Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

New thread

Have a lovely day @TopOfTheCliff!

I'm just shortening some jeans to wear later. I haven't been out on an evening in months and am really looking forward to it 😊

I’ve no treatment plan yet because I’m seeing a new consultant for treatment nearer home - I went to a one-stop clinic for diagnosis which is some distance away. But I do feel relieved - relieved that it hasn’t spread and relieved that it’s the most treatable kind.

It is windy, I've just been driving down the M6 and it's blown my car about despite it being weighed down by DD's collected crap from the past year!

@Atreus and @SierraSapphire very useful info on antihistamines. Interesting research. I know we shouldn't google but it is amazing how much we are able to find out on the Internet, provided of course we check that the research papers are from reliable sources. It can be empowering at least in helping to ask more specific questions from our medical teams. The probiotics thing is an interesting tip too. I too took probiotics but thought it best to stop all of my improvised attempts at being healthy (B vitamins, vitamin D, probiotics, etc. - turns out I am actually low on vitamin B12 despite the supplements, go figure) when this shit show started in case they are incompatible with treatment but it sounds like some things might help, particularly the probiotics and antihistamines.
@Florabritannica 'Good' (not the right word of course, but it's all relative in this context) to hear that you are ER positive and HER negative. Good luck with your treatment. It won't be fun, but at least you will be on the road to recovery. It is better, psychologically, once action is taken.

No I was reflecting after posting there's no use for the word 'good' in relation to any types. Apologies

I hate that I am extra bonding with some staff at work who I've worked with and been in friendly terms with for 15 years because they also have breast cancer. Both in the last year. I hate we are in that position. Though it's also supportive.

And a couple of local mums.

I know I can think of six nurses and doctors off the top of my head in the last two years. I dont know what its all about I really dont.

i woke up at 4pm today Im surprised i never peed the bed. I mustve been exhausted. It always happens three days after chemo. It will be strange next week not going. I assume I still go weekly to get my picc line flushed? My groin has gone down. Please god its enough. I have my scans the day we have booked to watch Barbie. Its also the radiologist strike day so I wont be holding my breath.

Having had treatable breast cancer last year and now facing a stage 4 different cancer which is very unlikely to be treatable, from my current perspective it kind of feels to me that there are "good" and "bad" cancers. But there is no way I would have thought or felt that last year when I was being treated for BC. Despite knowing it was treatable and hearing countless stories which were meant to cheer me up about friends of friends who were "absolutely fine now", it didn't feel like a "good" cancer.

Sending unmumsnetty love twig

@Ikeameatballlunch No need to apologise. I did not mean to criticise. I was just reflecting on how it seems to both make sense and not to make sense to describe cancers as 'good' or 'bad' - like @TwigTheWonderKid describes.
A doctor once told me, upon being informed I had hodgkins lymphoma 26 years ago aged 23 as I sat there in total shock: 'If you're gonna have cancer, this is the one to have' . This was both reassuring and made no sense. After being diagnosed with triple negative breast cancer this May, I did think to myself lymphoma was 'better' by comparison, although, in a wierd twist of fate, it was the radiotherapy to my chest for the lymphoma that caused my BC. So, it turned out not be 'the cancer to have'...
Much love to all here.

I think it’s just the prognosis that makes the cancer ‘good’ or ‘bad’
All cancer is scary.

Mine isn’t curable - and was stage 4 at diagnosis- but I think they can manage it/ control it (till they can’t).

I had a friend who made a big deal about her breast cancer (now over 5 years ago). I now realise how complicated breast cancer is - from this thread.

In retrospect she seems to have been lucky - ‘just’ the operation and no chemo or radiotherapy. I don’t know about maintenance- but she has never mentioned any.

So when I met her - obviously I was sorry she’d been through so much - and now I’m in my own situation I would prefer to have a cancer like hers that was curable.

But obviously all cancer is stressful and scary, and can run an unpredictable course.

Yesterday’s wedding was magical. The bride was a friend of my DDs who I have known and loved since she was 3. It was in our parish church with a full choir and piano and organ so the music was spectacular. The brides DSis is a professional singer and made everyone well up with the beauty of her singing. All my best friends were there to celebrate then the family and friends of the couple went on to the reception. We were the gawkers enjoying the service from the back! My heart is full today.
@TwigTheWonderKid there seem to be folks who get cancer and have a light brush with treatment and a good prognosis, then there are others who get the heavy guns and stay under the cosh for ages. Whether the long term lookout is any worse for those of us who get the full whack of treatment seems arbitrary. And the rate of recurrence seems arbitrary too. It’s such a capricious illness and hard to know what to think. I don’t really want to know the future in case it is one of endless hospital visits and vile pills and infusions. But it probably won’t be and I will be worrying for nothing. It does your head in!
Happy Sunday folks

I understand this.

I had stage 1a MOC and some people certainly do downplay stage 1a cancers. They’ll say it’s great you didn’t need chemotherapy. But what they don’t realise is that with my particular cancer there isn’t really a treatment option apart from a shot in the dark go at treating it with a chemotherapy for bowel cancer. There aren't any other options so, so much for it being a good cancer to get.

But this has also made me think of the days when my son would be in agonies with his Classic Kanners Autism (long before he’d been diagnosed with Epilepsy, Tourette’s Syndrome and Bi Polar Disorder also) and I’d lie in bed at night and look to the sky’s and say “couldn’t it have been Down Syndrome instead”. It seemed to me it would have been so much more easier on him but then you learn as you go through life and realise there isnt really such a thing as easier or preferable.

Has anyone else experienced finger and toe nails falling out after chemo? I don't mind it when they are gone, but it is the weeks of fragile wobblyness leading up to losing the nail that I am struggling with? Any tips? I am covering the ends of my fingers with plasters at the moment

Im really sorry for your situation, it must be hard sending you lots of love.

I know what you mean about breast cancer - I have played it down with my children, telling them all the happy statistics, etc, but I have kept to myself that mine is complicated, and the prognosis isn't actually that great. There is no need for them to know that, at least for another two or three years, I dont think, and they can carry on enjoying life without worrying about it for now

@orangeleavesinautumn my big toenails are currently departing for the second time. They fell out after EC-T IV chemo and grew back. Now they are falling out with Capecitabine. They get loose and start to flap about then eventually a gentle tug makes them come loose. There is also a foul smell from the nail bed. They take about six months to regrow. The other nails have all been fine. I agree the flappy stage is the worst and using plasters seems a good idea.

o thank you! it is actually quite reassuring to know I am not alone in this. I am quite afraid of upsetting someone by dropping a fingernail on them at work! That is my biggest fear.

@orangeleavesinautumn it’s amazing that you are still working during treatment. The odd stray body part falling off is a small price your colleagues pay for having you there. I couldn’t have done it.

@orangeleavesinautumn my toenails went completely, my fingernails detached from the nail bed and died but didn’t fall off. Fingernails are now all growing back fine, toenails less so. I wasn’t expecting it so found it quite upsetting and it does make opening packets and cans quite tricky. My kids got used to me just handing everything straight to them to open.

@orangeleavesinautumn
I’m sorry. Cancer, like many umbrella terms, covers such a multitude and is also individually unpredictable. It must be hard when within the one diagnosis of Breast Cancer - there is such a range of prognoses.

@PollyThePixie My son (21) also has Tourette’s- not the other diagnoses. But he does have that condition severely and it does impact his life significantly. (He is fortunate that he has some good things from Tourette syndrome- his intelligence combined with obsessionality ( from Tourette’s) drives him significantly

I’m finding - when I go out in public with my headscarf- that I have a tiny inkling of what it must have been like for him. Standing out to other people when you’d really rather not.

How is your son doing?

@PollyThePixie My daughter actually also has Tourette’s. But not doing so well. She probably is on the autistic spectrum. But in lockdown formed a delusion that she didn’t ever have T, and that I made it up to get attention from Drs. This is still going on.
I guess I didn’t want you to think I have it easy. Tourette’s is very complicated and very individual

@EachandEveryone re your PICC line, I was given the option of the district nurse coming to do the flush or having a friend/family member do it - in the end my 17 year old dd learned to do it and was quite proud of herself.

Hey ladies ❤️ Been a few days since I last wrote on here. I saw the oncologist on Friday but unfortunately the surgeon wasn't there, he was rushed down to deal with an acute appendicitis case (the irony wasn't lost on me!). To cut a long story short, I'll need a double mastectomy - the secretary will call me tomorrow with a date but it will be this week. I caught up with the surgeon yesterday but he told me something slightly different about my lymph nodes 😕

I'm feeling ok about it all, just trying to put things in place re my cats while I'm in hospital 😸

I was speaking to my lovely boss the other day, we were discussing how they'd explain my absence to my colleagues (I'll be off for a few weeks probably). I said "Just tell them I've had a complete mental breakdown and I need some time off" 😂 But then if I come back in September with new boobs....!! 🤣🤣🤣

I guess I didn’t want you to think I have it easy. Tourette’s is very complicated and very individual

Hi there Red Roses, I would never think that. 😊

It took a long time for my sons Autistic stimming to be seen as a stand alone Tourette’s diagnosis. It only happened when he had a massive deterioration during puberty. I could see it had crossed a border so to speak. His is mostly motor ticks but he has picked up swearing from the internet and Im inclined to blame it on his Tourette’s when out in public. He’s actually a right character and loves shocking people to make them laugh. The epilepsy also started in his teens but the BPD only became a definite diagnosis when he has the most awful of episodes just after his 31st birthday. There had been questionable indications previously but last year there was no doubt whatsoever. And truth be told I don’t actually see him with all his different parts. I just see him, my darling boy who I’ve just been dancing with to ‘When the red red Robbin goes bob bob bobbing along’ before he went up to bed. He’s very partial to a dance in what he calls his office before he goes up to bed at 7.

How does your son keep? Is he studying or managing to work? And yes I can well imagine the attention he attracts. My son is a giant and it kind of puts people off from staring too much and I’ll never forget when he was about 17 and he shaved his eyebrows of and took a chunk out of his hair. We took him to the mall in Dubai a few days later and he started running to the Virgin shop he was so excited. He was like a drunk version of a 6 foot 4 tigger and people scattered in all directions. I think it was his cap falling off when he was running and people seeing tigger didn’t have an eyebrow to his name as well as a huge chunk out of his hair. We still laugh about it.

And it’s awful you attract so much attention with your headscarf because so many ladies in the UK wear a headscarf anyway so why the need to stare?

Your daughter - would she benefit from a diagnosis? Can she manage her day? And the obsessive thoughts I well understand. My son is driven to hell by them. Your poor girl.

I’m currently querying autism in one of my grandchildren but I think he’s so HF that it’s just a bit too early to diagnose him so we’ll wait a while longer.

its been nice chatting to you.

@PollyCreo my friend with BC told people she was having an "operation on my shoulder". And I would hope your colleagues aren't acquainted enough with your breasts to notice the difference . I told people that I was having a hysterectomy but not why, then that there were "unexpected complications" with my operation when I ended up having chemo, but I'm self-employed and mainly not working with the same people day in and day out.