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.

@skap and @DuckyMcDuck thanks for comments re breast cancer drugs. I will ask friend if Anastrozole has been suggested.
@inotternews I can't imagine how awful that must have been. Really hope you can manage without a tube now. Can they not supplement whatever you can keep down with some IV nutrients? That might be a completely ridiculous idea, forgive me if so.

@Topofthecliff I often choose Chopin, solo piano pieces, when I need comfort and distraction.

Too right, Bridget. Perfect choice.

Another vote for Chopin here. Also Bach (preludes and fugues for piano i find especially helpful. Absorbing without making me feel teary!) Love Pachelbel's Canon too but I walked down the aisle to that so can't hear it without welling up a bit - soppy date that I am

Thinking of you @InOtterNews, really hope a better solution had been found for feeding and that you can escape before too long. So sorry you are having to deal with all this xx

Best wishes to you all this coming week, especially my fellow haem dweller @InOtterNews

SnowsInWater here with a name change, it just seems so right (and I couldn’t believe it was available) so I kind of want to keep it!

@InOtterNews Sorry you are having such a tough time, that hospital stay was never going to be fun but it does seem unfairly harsh!

@Bloodybridget I take Femara which is a particular brand of Letrazole which I can live with and my Onco was very specific about the brand. I do take prescription melatonin to sleep though and the fatigue is still there but I can do boxing at the gym and do some work and generally live a reasonably normal life with some adjustments so I guess that’s not too bad. Maybe ask your friend to ask her Onco if it’s available in the UK? My three oncologists (surgical, medical and radiotherapy) have all said that for me (Inflammatory BC) the hormone therapy is crucial which may not be the same with other types.

Warm wishes to everyone else here xx

@FlatandFabulous how nice to see you, and thanks for the suggestion. I will mention it, but friend has said she just wants to be drug-free for a bit and see how she feels. You are obviously fabulous ! Does the flat element refer to state of mind or state of body?
@iVampire apologies that I can't think what's happening for you atm. I did think of you with news about the London Marathon yesterday. Next year!
I am grumpy and bored, self isolation seems endless, I can't believe I still have nine bloody days of it. I'm not even going to qualify that with how unreasonable I'm being and how much worse it could be, and it in no way lessens my sympathy for everyone who is coping with far worse, including so many on this thread.

Love your new user name @FlatandFabulous! It has prompted me to say I have an appointment with a breast surgeon in a couple of weeks to discuss surgery options. And there are so many! One playing on my mind is that I think I would prefer a double mastectomy. When I was diagnosed, it was my 3rd trip to the breast unit in 2 years with the same set of issues (pain, dense feeling, breast seemed bigger...). Neither previous visit had picked up any issues, all very reassuring, yet on my 3rd visit i discovered i have stage 3 breast cancer with cancer spread through the breast and in lymph nodes. So I'm thinking that although I know the chance of a new primary breast cancer in the other breast is probably pretty small, the chances that I will ever get any reassurance from scans seems small and I don't think I want to live with that worry.
Then there are all the reconstruction options to think about! If anyone is up for sharing their own experience of this stuff I'd be really interested!
Also @flatandfabulous it's great to hear your getting on reasonably well with the hormone treatment.

@Bloodybridget 9 more days of isolation is tough, complain away!! One day at a time and all that. Still rubbish though! xx

@Bloodybridget - for heavens sake don’t apologise! I’m in such a different boat to so many of the posters here that I don’t expect anyone to keep track. I’m on 12 weekly monitoring for re-prescribing, and get a bit anxious about how I’m doing around that time. And yearly repeats for mammograms for the next 5 years (next is Aug/Sept next year, so far too far away to think about)

Talking of boats - one would have been quite useful yesterday! Very soggy, but I did it!!

The ankle held up absolutely fine, but I’d missed so much training that it was very hard work, with various achy bits in hips/calves plus totally waterlogged feet (blisters, for the first time ever). I managed to run about half of it (slowly!) then run/walk until about the 22 mile point from which I just walked. So a shockingly bad time, but I did it!!!!

I was fundraising for my local cancer support centre, and really proud to do my bit for them as they have been fantastic and like so many small charities are in a bit of a tough time at the moment

@iVampire you amazing human! I hope you are having an extremely restful day today after that and also that you feel a massive sense of achievement 👏 👍 😀

Oh very well done @iVampire, that is really impressive! I didn't know you would actually be able to do it this year, hence my reference to 2021! It was such a vile day for it. You should have a plaque dedicated to you in the cancer centre!

The charity is arranging a deferred place (all 2020 places can be deferred) so yes, I might be at it next year as well!

@Lubballoo

Love your new user name *@FlatandFabulous*! It has prompted me to say I have an appointment with a breast surgeon in a couple of weeks to discuss surgery options. And there are so many! One playing on my mind is that I think I would prefer a double mastectomy. When I was diagnosed, it was my 3rd trip to the breast unit in 2 years with the same set of issues (pain, dense feeling, breast seemed bigger...). Neither previous visit had picked up any issues, all very reassuring, yet on my 3rd visit i discovered i have stage 3 breast cancer with cancer spread through the breast and in lymph nodes. So I'm thinking that although I know the chance of a new primary breast cancer in the other breast is probably pretty small, the chances that I will ever get any reassurance from scans seems small and I don't think I want to live with that worry. Then there are all the reconstruction options to think about! If anyone is up for sharing their own experience of this stuff I'd be really interested! Also *@flatandfabulous* it's great to hear your getting on reasonably well with the hormone treatment.

@Lubballoo I opted to have a double mastectomy even though I only had cancer in 1 breast. Apparently, I had 'very dense, lumpy' boobs and I had had to have 3 (painful) core biopsies to see if what they could see on the ultrasound in the other one was sinister, (it wasn't). The doctors said that it was probable, I would have to have similar investigations in the future.

I decided not to have any reconstruction and now use prosthetics. My reasons were: that a number of people I knew had had problems with the implants or infections and had to have additional surgery to sort them out. Also, that the implants would have to be changed after about 10 years and I didn't want that hanging over me. The option of using your own tissue (can't remember what it's called now) didn't appeal as it would have meant a much longer operation and recovery time. The fact I was in my late 40s and been with DH for nearly 30 years and he was totally supportive of this decision, helped my choice massively.

7 years later, I have no doubt that this was the best decision for me and I have no regrets at all.

I hope this helps, please feel free to ask any questions either here or PM me.

Hello ladies.

Shout out to @iVampire for marathon running escapades! Bravo!

I was so close. I'd just reached 48 of no temperature and the Dr uttered the words "maybe go home at the end of the week"...no sooner than 2 hours later
my temperature goes up. So I'm back on protocol 😩

I do feel a million miles better today. I even got dressed. Barring the dry/sore throat from the mucositis that also seems to be clearing up slowly.

Waves at everyone - hope you're all ok x

iVampire, OMG, we are not worthy! That is such an incredible achievement , wow! I can only hobble from the sofa to the loo at the moment, and I've almost run out of time doing that a few times!

Oh @InOtterNews that is such a shame! But I' so pleased that you are feeling better, that's fantastic!

@BitOfFun you're probably making as much effort getting to the loo as Vampire did on the marathon. So well done you, too, for your courage and perseverance.

@Bloodybridget Flat definitely only refers to my body shape, 17yo DD and I had a good giggle yesterday when we went shopping and she spent half an hour trying on bras looking for the perfect strapless one. When she said how much she hated shopping for bras I truthfully said there were some real upsides to having no boobs! I think the assistant was a bit bemused that we found shopping for bras so funny,

@Lubballoo Everyone is different but I knew from the start that I wanted a double mx and was very happy when my surgeon said "sure, totally understand why". With inflammatory BC mastectomy is the only option and even though I have been told it doesn't change the chance of reoccurrence I still think at least you can't get a tumor in a boob you don't have. I have met a number of people who did one then had to go again a few years later and I hated the thought. I assumed I would wear prosthetics but I am lazy and haven't bothered. I am a pretty casual dresser though. Good luck xx

I'm starting Fulvestrant this afternoon, hopefully! I'm going to be talking to them about more pain-relieving radiotherapy too, as I can hardly walk any more and I'm in agony when I move. Having said that, yesterday I got back from my yearly eye test at the optician's about 300 yards round the corner- my mum took me in the wheelchair to drop me off, but I got back (very slowly) with just a walking stick. I cut a pretty pathetic figure, I suppose, but it's the furthest I've walked in a long time. Pyjamas firmly back on afterwards, and Sewing Bee repeats on the telly!

Mum is getting a pass at reception today so she can be with me and push the chair.

Oh bugger, I didn't get any bloods done! The nurse at Clatterbridge just called, and it's too late to get results back in time now. So the injections will keep until tomorrow, but I'll go in shortly just for bloods, and I hope to see the head nurse or onco about setting up radiotherapy to my pelvis and legs.

I hope the bloods appt went well

(And yes, I think your achievement is greater than mine)

@BitOfFun heroic rather than pathetic, I think. Hope you did get bloods done, and can get treatment to alleviate the pain. Good to have your mum around!

@iVampire have you recovered from the Marathon?

@InOtterNews how are you doing today? Has your temperature settled down again?

I haven't needed any painkillers since early Monday morning, and have no dressing on the incision sites now. The suture from the drain comes out on Friday. Tomorrow is mine and DP's 20th anniversary and I have written a sonnet for her! OK, doggerel, but it rhymes and scans

Best of luck with the treatment @BitOfFun I know it sounds a bit weird from a stranger on the other side of the world but I think of you often x

@BitOfFun I hope the treatment helps,you can get some help with pain control and can continue with your heroic walks xx