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

[LemonDrizzle10]

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@CoachBeardsJane that's amazing - I'm actually a bit shocked that drugs can do that! Shocked as in amazed btw!

I'm going to suck it up on Thursday & hope I'm back and not too tired for the second thing, in the afternoon. Won't be railroaded next time though - big girl pants on!

All your descriptions of the MRI make it sound less terrifying than I envisioned, even though it wasn't me asking. Will they just stop if you're struggling?

Yes with the MRI there's a squeezy thing you can squeeze to get them to take a break you have all the time. I am sure they are very used to scared patients. I certainly cried in mine, it wasn't bad it was just a scan to see how bad the cancer was and was put face down and they made me wear a mask. I asked could I take it off they said no. But I think the masks have stopped now or at least they've calmed down a lot. Mine had music and was like lying on a bed. Lasted about 20 mins. The nurse held my hand through it.

For a breast one best to go in top and bottoms so can keep bottom half on, we had no choice in gown. Avoid anything with metal. I also used to wear velvet so it was soft and could stroke it when anxious.

Some of them are much wider than others. If you ever get put in one which is really narrow head first and can't do it you can ask for the wide scanner, make a huge difference. I also overheated in the tight scanner felt like I was being cooked and had to get them to stop - that was a spine one.

I honestly didn't find the MRI that bad. It helped me to compare it to previous loud noises where I've genuinely been scared of something eg camping when windy and worrying the tent will leak, or a newborn crying for hours and I can't settle her- by contrast, the MRI noise is unpleasant but normal and to be expected and does not indicate anything that I need to be worried about.

It reminded me of an aeroplane, similar kind of "metallic" semi-echoey bang noises to if you're sitting by the window and lean your head against it.

Hope that helps

I had a head MRI scan and it was way better than I expected. The room was light and airy and the men were very jolly. They offered me crap classical or crap pop music to listen to. Then I climbed onto the trolley thing and settled on my back. The machine came over my head but it was all white and there were mirrors so I could see the radiographers and I had a buzzer if I wanted to stop. They spoke through the headphones to talk to me. It took about 30 minutes and there was lots of muffled banging but I actually fell asleep with the crap classical music. All in all quite an interesting experience and nowhere near as bad as I was expecting.

The MRI reminds me of my days dancing to techno....

My head one had no music but was in a wide scanner. The noise was like roaddrills but it was manageable. My bad one was a spine one in a mobile unit outside which was headfirst into a really tight tube which was shut no music like a road drill in each ear and it kept feeling like my head was about to catch fire. So I had to stop it every 5 minutes. Breast one is head nearest the end and head down which is better, that had music and was wider, was the mask I didn't like. Though I prefer them to CTs as no radiation.

@CoachBeardsJane thats a fantastic result, so happy for you!

@TopOfTheCliff I’m about to start my 4th round of Capecitabine (plus infusion of Oxaliplatin) this week. I’m going to have a dose reduction as well due to ending up in hospital with uncontrollable diarrhoea last cycle. I have skin peeling off my hands and feet but it’s not painful, just annoying. I had to have a reduction in my infusion as well after the first one made my hands curl up and be unusable. I was feeling a bit pathetic at not being able to cope with full doses but my oncologist has reassured me that her job is to push me to my limits, not beyond them.

Hello. Nice to still see some familiar faces, although that sounds strange... sorry I'm straight into a rant, no time for tea and biscuits and hand shaking...Well after flouncing off a while ago, I now have an unsolvable dilemma. The Palbociclib is failing after just 9 cycles 😡& the tumours in my lung are growing again, the utter bastards. I'm being switched to Cape but this seems like a fairly long process, and I need a complex blood test to check for an enzyme, DPYD, which will determine dosing. This will take a 'a few weeks' apparently. In the meantime I was supposed to be off to the US with DD on Thursday. Oncologist happy for me to go but if I feel ill obviously he cheerily said 'to jump on a plane and come back.' I'm uninsurable as there's been a change in my condition, but can phone the firm when they're open tomorrow & they will look at my circumstances. Supposed to be going home to stay with my family for 6 weeks, for my DD's birthday and she is soooo excited. Well so was I briefly but I was waiting for the other shoe to drop. So my options are to cancel the whole thing ( will get airline credit) & sit around like a potato at home all summer waiting for the NHS to produce this wonder drug & then grapple with all its well-known horrible side effects . Or go anyway, load up on morphine, rest when I'm there & hope & prat I don't get sicker - (might need some pleural drainage) or worst scenario really - too sick to come home.

FUCK THIS. THIS IS WHAT HAPPENS WHEN YOU MAKE PLANS

where's the 🔮when you need one.

@CoachBeardsJane fantastic news!!! All hail the wonder drugs.

@SierraSapphire thank you…you’ve change my mind set to any future mri…I too will be imaginary dancing!

I’ve surgery tomorrow to cut the little bastard out. Trying not to think too much about it!

Lovely to see you again Mowly If it were me I would go to the US uninsured but it does depend how ill you feel and how likely it is you would not need anything but I'm for living whilst you get the chance. I went to Maldives and Porto / Azores uninsured though with DH. Not that DH has any medical knowledge, he is prone to giving medical advice which he makes up but I figured he could carry me to a plane if something went wrong. But in my case I had finished apart from Tamoxifen so very low risk of issues and am cynical about insurance as when I took it for 2020 and whole holiday went west the insurance company paid out nothing. I did get money back apart from £500 with AirAsia in vouchers after a years calling places direct. Just taught me never take MN advice to book places yourself a year in advance.

I guess if you wouldn't be missing treatment here that would be best but sounds like that could be worked around. Then other issue is what if you get ill over there, presumably if staying with family they could help but medical costs in US could be ££££. So how much risk are you and how much would that cost and could you finance it worst case scenario. Insurance is designed to make a profit. Also in the very worst case I thought you wanted to be with your family in the US though hope won't be that and shouldn't be.

Hope surgery goes as well as it can What

Anxiety is really kicking in for me now as surgery tomorrow. The surgeon has been away and I still need to find out if I can just have implants rather than the diep. The lack of this piece of information is making me very stressed.

Sorry I am very tunnel visioned with my own shit at the moment. Could really do with some support. Didn’t get any response to my last post on the thread.

Hope everyone is going ok today.

Tomorrow it will be out of my hands…

Hope it goes as well as it can tomorrow Fairywren I have not had any reconstruction yet so don't know that much but was also told radio can damage implants and I think to a lesser extent diep. Its also a different team that do implants to one's doing diep at my hospital. I was told if not immediate should be 12 months after radio.

Best to ask your team but I think its roughly a 25% fail rate on implants before radio.

@Silkierabbit thanks for getting back to me. I phoned the radiologist in the end yesterday and he seemed to think it would be ok. He said they usually just work around it. It just worries that different advice is being given.

I wish I didn’t feel so anxious, I think it’s a build up of all the previous surgeries.

@Silkierabbit funny I’ve had good experiences with insurance before! time before last I was in the US (pre-cancer reoccurrence) I got so intoxicated I fell flat on my face trying to pet a dog. Knocked a tooth that had as a child, many many years ago been broken and fixed & ended up needing a root canal. All paid for. Better than if it happened here as I don’t have an NHS dentist!

and when we went to Lanzarote in April DD got a teeny tiny shell stuck up her nose that needed a dr to come to hotel and much much head scratching and different instruments used until finally they had to numb the nostril with anaesthetic cream so dr could get it out. €250 bill & they paid up no questions asked!

yeah I am minded to go as long as I feel ok to get on the plane on Thursday. I’m in more pain and breathless but those are manageable at the moment with morphine. If I need a pleural drainage in the US I’m sure we can cover the cost. But if I need to go to the emergency room; say if my blood disease really takes off like last time I landed in ED in UK; or bad chest infection - also an ED admittance and 3 day hospital stay I don’t think we can cover that that would be tens of thousands if not more.

So I’d be hoping to be well enough at least to be able to get home again, but honestly the last two times I was admitted to hospital I wasn’t well enough to crawl to the shower or get in car let alone get a transatlantic flight so it is a worry.

I’m always minded to live while I can though. That’s part of the whole incurable, stage IV cancer game …

Ah hi @TopOfTheCliff how ya doing? waves

I see you’re on cape too and FEET have been mentioned hmmm how are you finding it?

@FairyWren7 and @Whattodotomorrow good luck for your surgeries today. I can't contribute anything about implants or diep, but I can sympathise with not knowing what's going to happen, It's horrible feeling out of control of things.

Sorry @mowly77 things seem to be against you, I'm not quite sure what I'd do in the situation. We had to claim on insurance earlier in the year, but it was DD's manky tonsil rather than anything to do with me, and it wasn't much more back than I paid for the insurance in the first place, I guess if you go and if you start to feel worse you could cut it short. What a crap situation.

@FairyWren7 it's awful when you're going into something like that and it doesn't feel like you have a clear plan. I had similar with brachy and found it really distressing - my consultant flippantly mentioned she'd have to find out if I could have it or not due to the then very recent DVT then radio silence. The lack of procedure would have cut my chances of success in half so was very anxiety inducing.

Wishing you best of luck with the surgery today and a speedy and hassle free recovery.

Thinking of you Fairy.

@FairyWren7 @Whattodotomorrow wishing you both well with your surgeries today 💐

@FairyWren7 @Whattodotomorrow Sending all good vibes and thinking of you both. 💐

@mowly77 how lovely to see you again. I’m sorry you’re in such a bind. Like the others I am all for taking risks and saying eff it whenever possible these days. But it really comes down to how well you feel, I’d probably go if I thought I’d manage. Glad to hear you got away with your DD in April!

@Whattodotomorrow just seen you are under the knife today too. Good luck and hope all goes well.