Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

@TopOfTheCliff I hope today went ok. Presumably you have to wait for scan results? I should get mine a week tomorrow, so we can hold hands. Good to hear you are feeling better, 20 mile bike ride is impressive!

@Minxmumma that is awful news for you, I am so sorry. All I can say is, you have all my sympathy and good wishes for treatment.

Minxmumma that does sound uncommonly cruel for you to be dealing with yet more cancer while you DM is so poorly. This may be a time you have to put your own needs first, whatever they are.

Bridget the CT scan was actually hilarious and I enjoyed it to my surprise. I had a great radiographer who made me laugh and the whole thing was a cross between a trip in a space ship in the hospital car park and a bad Spanish disco with lights and a voice saying “put your hands up” and “ take a breath in and hold it”. I quite forgot to worry about the results. I shall file it under pending and not think about it for now.
While I was out at the hospital someone brought round a huge Victoria sponge cake so today was definitely a good day.
Channeling Chumbawumba today “You knock me down I get right up again! “

Gosh @Minxmumma that is shit, no way to sugar coat it. Was it a single mastectomy last year and the new tumor is in the other breast? I was diagnosed with Stage 3 Inflammatory BC last year which is different as it is fast growing so always at least Stage 3 at diagnosis. I had Chemo, double Mx at my request and Radiotherapy. All good now. Have the doctors spoken to you about why you are so prone to recurrence? Hope you get a plan in place soon x

Hope everyone is ok.

It's stem cell harvest day today. Don't think I've got enough to do it one day. I am still absolutely fascinated by the science of it all.

Fatigue and lightheartedness is still a massive thing. Bloods were average so not sure why I haven't started to feel better yet

I'm getting through today with Michelle Obama's podcast and watching Caitlin Mioran's How To Build A Girl

Well I have had it confirmed I’m triple positive and am at a new hospital for the the next onslaught (referred by my lovely surgeon). I am having a port fitted next week with first round of chemo due to start on the 16th - assuming all tests are ok. I was feeling positive as it’s a five year treatment plan but now I don’t know! It’s only just over 3 weeks ago I had the double mastectomy and auxiliary node clearance - need a bit of a kick to get back in the groove - but bloody hell it seems it’s a bit shit for a few of us at the moment!

@InOtterNews hope the harvesting went okay today. Do you have to stay in hospital now? Sorry, I can't remember the details of the process.
@ElaineMarieBenes good luck with the next steps in the treatment plan. Thinking of it lasting five years is a bit daunting, no?
Adding, I'm afraid, to the shit shower, I got a call from the hospital to confirm that I'll go there for my appointment next week, i.e. to get scan results. And, she added, if you get a letter in the meantime offering a telephone appointment, please ignore it. So that indicates pretty definitely that there's something wrong. I can hardly believe it, only just over nine months since I finished chemo.

Good morning all. Sorry to hear that everyone is going through such difficult times at the minute. It all seems so unfair!

After isolating all week in prep for Monday's procedure just got phone call to cancel. And consultant will be on holiday until Sept so they couldn't give me new date. I'm totally deflated now as I hoped that things would be moving on. In one hand I'm thinking they must not see me as priority on the other I'm thinking about what 5 month delay could mean. Total head fuckery!! 🤬

@Bloodybridget I had to come back today as they didn't get enough yesterday.

But I've sat been sat here sobbing for the last hour. I've got my transplant date through. I'm being admitted in 2 weeks time. The kicker is full isolation and zero visitors for the month I'm in here. Up until now the whole Covid thing hasn't affected me greatly - I managed visitors in the garden at home or through my hospital window - but the thought of not seeing a face/ holding a hand has left me devastated for the first time.

@InOtterNews No visitors for a month sounds beyond grim. I can't offer anything but sympathy I'm afraid. Can you at least Skype/zoom/
FaceTime?

@Bloodybridget Will be keeping everything crossed for you.

@InOtterNews a month in hospital without visits sounds awful we're all here for you when you need us💐
@gillmoregirl this may have been suggested to you, have you tried complaining through PALS they do seem to messing you about all these delays can't be good for your emotional health.

@gillmoregirl that is utterly crap, I'm so sorry. Agree with Liz that you would be quite justified in complaining.
@InOtterNews my heart is aching for you! Of course the prospect of being in hospital for a long stay with no visitors is horrible. Nothing I can say will make any difference, sadly, but just saying you have all my sympathy.

@SnowsInWater thank you. I will update afterwards.

Apologies to all of you as it seems I just vented and ran for the hills! I’ll read the pages I have missed after I write this. I just feel so guilty for not checking in after all the support I have got!

I started chemo on Thursday, epirubicin, and boy, was I feeling rough afterwards! I have only started to resemble some sort of human being this morning. Sickness has been the worst, on a scale I have never experienced before! I may even have a proper shower today and do something other than hugging the toilet bowl.

I have quite a tough time mentally, thinking how on earth am I going to last having this shit (3 more epirubicin, followed by 3 cycles of something else I cannot pronounce) until 12 November???? Rational part of my brain says it’s absolutely the right thing to do, the toilet hugging part of my brain says it completely understands people who refuse chemo and go for something else. The trouble is that if THAT something else worked, there would be no need for chemo.

I also have disgusting sachets to drink for constipation (all this anti sickness medicine I am on) and I cannot do it, it tasted revolting and just prolongs toilet hugging. I need to ask them if I can take Senna or anything else that is a tablet rather than vile artificially tasting liquid.

@Piggles39 good luck with the surgery today! I hope you manage to go home pretty soon after that.

@Thymeout yes, yes to absolutely hating morphine! I also gave me massive hallucinations and totally messed with my head. I begged them to take me off it and give me alternatives (some sort of morphine-based tablets that weren’t nearly so bad). Never again! I can’t understand how people willingly inject this stuff into themselves (drug addicts), it made me feel anything but good or even high. It just made me feel like I was going to lose my mind, especially after the toilet sign on the door morphed into a landlord whose flat I rented at uni 29 years ago!

Oh @balkanscot poor you, I am so sorry about all the sickness. It was one of the worst things for me last year. I was prescribed Movicol for for constipation but absolutely refused to take it, much to my DP's dismay. I took senna tablets a lot, and had prunes with my breakfast cereal most days, that really helped.

Please don't ever feel guilty for not checking in here. We all bring what we can and what we need to, when we can. There are times we can offer support, and times when we need to keep away, or just ask for help for ourselves.

@Minxmumma I feel exactly the same at the moment! It’s my second brush with breast cancer, 3.5 years after being diagnosed initially. I went through lumpectomy, double mastectomy with DIEP reconstruction (a big blooming 12 hour op), and ovaries removal. All in the name of prevention (I am BRCA2 positive). I was just SO angry that it has happened AGAIN! And it’s a larger lump, hence why I am having chemo now before
surgery. And it’s still breast cancer even though I don’t have any breasts anymore, it’s in my lymph nodes (same side as original lump). However, it’s the same type, ER positive, PR and HER2 negative, stage 2. The oncologist told me it has probably been growing for “some time” and there was no way of spotting it earlier.

Thinking of you and a big hug!

Getting distracted by an 8-year old DS, will be back.

@balkanscot I’m sorry to hear how bad the chemo is - I’ve just had it confirmed my heart is ok and so I‘ll start my first course (of AC) next week - so no doubt will join you hugging the toilet bowl. My BRCA test results still awaited!

💐 to everyone

Fuck, fuck, fuck, fuck, fuck!

Last week I went for my routine age-related mammogram (due April, rebooking just reopened)

This morning got a letter calling me to breast clinic because there’s d sad one thing they need a closer look at - appointment next week. Yes, I’ve been through breast clinic before (benign cyst), yes I know the odds are overwhelmingly that it’ll be something and nothing. Yes I know not many people are unlucky enough to have two different cancers at the same time.

But right now, I’m feeling all over the place. I thought I’d got a lot better at dealing with uncertainly since the first (leukaemia) diagnosis back in 2017.

Right now I don’t think I can cope with anything. But will have to tell DC, as I don’t think I can hide the appointment from the little blighters

I want to get plastered (figuratively - the broken foot is not so long out of the fracture boot and I don’t fancy more immobilisation) but it’s so hot I know the hangover will be beyond excessively evil,

I just feel a bit numb

@balkanscot hope you are improving a little. Did you get the fancy new expensive anti sickness drug Emend? I think it costs about £30 a pill for three days but it worked for me with Ondansetron and domperidone. Worth asking next time!
You made me laugh out loud about movicol. I have been prescribing it for years but never tasted it until Round One chemo when guts stopped working. It is utterly vile! I have been inflicting this stuff on patients and nobody ever complained to me.
I would rather drink castor oil I think. Ugh!

I seized the day today and went sailing on the river as it is Round 2 FEC on Tuesday and back to the chaise longue again.

Happy weekend folks

Hello to everyone.

Have just been catching up, and was about to the say the same as you @TopOfTheCliff about movicol - I have spent years telling people what a brilliant laxative it is, having never had to take it, and it is VILE! Plenty of alternatives @balkanscot, although you can mix with juice (or even make it up with jelly) if you have to have that one. And sorry to hear your chemo is making you feel so rough. I hope it continues to ease off today.

@gillmoregirl I really really think you need to be complaining too. The waiting must be so stressful, and you need answers and a plan. Surely one of the other colorectal surgeons could do the scope, even if they don't do the eventual surgery?? I would be getting your GP to write / ring and expedite it.

And poor you, @InOtterNews. I had to go into hospital with very short notice, and grabbed a children's book which I had been meaning to read, which was ideal really - not too taxing, and really gripping. Not sure what else to suggest. My children sent me postcards which was lovely, and I wished I had some myself, and some stamps, to write back.

I've been doing ok. Chemo fine so far, and the mini rice puddings was a really useful suggestion @Thymeout! I had a bit of a meltdown earlier in the week, probably because DH took the children away for a few days and all of a sudden I had far too much free time and peace, and therefore far too much time to google and think. Thankfully they are back, and it's bedlam again!

Thanks everyone. The colorectal consultant secretary said an emergency had arise so hard to argue with that. Then he's off for two weeks. She promised I'd be seen at start of sept and that he was planning to schedule surgery soon after. Prob is he's the only one who can do tams surgery here and he wants to see lesion for himself to check I'm suitable. I really don't want to complain as don't want to get his back up. If I don't hear anything within first two weeks of sept I will make more noise.

Re. Movicol. I found chilling it really well and using a straw helped me get it down. Just about. 🤢

Sorry I haven't named checked but sending everyone love and best wishes. 💕

Posted too soon. Just wanted to say thank you all for support when many are going through a much more difficult time at the moment. You are all amazing.

''Of all the liars in the world, sometimes the worst are your own fears''.