Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

New page

@TopOfTheCliff
I’m laughing at the behave myself beautifully comment. I’m like that. Maybe it’s being medical? (For me, many years ago).
I tried to get counselling with the psychoncology service recently- because I have other piles of shit in my life - which have partly reignited because of having cancer. But I’m not eligible because I’m coping with having the actual cancer.
🤣🤣🤣 - I’ve been very eloquent in why I’m not impressed- think this will be regarded as trouble making.

Ive booked yoga at Maggies on Friday. Im determined to go this time. I found them quite cliquey last time I went. I mean not the people that run it, more the More the North London brigade. Its like they've just kept on going and going and now cant get out of the habit😃 That has occurred to me before would Maggies just kick you out if they thought ypud had enough freebies and should really be getting on with your life now? 😃

@RedRosesPinkLilies I had a similar issue, I was told I had another condition a few years ago that might kill me or might never affect me, which was obviously quite difficult to get my head around, but because I was distressed about something specific rather than nothing in particular the computer said no. It’s ludicrous. I’m not medical but I have a lot of psychology / neuroscience / health knowledge through work and study so I’m also pretty choosy about who I work with and what I do.

That’s exactly me. I was a Psychiatric Registrar when I gave up work - so I’m not keen on working with people that I think have just done a short counselling course.

In this case it was the Head Psychologist that said ‘no’. A Dr so and so.
She says the service was only for people not coming to terms with having cancer. I told her that was a silly idea - who doesn’t struggle at some point? Even if they have the resilience to cope/ rationalise most of the time. I was actually pretty angry.

@EachandEveryone Ive done Qigong at Maggies - loved it

Thanks all for your nice messages about my last chemo and moving on into the next stage of all this! I had a really nice day, shared my room with a lovely lady this morning and then after she left spent the afternoon planning out walking the South Downs Way later in the year. I also signed up for a Moving Forward face to face course in October and decided that I was going to pull up my big girl pants and go to a scientific Congress in early October to re-connect with my professional network and re-kickstart my consultancy business. Finally I made some enquires about joining a local health club to try and get my fitness back and start some strength training. Now...how much of this is actually sensible and how much of this is because I'm off my tits on steroids, only time will tell. But it felt good to take control about what may come next. Oh, and I also got my oncologist to agree to me waiting a month or so before starting the hormone blockers so all in all a good day

I hope this doesn't cause offence to anyone as I know hair loss is distressing but I saw this shop in Herves, Spain and it did make me laugh

@EachandEveryone I go to a free yoga class paid for by the local NHS Trust. It is meant to be for people recovering from cancer and you get six months in theory . Most of the ladies have been going ten or fifteen years but everybody has had breast cancer. The vibe is warm and welcoming but I was terrified the first few weeks and felt they were all such close friends I wouldn’t be welcome. Since then I’ve grown to love them. We do yoga on the beach, yoga with alpacas, meditation, cream teas, spa days, and I am so glad I persevered. Now I am part of the old guard welcoming scared newbies and it is lovely.
@RedRosesPinkLilies I agree with you about briefly trained therapists. I am a bit scared that somebody will ask me about my experience and unleash a huge flood of rage and resentment I have locked up inside me and I will frighten innocent bystanders. I need a safe pair of hands to detonate what I am carrying. Either that or I will just go out and shout at the sea or out on the moors. It will have to come out eventually. My BCN offered me NHS psychologists but I feel they should be used for people who aren’t coping. I am a magnificent Coper! But once I’m through all this rubbish I may fall apart. Who knows?

@Atreus I howled with laughter at “ off my tits on steroids” Of course you are! It’s that lovely manic surge of energy that’s propels you forward before you collapse in a heap. Great to have some plans for The Other Side of treatment. I had to try hard not to buy things when OMTOS. The lovely parcels that turned up the following week were such a surprise!

Offmytitsonsteroids would be a great user name.
As would yogawithalpacas.
Tales of six week counselling courses and computer-says-no are filling me with horror. I definitely need some help to deal with going in the space of a week from academic to cancer patient; but I’m not sure where to find it.

@EachandEveryone it took me ages to actually go to Future Dreams house (a breast cancer charity). Anyway, first thing I went to was very cliquey which put me right off. It reminded me of baby groups! I then went back to a menopause after cancer session and had a really good chat with various women without the cliques so I will go again. Some people forget they were a new face at one time.
I popped into Maggie's once, they were lovely people running it but I never went back.
@TopOfTheCliff yoga with alpacas?!

Yes I felt the same about Maggies but I will give it another go.

@TopOfTheCliff
Given my recent experience I think I’m just going to go back to coping. It’s much less traumatic than asking for help and being turned down.

@Florabritannica - you’re obviously intelligent- you’ll find the strength. There’ll be help on this thread/ info online etc. It’s such a life changing and daunting event being diagnosed with cancer - but hopefully we have more strength than we realise, in order to cope with this scenario

@RedRosesPinkLilies I’m not sure whether I have the right kind of intelligence, but I’m warmed by your kind words.
I do wonder sometimes whether as women of a certain age (for the most part) we’re more adept at shrugging our shoulders and dealing with the inevitable shit when it happens. Not denying its existence, or (heaven forfend) going all Pollyanna, but just keeping buggering on, off our tits on steroids, going off in search of puffins, crocheting frogs, or finding our chataranga with alpacas.

@Florabritannica if I have learned anything from the shitstorm that has been the last three years it is that I am STRONG! Immensely resilient patient and brave and yet I cry, I am afraid and I rant. It helps to let it out but I know that whatever they throw at me I will shrug and crack on. Fundamentally I trust my doctors that this horrible treatment is the way forward and on the other side will be a better place.

@Vinorosso74 I live near Totnes which is twinned with Narnia. It is full of delightfully eccentric folk. Our local alpaca farm welcomes us into a field full of alpacas old and young and we put our mats in a circle with hay in the middle. The alpacas ignore us and go to eat the hay while the crazy ladies make assumptions that they have formed a special bond with a camelid. It makes me laugh a lot and there is a nice pub next door we go to afterwards. Some of the ladies go back there to meditate. (The farm not the pub!)

@TopOfTheCliff wow 5000mg is an impressive dose of Cape! I was on 3500mg to begin with and had to reduce to 2500mg for my final cycle.

I have a friend who has two pet alpacas and I love them. She keeps posting photos of her children and I’m thinking bugger the children, I’ve got two of those! Where are the alpacas? They look adorable but I think they are actually quite moody little bastards. She posted a video of them being shorn - it was like WWF with added spitting.

@TopOfTheCliff yoga with alpacas is utterly brilliant! What a great idea! I tend to do yoga with my dog… he’s very good but gets in the way a bit!

Three weeks tomorrow since surgery. Rather traumatic when the bandages came off - quite a few tears looking at my chest. But it’s a work in progress.

I’ve got radiotherapy next and I’m assuming the oncologist is going to put me on some more meds. Anyone on the thread who is post chemo/post surgery for TNBC and can give me any pointers about the drugs?

A friend came over for coffee this morning and I took the dog to the dog park for the first time in months today and sat in the sunshine. Small things make such a big difference…

Hope the sun shines on everyone on this thread today.

@TopOfTheCliff laughing at Totnes being twinned with Narnia!!

There’s nowt crazy going on where I live - reflexology is all I’ve found. Yoga with alpacas sounds brilliant.

I'm firmly in the blinkers on & crack on with what's thrown at me camp - even though I have literally no idea what comes next. I'll carry on distracting myself with crafting & stuff with the girls 🤷‍♀️

Bloods for me today, should be a fairly quick trip with my dad then home to take dd2 into town for an hour or two. Maybe we'll stop off at Costa for a coffee.

I'm hoping to finish the treasure chest I've been making today too, and start varnishing...then crochet tree tops will fill the rest of the week.

I like the sound of yoga with alpacas, not sure I have the motivation to actually do something like that irl though!

@LemonDrizzle10 there's not much in the way of crazy going on round here either 🤷‍♀️

Yoga with alpacas sounds ridiculously stupid. Sign me up 😂😂

@Lisdeflores that sign gave me a grin, I have a short haircut planned for next week which I'm not going to enjoy as have never wanted short hair and it doesn't suit me. But I liked the sign 😁 and the sunshine!

I am trying to come to terms with being on chemo (first infusion last Thurs). I had such strict instructions from the lovely nurses to ring them with problems and to try and get side effects sorted before they were big problems. But I just feel WRONG. Nothing specific is a big issue I just feel a bit bloated, tired, sick, jittery, bit of everything. I am trying to keep buggering on with work (only pt from home) but I think it's mainly stubbornness keeping me going. But then a bit of me is saying that if all this wasn't chemo it was, say, a hangover, I would totally battle through.

And if I tell anyone this IRL then they will say "well call in sick then" and I don't want to. So I'm telling you lot. Work is a bit of my life that I'm actually really pleased with (nothing mind blowing just a job I enjoy and can do and is flexible and I like the people), and I would really like there to be just one area of my life that hasn't gone completely tits up. But I'm tired ☹️ sorry this is a bit self pitying!!

@AllotmentTime I enjoyed doing some part time work - it was nice to have something useful to do between my naps!
I’m usually a teacher - wasn’t allowed to do that - I’ve been doing some of my boss’s work - she’s always overloaded: it’s been lovely to help her.

@LemonDrizzle10 I’m a teacher too! I did a load of exam marking when chemo was over and I was feeling better.

@AllotmentTime Well done for keeping working. I think it’s important to try and keep some normal if you can. But also listen to your body and rest when you need to/can.

I hope in a few weeks to do some exercise and some yoga. Still got the drain in at the moment, can’t really do much as yet. But hopefully soon.

@FairyWren7 my second cancer was a TNBC. After surgery it depends on the pathology results. If you have had chemotherapy beforehand and the tumour has totally disappeared then you may just get radiotherapy and you will be done. Hormone blockers don’t work on TNBC although they are sometimes given to prevent brain metastases. If there is residual live cancer ( I had a 3mm blob) then you may be offered oral Capecitabine which is to mop up the stray cells and reduce the chance of recurrence. If you were on immunotherapy before surgery that may continue for a while. If you are post menopause you may get offered bone infusions of bisphosphonates for three years to reduce the chance of bony metastases. Needless to say I have had all of these except immunotherapy which I was too early to qualify for. At your results appointment they will tell you what the MDT has advised in your case.
Take it easy and let things heal.

Totnes is a great place. In the market you can buy a laminated A4 sheet of fractal images that promises if you stand on it your metabolism will realign with the universe. You can buy locally grown chilli jam or chilli chocolate. There is also a brilliant gelato shop with the best ice cream. I love it.

Sending strength to all. I’m off out to see a friend who has had her gallbladder removed and is feeling sorry for herself.
Top

@AllotmentTime I'm glad the photo made you grin it did me I'm sure there some thing I'm missing that my very basic spanish can't access. We certainly out having out fill of sunshine 41°+ a bit too hot!

I hope I can bring some sunshine to the thread and this is Marvão in Portugal which is just over the border from where we are in Spain. A real life fairytale castle.
Much love to everyone