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.

WTF99 Sorry your treatment was challenging. The nosy visitor sounds very irritating. Was it your visitor or someone with another patient? Even more annoying if they weren't with you.

Skap Like you I went to the first appointment expecting to be told it was nothing. It is a shock to hear them say that they think it is not nothing but in the end I was glad that they were open and straight with me. Waiting for the results is the very worst but once you know what is what and get a treatment plan it gets a bit easier to get your head around it all.

Hello everyone.
I was diagnosed with Colon cancer in February and had a Right hemicholectomy in March. All was good and my results showed I was in remission. However I asked to be tested for LYNCH SYNDROME and that has come back positive. My consultant wants to do an urgent colonoscopy even though they've never been able to do one as I also have severe diverticular disease. I'm back on the low residue diet and moviprep prior to my colonoscopy. My consultant is doing it using a paediatric scope.
I feel as if I've been pushed back on a roller coaster - In Sure you all appreciate that feeling.
Love the you all x x x

born i dont know anything about Lynch syndrome but I do know about the rollercoaster.....I hope the ride is very short.

meercat nosy neighbour was with the patient sitting next to me. NN: "How many more chemos have you got to go" ME: "A few.... err, mind your own business love "

skap that all sounds very treatable and is a road quite a few of us here, past and present, have travelled. Hope the wait for results isn't too horrible for you.

skap, very sorry to hear your news, hope if it is cancer it proves to be teeny weeny and easily chased off! Meanwhile you will get lots of support here. WTF so sorry you are suffering with bloody bowels. I struggle with drinking enough too. Andd that your treatment was so uncomfortable. MilesJupp my CNS isn't great, unfortunately, I called her and left a message after I'd been in hospital last time, over a week ago now, and she hasn't called back! Anyway am seeing oncologist tomorrow so will discuss it all with them.

Today I have felt very well, and very cheerful, I went shopping and bought some clothes that fit me.

Waving to everyone! I am finally home after 3 weeks and adjusting to a new baseline. I have a hospital bed downstairs, which is marvellous (after 1 night) and I don't get woken up at 5.30am every day. I'm finding the steroid induced diabetes difficult to cope with and have a hypo every morning when I'm supposed to drink lucozade (at 5.30?!) .

Wishing everyone well and hoping I may get a shower at the end of the week when social services will apparently come by. No idea how I will get upstairs let alone step into the bath. My steroid multi chins will continue for a couple of weeks but that's Ok; the leg pains are difficult to cope with though.

No side effects from the stereotactic radiotherapy thankfully, aside from a tiny bit of hair thinning which no-one will notice. love to all.

Lovely to see you back on here, TQ. Hope the diabetes can be better controlled (Lucozade early morning: yuck) and that your leg pains ease off too. Might Voltarol gel help? Also hope you get the shower!

Brilliant to see you back here TQ and to know you are back home.

Well thank goodness for that TQ. Leg pains are nasty: get the DDs to give 'em a rub.

Has anyone heard from Brassica? I PMed her a while back. Hope she's ok.

Just a flying visit

Hey redspook - does your treatment start tomorrow? Hope it goes ok

Glad you're back in the comfort of your own home TQ and that social services do a good job for you. Hugs x

Thanks toofar, yes it starts tomorrow. I have a bag packed with books, kindle (with downloaded box sets), headphones, mints and a nice new nail file and buffer. I'm apprehensive, but at the same time I want to make a start on dealing with this bastard.
Lovely to hear that you're home TQ, I've been thinking about you x

All the best for the start of treatment Redspooks. However horrible the treatment is it is always better when it has started because you can start to count down to when it is finished. There is so much waiting with this disease, waiting for tests, results, plans, treatment etc. It is a relief to be able to tick things off and move on.

Call off the search party Miles , I’m here! I didn’t get a PM though? I have been reading and keeping up, just been a little busy and not responding sorry. We went away for a few days at the weekend in between chemos and the children are off school so there has been a bit more activity in the house —preventing me from getting on here— than usual. Also, very sadly one of my team from work has just suffered a stillbirth at about 29 weeks. She had been in to visit me at my last chemo looking so well and happy, had found out it was a girl, and we were giving her horror stories of sleep deprivation and breast feeding etc and now so suddenly all that is changed. It’s so heartbreaking and that has taken up my mental preoccupation for a few days.

But to catch up with a few of you: redspook, best of British for you starting treatment today. How many cycles of chemo are you having, and do you know what kind? You have good stuff with you to prepare for it. Meercat is right in what she says about getting started and ticking it off. Hope your side effects are few and mild.

TQ another one I have been following - so pleased to hear you are home and you really sound much more like yourself. Are you suffering tremors still? What sort of paraphernalia have they sent you home with, and do you have any of your DDs in the house to assist? I don’t want to be insensitive so tell me to FO if you like but what do the doctors expect for you now in terms of recovery? Will the stereotactic zaps have improved things?

Doublethecuddles I only hear good things about what Macmillan do for people, give them a call and you can always decline if you don’t think you need what they offer at the moment. The treatment you’re having must be nerve wracking though so it must be helpful to get some more information on how people manage it.

Snows sorry you’re still feeling so wiped by the treatment. I understand this is quite normal but nonetheless must be frustrating when you assume you should get your life back now. Hope the holiday recharges the tanks a bit.

Beer hello and welcome. I hope the CT scan was ok yesterday (did you feel as if you’d wet yourself? When do you expect results from that? Hope it is a short wait and good news (as far as possible) when you get them. Keep chatting on here while you wait, and it doesn’t need to be about cancer, we like to get to know what else you get up to as well .

Hello to Skap as well. I’m a breast cancer patient. Had a similar experience at the breast clinic but my treatment starts with chemo, then op, then rads. If you avoid chemo that’s a bit of a win but it is all still doable if it comes to it. I think it’s probably a good thing they gave you a heads up that they were concerned, it does give you a little time to process things internally. Have you told your OH now? The breast cancer care website isn’t too scary if you do want to read up a little - I did at your stage because I just deal better with facts. But don’t google for survival rates or anything like that as there’s just too much individual variety of outcomes and old studies out there, it’s meaningless and unhelpful.

Born good luck for the ‘scope. Doesn’t sound like the greatest way to spend a morning. You’ll get sedation I presume?

Hope everyone else is ok and bowels are being well behaved all round!

Great to see you Brassica! So sorry to hear about your colleague; how terribly sad

I was worried the chemo was hitting you hard. The PM I mean was in response to the Facebook Group idea (when I was trying to find you).

Been for a run this morning and am now Too Hot.

Have a good day everyone

Lovely to see you back Brassica, so very sorry about your colleague.

Greetings to everyone else - good luck for today redspook and to all who are undergoing treatment/having tests/waiting for appointments or results.

A funny story from me - Virgin Trains kindly agreed to refund me for unused train tickets when I couldn't go to Scotland recently, also involved tx for DP and her son so quite a large sum. I explained carefully which tx were unused, and that one would be used, but they emailed to say they were refunding the whole amount, £399. So I replied and repeated it should only be £290 as one ticket would be used; OK they say, £290. Then they refunded £399, a few days ago; I thought I'd wait and see if they would adjust, logged into cc account again today and not only have they not adjusted, they have credited another £290 . . I tried phoning, answerphone says they are not taking calls atm, to email ... if nothing else happens I'm going to accept it as a gift from the universe (and put it towards a nice break at Christmas). Am normally v honest but!

Sadly no such thing as recovery or even treatment . Quality of life is the priority. I can walk around the house and I've just washed the dishes! Go me. I have a bed, a toilet thingy to raise the seat, a chair with vibrating bum cushion, and a peaceful house. 2 DDs currently at home (working and uni) so I am being well cared for.

Tremors not quite so bad as down to just 2 steroids a day. Was on the morphine syringe driver in hospital as family told i would die that night ha - fooled them .

Vibrating bum cushion !?!

The peaceful house must mean so much TQ, after everything you've been through. Great that you are being so well cared for.
Sorry to hear about your colleague brassica.
Bridget you are morally in the right to keep the money. Enjoy it.

I am back home with the first chemo and radio done and it was OK. I was calmer than I expected to be (I'd thought I might blub all over the nurses) and the day went quite quickly. I read and watched some downloaded stuff on the tablet, interrupted by trips to the loo. I had to pee into containers for it to be measured, and the nurses were impressed with the output (never thought I'd see the day when this would make me happy).
The radio was also OK and didn't take long, so I was at the hospital from 9am to 4.45. There's a 45 minute journey each way so it was quite a long day.
I feel fine at the moment but expect to feel quite shit tomorrow. I'll take the anti sickness medicines and try to ride it out.

I have 5x cisplatin and 25x radio, so I'm 20% done with the chemo today
Thanks to those who sent support, I really feel like you are with me.

redspook great, one fifth down! Hope you don't feel too rough tomorrow. TQ wishing you happy gentle pottering around at home, and here's to beautiful Cornwall. Keep on defying the odds.

I saw my oncologist today, good news that the CT scan I had the day after chemo showed everything looking good. And she is prescribing extra meds to try and reduce side effects next time.

Yesterday I had my first 3 month post treatment review (ovarian and endometrial primaries), scans were done last week.

I'd prepared for good news (pretty easy, involved me grinning and eating cake) and for bad news (stoic face, questions, go home and cry) but I hadn't prepared for "it should be fine, but we're not totally sure". The report wasn't back, my consultant is sick, so the scans were viewed visually by the registrar who said everything else looked clear but he saw a speck on my lung. He checked with a consultant who said it was probably fine and just from an old infection. But they can't be sure until they get this report. He said it should be with them in a few days and he'd ring if there's a problem.

I was slightly befuddled by this and didn't think to say I don't want to just wait for an unknown number to come up on my phone - or not. I've no idea who to ring if I haven't heard by Tuesday, say. One of the nurses, perhaps? I've never had to contact them for advice so I'm a bit lost, only the chemo "hotline" once.

FYI I still ate cake.

Bridget that's great news on the scan and hopefully the extra meds will help a lot.

Ignatius Uncertainty is the hardest of all to deal with. I hope they are able to give you some clarity very quickly

12/18 session of Radiotherapy done today. The sessions are really easy and no skin problems at all so far but the fatigue is something else! This afternoon I have Herceptin infusion. Not a problem in itself but I could do without having to go out again today.

I am supposed to be starting taking Anastrazole this week but I am putting it off until the end of next week when I will have finished radiotherapy. I am more worried about the Anastrazole than I was about the Radiotherapy. The list of possible side effects looks horrible and I know not everyone gets them and it is unlikely that you would get them all but hot flushes, hair thinning and weight gain would be a nightmare. I'll just have to hope that doesn't happen. I know it isn't logical but I cant help feeling that I have been lucky so far with the side effects of chemo and radiotherapy so it must be my turn for nasty effects!

That's good news bridget, hope the extra meds help.
Hi ignatius, it must be hellish to have to carry on with the uncertainty, it's exhausting.
I'm back from my second radio and am still feeling ok. Even if l nosedive later today l will count a good first 24 hours as a positive. Hope you continue to cope well with the side effects meercat

Ignatius I am really sorry about the uncertainty. Would it be possible to speak to your consultant's secretary and ask if they can at least let you know either way.

Uncertainty is always crap. Unfortunately there’s a lot of it around.

I had my 3 monthly review today, and am feeling in need of venting because the clinic was running an hour and a half late, an admin pint which should have been dealt with in January is still not resolved (letter promised, but they can take weeks) then another hour and a half wait in the pharmacy, only to be told to come back on Monday as they’d run out - not completely but I got only one box of the three I should have. Phoned DD wanting sympathy, and all she could say was ‘lol’

I feel better for getting all that out!

But the important point is that I’m fine! Bloods normal and functional remission continuing!!

Thanks for the empathy, it really does help.

Bloodybridget that's a good idea, thanks for suggesting. It seems my consultant is on long term sick leave now but I know the name of the one I'm being passed to so if I have no luck with the nurses I'll try that.

iVampire good news overall but muddied by the hoops you had to jump through! I've been waiting for results of Lynch Syndrome tests since January and still no sign of them, apparently. I was warned they'd take longer than the BRCA tests but I'm not convinced it's meant to take this long.

I was quite calm and measured during my treatment but since it's finished and I'm back at work, I seem to be less tolerant! I suspect it's to do with adjusting back to normal life - I can start thinking past the next treatment now and it's quite scary. I'm not in the slightest bit superstitious but yet it feels like tempting fate to let my guard down and relax.

Sorry for the long posts, I think the floodgates opened after yesterday.