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.

Brassica. I can certainly identify with finding other people a bit too much at times. Even people I love seeing if they stay too long. I think it is a combination of fatigue and chemo brain. Hard to keep focus. Yet another reasons I am in awe of the way my DH has supported me all through this. I would never have described him as being particularly aware of my needs or sensitive but since diagnosis he has seemed to be able to sense when I need to talk and when not.

Red. Ginger nuts were my salvation too when my sense of taste went during chemo. Ginger and spices were the only things I could taste and the ginger nuts were somehow comforting. As I wasnt much of anything else I didn't worry about the calories too much.

Snows. I am having the Herceptin every three weeks for a year but I started on it at the same time as the Taxol so I am now five treatment in with that and will continue with it until sometime next spring. I think the length of my treatments is relatively low. 9 weekly sessions of Taxol, 18 daily sessions of radiotherapy. The Herceptin, Anastrazole and Zolodronic Acid will go on but as they are either not so frequent or don't require hospital visits they don't seem so intrusive.

I am four and a half weeks past the last chemo now and most of the side effects have gone. Sense of taste is returning slowly, tingling and numbness in fingers and toes comes and goes but is less and although I am still shedding hair the cold capping works and it is just single hairs and early signs of some regrowth

The Herceptin is not too bad. I get aches and pains for a few days afterwards and some times mild dire rear but nothing too extreme.

My thoughts are with all of you still in the thick of heavy duty treatment and especially with those of you waiting for clarity or results. Of all of the things this disease throws at you I found the fear and uncertainty and the waiting the worst and I was lucky in that the process for me was very fast and I never had to wait very long for anything.

Morning all.

Well no clarity here today. Called the GP this morning as advised by the sonographer on Friday; receptionist said that scan was marked as no action required/await gynae appointment. My (very good) GP had already done an urgent referral to gynae (only found out it was 'urgent' when told by booking line) which is on 9 August.

So could be nothing on scan or could be something on scan but already covered off by urgent referral to gynae. I would be surprised if nothing on scan due to very quick turnaround of scan and being told to call GP today, plus scan was definitely concentrated on the area where I suspect there's a cyst at least (plus she asked about mid cycle bleeding). Also would expect it to say all clear/normal as result of scan rather than mention gynae appointment.

Sigh. I could try the GP again and ask directly, but will be tricky to get to speak to him and reception won't say anything more.

So another two weeks of waiting!

brassica sadly the vibrating cushion is not at all exciting, just designed to help with bum sore!

I am finding people difficult to cope with too, which is why I restrict to only 2 visitors. i cannot focus on more. Also only one lot a day.

Tx for the run iVamp . More required I think! I am enjoying the solitude right now and have just finished Eleanor Oliphant.

My head hurts! but then it would..... I have asked for a panic button.

Brassica I get that too. Sometimes talking/ listening/ being around other people is too much and I have to take myself off.

One of the biggest effects this whole shitty process has had on me us to make me more insular & solitary. I think it's self-protection, & you just have to do what you need to to get through. Also, it has improved, & one day you'll be able to listen to your parents off-load with equanimity . You're probably too emotionally porous to cope with it atm

TQ I've just re-read Eleanor Oliphant. I do love it, although it makes my eyes leak. How are you feeling in yourself now the drama has receded?

Hello & commiserations to newbies. I hope those of you waiting for results get good news & can bugger off into the sunset

I have my appointment for breast biopsy results on Wednesday. I was warned the consultant thought it likely to be cancer. She asked me if I had any questions and I was so taken by surprise I couldn't think of any. I have a lot of ongoing long term health issues so I'm normally very prepared with a list, not on this occasion.
The obvious questions are about surgery and other treatment and timings.
Is there anything I might not have thought of?

kepisback Earlier this year I had a CT scan as a result of an abnormal chest xray. My lovely GP showed me the scan - in fact she printed me a copy, and talked me through it while she did the urgent referral. Is it worth asking for a telephone appointment to discuss the scan? Or do you think it might make matters worse having a little bit of information and still having to wait until your appointment to see the specialist?

Skap if it turns out to be a cancer diagnosis then the consultant will have a running order for information to go through I’m sure so you don’t necessarily need to ask much, but take a notebook and ask for a copy of your pathology if you think that would be helpful. You could make a note in advance to ask things just in case, like what other tests they’ll run before you start treatment (CT, ultrasound, bone scan, etc). What kind of tumour is it, what size, how long might it have been there, will it need chemo and if so is that before or surgery. Do they know whether it is positive for oestrogen, progesterone or HER2. Will there need to be genetic testing. Do they expect a lumpectomy to be possible or is there reason to prefer a mastectomy. If you have other health issues then ask them to let you know how they’ll organise for joined up communication to the extent other conditions are affected/could affect your treatment.

Best of luck and hope it is better news than you think.

Skap thanks - yeah I've made a telephone appointment with the dr on Friday (which was the earliest) as I just need clarity. I'm a need to know everything kind of person, so I need to know if they've found something. In some ways it will be a relief knowing that 'something' is causing the symptoms I'm having, even though I'd rather than something be harmless than not!
Hope that your appointment goes ok - will someone be going with you to make notes if needed? I generally go to all appointments alone as I prefer it that way but I know a lot recommend taking someone with you.

I think Brassica's list of questions is excellent. I wish I had had that list in that clear and succinct form at the time of my early appointments. Having said that the surgeon and the oncologist were both very good at making sure I understood everything and the breast cancer nurse gave me loads of literature and most importantly a contact number so I could ring her with questions.

I have also found that coming here and to a couple of facebook groups specifically for people experiencing specific forms of treatment has been invaluable. Here in particular is a great place for down to earth advice and support from lovely people who have been there and know how it feels.

Best wishes and very good luck for all who are waiting for results and answers.

Just checking in and saying hello. I feel like I'm wading through the marshy pit of treatment with the firm ground of recovery still quite a distance off but maybe just in sight if I squint hard and get the binoculars out!
Just resting on a little grassy patch in the marsh now as emerging from first week and feeling better day by day. I'm hoping for some good days before next chemo on August 5th. Last cycle my good spell was spoiled by having a uti and painful mouth ulcers...no sign of those this time...so far anyway!

I'm going for an actual walk in a bit as I'm feeling like a blob as in reality I haven't ventured far off the sofa this week unless it was to go to the loo or the fridge.

Thinking of those of you waiting or with challenges to face xx

Thank you for that Brassica. Some things I hadn't thought of there.
meercat I think DH is coming with me, it's an hour away. In some ways it would be easier to go alone as son is home from uni and might ask where we are going.

Hi all, belated birthday wishes

Thanks for the welcome

The pain is ok but still find it hard to sleep, the bandage under my arm is driving me mad, I'm very tempted to take it off but I'll wait until I hear back from the nurse, I'm expecting results of lumpectomy and lymph nodes in a few days then I'll know when the treatment starts, at the moment they have said they are pretty sure I'll just have radiotheraphy for five/six weeks.

I have read the thread but can't remember everyones names but my best wishes go out to you all, you're one brave bunch of ladies thanks for the thread it's great to read of peoples experiences.

Hello all. Snows, I did get my head shaved today, hair was falling out so fast, I couldn't bear it. V glad to have had it done. I was meant to be having second chemo today, but got a call yesterday afternoon to say neutrophils too low, so I have to repeat bloods on Thursday and hopefully get chemo Friday. Once more I realise that although I knew this was a common occurrence, I didn't expect it to happen to me, because I'm not really ill, you see, I'm a very healthy person who hardly gets so much as a cold . . Makes me want to laugh and cry at the same time.

WTF so glad you are feeling better and don't have a UTI or ulcers this time, you deserve an easier ride for sure.
kep that's good you've got a telephone appointment with the dr, I hope you get the information you need.
Skap - crossing my fingers for you for tomorrow. You will be well prepared for the appointment anyway. Can someone go with you?
TQ thinking of you every day and wishing you peaceful times and as much physical comfort as possible. I'll never forget how kind you were to me as soon as I started a thread months ago about having a pelvic growth that wasn't a fibroid; I guess that sounded an alarm bell for you.
meercat glad to hear some of the chemo nasties are clearing up, sounds like you are managing the other treatments well atm. Well done your DP for being wonderful - mine is too, and I know how lucky I am.
Waving at everyone else here, Miles, Brassica , everyone I haven't mentioned by name.

Sorry, I'm staying somewhere with very patchy internet access and somehow missed a few posts before mine - Skap I'm glad your DH can go to the appointment with you, I'm sure you can think of something to tell your DS. ellen sorry you are still so uncomfortable, it's hard when you can't sleep (something I know a lot about!). I'm sure it will help when you have the results.

Another scorching day coming up! Let's all keep our cool, ha ha (groan).

Yesterday morning I must have been frowning or something, DP said "Are you worried about anything?" No, I said, not a care in the world, and we both cracked up!

Oh what a pain Bridget - hope it's second time lucky. Do you get the immune system boosting injection 24 hours after Chemo?

All the way through Chemo I used to joke with my oncologist that apart from the cancer I'm really healthy!

Snows, I did get injections to do at home for 5 days after chemo, also I was in hospital for two days before I'd finished them so I got extras while I was in. Body just being obstinate and uncooperative!

Just a quick one to ask @MilesJuppIsMyBitch did you get a PM from me a day or two ago?

Just seen & replies, thanks Brassica

So I'm here to stay ladies if you'll have me.
It was bad news. Last week the doctor had told me she thought it was 80% likely to be breast cancer but the lump was small and would be treated by surgery and radiation.
Today I saw the consultant who confirmed it. However it's going to be chemo (probably first) as well as surgery and radiotherapy. .
I have to have MRI/CT first and they are awaiting the results of the HERT2.
Shit.

So sorry Skap

You're in the right place. We've all been through it here, and we will hold your hand.

Sorry to hear that Skap, it's still a shock even when you're expecting it. Keep posting on here, the support is incredible.
I have had my second chemo today (I'm on simultaneous chemo and radio) and it was ok. I'm not feeling too bad at the moment, due to the massive dose of anti sickness meds I had this morning. I was pretty ropey at the weekend, but I don't think l took the meds early enough. I will try to manage it better this week. The radio side effects haven't kicked in yet, that will be when it really starts to hit me.
I hope your bloods are better tomorrow bridget so that you can keep up the progress.
Love to everyone else and especially to TQ as always x

Thanks mile's and redspook
At the moment for various reasons, I haven't told anyone irl. This means no-one to talk to other than DH. So it's helpful to talk on here.

So sorry Skap that you need to be here but you are very welcome. I had the exact same situation. Lump highly likely to be cancer. Would be treated with surgery and rads and probably tablets and the turned out to need chemo too. I think sometimes it might almost be better if they didn't give any indication of treatment until they know for sure but then that might just make us worry more

Have they given you any indication of when treatment will start?

Hi again Skap - sorry to hear your news. When I saw my surgeon back in December he said “I think you probably have a malignant melanoma but let’s get the biopsy and hopefully it will prove me wrong”

It didn’t, of course, and his honesty was really helpful for me. Although with reference to some of the other comments, my jolly Irish anaesthetist said “So! Are you fit and well?” “Well, we’re about to find out, aren’t we?”

I’m awake quite a lot in the night (lack of sleep due to steroids to try to deal with the side effects of adjuvant therapy) so if you post hopefully someone will be around.

As for me, Friday will be the 6 month anniversary of my operation. With apologies for those who know my story, I had half my vulva (including my clitoris and part of my vagina) removed and skin grafted. I am not (shall we say) completely functional. But the scans say I am cancer free, and I am happy to go with that for now.

Lots of love to everyone, especially those facing crappy uncertainty xx

meercat23 I guess they can't win. I'm glad she forwarned me because I would have trotted in blythely expecting to be told it was nothing (which is what I did last week at the initial appointment).
Toofaroutallmylife you have been through the mill. What a poignant user name. There used to be a poster called NotWavingButIroning, years ago. I've been on MN donkeys years but not as skap.

Skap, I'm really sorry to hear your news, that is crap.
Did you know Macmillan has suggestions for talking to family and friends about a diagnosis? here

Lots of support available here