all goes as well as it possibly can.

I think the skin cancer pathway just freaked me out but potentially not skin cancer I suppose.

Thanks for the messages 🙂

Hi @Bumbags, just popping on to say hi. I had a malignant melanoma removed earlier this year, staged at 2c (but mine was on my vulva, so definitely not sun damage related!). It’s been removed and I’m now just being monitored (I had 3 cycles of adjuvant immunotherapy but it gave me liver problems)

You probably know an urgent referral is standard practice for a GP if the mole is even slightly questionable - the general health topic is full of threads worrying about urgent mole referrals - but that doesn’t make the waiting any easier, particularly given what your friend has been through. Hope you get a date for your appointment soon x

My chemo today got cancelled so I’ve got a week to recover some energy. In fact my bloods yesterday were inexplicably ok but because of my fatigue they decided to let me off this week.

In disappointing news, the radio guy yesterday told me how long all this is going to pan out for. I had been expecting final rads to be done in November but it turns out that it’ll probably be Christmas or even after before I’m done. I had just started thinking maybe we could sneak in a holiday somewhere warm before Xmas... With school terms etc it’ll be February before we can go anywhere with the children and to be quite honest with you I’m fucked off with how this whole year has been hoovered up by being a fucking patient. I won’t go on, I know it’s boring and self-indulgent, but I am ready for a change of activity.

Sorry for the me me me post though.

No need to apologise here Brassica Isn't that what this thread is for, at least in part. To let off steam when it all gets more rubbish than usual.

I can understand why you are fed up with such a long period of rads treatment though. Especially when you had already been half planning for afterwards. It isn't only the treatment either, it is the appointments, tests etc. Just seems never ending.

Oh brassica no need for apology at all.....that's disappointing for you. Its such a flippin marathon all this....and so hard.

One foot in front of the other and keep on keeping on..

Brassica isn't that what this thread is for? Grumble away. Would it be feasible to book something for February? It would be something to really look forward to even if it's a long way off?

Oh Brassica huge hugs sent your way x x x

Hi I was diagnosed in the spring with stage 2 breast cancer. It was caught early, but it's turned my whole year upside down. It was such a shock. I'm still off work and waiting for radiotherapy. Sending lots of love to you all

Cuppa. Welcome but sorry to see you here if you are what I mean. I know exactly what you mean about having your year turned upside down. Once treatment starts it feels as if you are making some progress but that takes over your life too

Have you got a date for your radiotherapy to start or are you waiting to hear.

Know what I mean!!!

Aw Brassica that's really hard, finding out that you're going to be tied up with treatment so much longer. You get sick of being a patient patient! Hope when you finally get away it will be delightful.
Greetings and commiserations to cuppa, you will get great support here, hope you have plenty IRL too.
Am on phone and will lose this if I go back to previous pages, so am waving at everyone else and hope aches, pains and general fatigue improve soon. I'm on my way to chemo appointment with a list of questions, on my own this time like a grown up!

Thanks everyone. I feel a bit less grumpy today. I’m such a planner that I can’t really help myself mapping out dates and so on, even though I know there are lots of variables that can change. So when my attempt to foresee the end of this gets shifted backwards I need to readjust a bit. I daren’t book anything at the moment holiday-wise given that things can still change, but maybe in a few months we’ll feel able to pick a date with some certainty.

I’m feeling a bit more like eating today as well so we have earmarked a trip to the chippy later for fish & chips and curry sauce. If that doesn’t cheer me up nothing will!

How’s your bum WTF?

brassica pleased to hear you've got your head around things and are feeling a bit better. Chippy tea sounds great!

I thought I was doing better today after one loo trip this morning, but have just had to go again and there was no hanging around! Appetite is shot to pieces as well. I think I will ring the helpline again tomorrow or Friday if it doesn't settle. Maybe there's something more than the Imodium that they can give me.
I think Its the perjeta causing it. The reading I've done says that dire rear is a common side effect, more common on the first treatment (tick) and when combined with chemo (tick) so maybe it'll be better next time and when the taxotere finishes in October. I sincerely hope so cos I think I'm supposed to be on it into next year. As it is I don't think I can risk leaving the house!
A bit fed up really.
Hope everyone else is ok. I know my bum problems are minor in the bigger scheme of things

I don’t blame you, there is little that is less enjoyable than constant dire rear and feeling anxious about leaving the house with it doesn’t help. If you’re still suffering after this long I wouldn’t wait to call, you don’t get prizes for stoicism and they may well have something that’ll sort it out.

Quite agree with Brassica that you should push for more help to stop the dire rear WTF, it's not doing you any good to have no appetite, apart from the horrors of uncontrollable loo trips. Much sympathy to you.
Glad to report that my oncologist appointment was fine, she said the scary phrases in the latest letter didn't mean anything worse than I already knew. Had blood tests and hoping to go ahead with chemo #3 on Friday.