Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Thank you for your responses re surgery. I’m trying to work out what to say to the surgeon before I see him. My preference would be to leave the mastectomy until after the holiday but chemo is meant to finish 31/8 and my week away is 15/10. Looking online it seems that 4-7 weeks post chemo is the best time to perform surgery. I am wondering whether they can delay one of my chemo’s for a week as they said it doesn’t impact the treatment in the grand scheme of things. Given my inflammatory response to my port this may be the best way to go. I doubt recovery will be straightforward and I’m loathe to miss out on a holiday with the DC’s for a second year.

Did anyone have to self isolate before surgery?

May start counting the calories from Monday to see what I’m consuming at the moment. I should it’s far too many!

@MrsPnut - your chemo/ port situation sounds bad. I didn’t realise that could happen with one. I hope it calms down for you.

I've not been around for while so I'll just say hello again everyone.

I'm now 5 weeks post lumpectomy and sentinel node removal. I then had a second operation just over a week ago as there wasn't a big enough clear margin after the first op. On top of that last weekend, I got an infection in some of the knots in the stitches from the original op round my nipple. I had to have the knots removed, it redressed and some antibiotics. Manky nipple is looking better but I'm feeling a bit battered. I've got an oncologist appointment next week to talk through radiotherapy so things are moving forward.

@JeanLannes - I had to isolate for a week before both operations. The first time the whole household had to isolate. The second time everyone else could go out if they wore a mask and kept away from other people. In reality, as we're in a Covid hotspot, everyone isolated for the three days after I'd had the Covid test

@JeanLannes I loosely isolated for 3 days pre-surgery. I didn't stay in the house (I never just stay in the house) just kept away from people. Dd was doing her yr 11 assessments so she just went to school as normal - I know she's sensible.

I am steadfastly keeping my one week of holiday free from appts even though it will mean a delay of a week or 2 in the new chemo. I think that will be for the best in any case though so my skin can recover from rads.

First couple of sessions were run by 2 young women which was nice. Then yesterday there were 2 boys - reckon I could be their grandma. I surprised myself by how much I did not like getting my kit off in front of them. Rads - you're a lot more exposed and wandering about. And they're not my drs or surgeons - feels like I just stripped off in an aisle of Tescos. [shocked]

@barkydog my deepest commiserations with your post-surgical woes. It is indeed very distressing to have manky boobs.

@Acinonyx2 I know what you mean about the male radiotherapists. I was surprised at how blasé I got about dropping my pants in front of young men. But they were all very, very kind and professional. Didn't even bat an eyelid the day I wore my disreputable knickers.
That reads really wrong but it's the gist of it. I'm concerned that my first impulse in any medical situation is now to take my knickers off.

Is it an age thing I wonder, I wouldnt think twice now about getting my knickers off now Im ancient !

I've discovered a new skill to put on my CV. Apparently I'm very good at holding my breath

The gods are testing me. I got up thinking I would go kayaking with my friend and found a driver has swiped my car and DHs van in the night and abandoned their car up the road. My car is undriveable with a broken wheel.
I am so fed up with all this. I try to stay resilient and upbeat but how much can a woman take? If this was fiction you would say it was overdone. Will fate please stop picking on me? Aargh.
Sending positive waves to all going through stuff. At least I’m not still having chemotherapy. That was worse.

@TopoftheCliff - I’m sorry to read that, how horrible. Has your husband’s van been found?
@HauntedDishcloth - that sounds better than I’d thought re: driving.min was imagining not being able to drive for 6 weeks.

I have a couple of weird questions:
I’m taking my dd for a short break to Northumberland next week and we’re going to do a little boat trip to spot puffins. Do you think my wig will fly off in the wind? A bit off topic, but if anyone knows the coast and area near to Morpeth, activity and eating tips gratefully received.
Also, has anyone heard of using calf fat for reconstruction. Relative to my average size, I have massive calves with plenty of fat and extraneous skin. I presume they wouldn’t because I’ve not read anything about it.

@Lunificent if they used calf tissue would you end up with hairy boobs?

@Lunificent The puffin trip sounds lovely! To prevent your wig coming off in the wind, you could try wearing a hat on top. A baseball cap style would be good as you can usually adjust the tightness. Or a baker boy style which come down very far at the back with elastic. The most foolproof would be a hat with a tie under the chin. You could roughly sew a scarf inside if you have suitable ones. You can also get lightweight beanies which you could wear without a wig or headscarves that tie at the back of the neck - they don't have brims so wouldn't catch the wind. I wore a beanie on a windy beach no problem. I also have a headscarf which is elasticated at the back and has ties so that is very secure.

@KitBot I have read about a lady having had hairy reconstructed boobs from a DIEP as she had hairs on her skin below the navel that was used.

Fuming on your behalf @TopOfTheCliff Hope Karma catches up the culprits.

@Acinonyx I had my rad planning appt yesterday so was also doing the breath-holding thing. My actual sessions start a week Monday & I'm having the compressed course of five Mon-Fri. Fingers crossed your skin holds up ok after all its been through.

@ Kitbot - that’s so true. I would look furry!
@Haunteddishcloth - thanks for the tips.

@TopOfTheCliff you really are being tested. Let's hope you can at least get a better car out of the whole deal.

@Lunificent My favourite spot up there is Bamburgh Castle - but it's a bit further north. Not sure if the Marsden Grotto (pub in a cave) is still open at Marsden Rock. In land over the moors and up over to Kielder is nice. My favourite village over there is Blanchland. What sort of thing are you looking for? Not sure if the Farne Islands are opening up.

I wear a hat if it's windy - wouldn't trust a wig. You will need it held down in some way on the boat. Maybe a headscarf would work?

@HauntedDishcloth I shall still be going that week - we can be rads buddies.

@TopOfTheCliff I'm so sorry to read your news, what a dreadful thing to happen on top of everything else, another kicking when you're down.

@Lunificent I think for maximum security I would go for a headscarf tied under the chin, a bit Thelma and Louise but safe. I had a close shave (if you'll pardon the pun) with my hat this morning. I was talking to a close friend and neighbour and was wearing the wide brimmed sunhat my mother has given me as I was on my way to see her. It is a bit breezy here and I felt it lifting off omg but managed to catch it in time! The thought of her seeing my poor bald head is too awful! Was it you @Acinonyx2 whose hat blew off when out with a friend in the winter? It reminded me of that.

I have felt so self conscious about my head around friends and neighbours and up until today have worn a ready-constructed turban or scarf. I certainly felt less exposed with a everyday sunhat (providing it stays on) rather than 'chemo' head wear.

I saw the oncologist on Wednesday who wants to biopsy the nodule on my liver ligament. He said it is strange that my post surgery/chemo CT scan is clear apart from this. I feel very upset as this was the point where I was expecting to get a small reprieve from hospitals, I feel I never get a break from any of it and I am never 'done'. If the biopsy proves positive I will have to see a liver specialist in London. The HRD test on my ovary was 'inconclusive' so they are running it again with a new sample. The outcome will affect my maintenance - if positive I will get an infusion as well as tablets, if negative, just the tablets. Other ladies with OC, were you offered the HRD test?

@FizzyOrange more testing - how very, very, tedious. This is probably very unhelpful but I have found it helpful to just never think about being 'done' as the goal posts keep changing (or even rearing up out of nowhere...). I do like short respites though - even if it's just a day.

Yes, my hat got caught in a thorny tree [shocked] and I had to faff about getting it unsnagged while friend watched Way more mortifying than getting my knockers out.

I have 2 friends now on the final countdown which helps to keep my perspective in control. So this morning I found myself musing that here I was, perusing the supermarket shelves, alive and all. That's as sunny and positive as I get.

I'm not more depressed than I was before - maybe even - as though life has come to meet me where I am. Problem is more worry - worry about being really sick, worry about dd. Dh took dd and friends out for her bday while I took the bus to hospital for rads, came home and had soup. Kind of sums up the last year really.

@Acinonyx2 I like your lugubrious approach. It is all shit and will go on being shit so if there is a relatively good day amongst all the bad ones let’s try to enjoy it. We are all going to die in the end anyway. Instead of trying to be positive and cheerful despite all the ridiculous disasters I should expect everything to be bad. The allotment is a case in point. The slugs have eaten all my beans and the caterpillars my cabbages. It is just a bonus that the courgettes are growing and the strawberries and currants have evaded the birds so far. But it won’t last.
I am reading a fabulously gloomy book about rain in Scotland called Summer Water which suits my mood.

@FizzyOrange I know just what you mean about yet more tests. Give us a break for heavens sake. Fingers crossed it is all incidental and unrelated to the OC.

Cars are being processed. The garage is going to take ours away on Monday for fixing while the Police towed away the crashed abandoned one. The insurers seem positive and will let me have a hire car next week. I am happy enough to lie low at home for now. I think I should just stay in bed to avoid trouble.

Regards to all. Enjoy the sun!
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Hi all! Been a while but have been thinking about you all and have just had a very quick catch up.

I've also wondered about Otter - still no word? And @Littlestelephant? We were due pathology results around the same time and I know hers were delayed...

@Acinonyx2 Well done on the breath holding! I'm also finding I'm rather proud of myself for getting the hang of the snorkel. What day are you on now? I've had 9 of 19 (will be 15 plus a four-day boost) and so far no major reaction. Maybe a little itchy around my collarbone? Had to laugh about how blase we get about taking our kit off in front of a constant rotation of young doctors!

How's the Kadcyla going for you? I don't think I'm having any major effects, although my period did return for the first time in months and was a real beast - hoping this will just have been a one-off.

Hugs to all, and everything crossed for those waiting for news.

Sending happiness and hugs to everyone.

Any tips for coping with or soothing a very, very sore bottom? Diarrhoea and constipation, bottom is burning and bleeding. (I have daily anti coagulant injections so when it bleeds it really bleeds). Stomach cramps are also painful.

They can't prescribe anything as one would interfere with the other and I can't have anything "natural" as it interferes with chemotherapy. It's got to a point where I'm terrified to go to the toilet or to eat.

Am on 3 different prescriptions for nausea.

@TopOfTheCliff I fear I may be leading you astray into gloomy pastures. But this is a terrible year for slugs and snails. It's all that cool wet weather we've had. They've decimated parts of my garden. But gardening is always a war zone.

Indeed death and taxes come to us al. I feel increasingly that death is incredibly ordinary and commonplace. I have my own way of making peace with it. I don't want to be cremated - I want to become plants and trees and bugs - not air.

And in the meantime there are a few things to be done.

@backformore I'm down 4, 11 to go (my boosters are included). I feel a bit sea sick after sessions. Boob not too sore just yet touch wood.

Only had one Kadcyla - just sick the next day then got better - but the neuropathy is just fading now so I think that might be an issue for me.

@Happy36 that sounds really ghastly! I assume you've talked to your drs and asked what can be done? Do they really realise how bad this is? I swear by sudocream for just about everything. Perhaps your diet can be adjusted? I've forgotten what your diagnosis/treatment is - can you remind me?

@Happy36 I would recommend metanium nappy cream. Used extensively in my career as a paediatric nurse and Health Visitor. Soothes the most excoriated wee bottoms.
Realise I have not been around for w while just don't feel able to post about myself just now but I cheer you all on from the sidelines.

@Happy36 I was also going to suggest sudocrem. It does burn a bit when you first put it on but I have found it very soothing for bleeding haemorrhoids.

@Happy36 Please don’t use sudocrem or metanium nappy cream until you have finished radiotherapy because they can cause extra radiation burns. Is the cause of the sore bottom the diarrhoea? In which case I would get some cavilon wipes or medihoney barrier cream.

@Happy36 I used anusol suppositories during the worst of the chemo side effects. I was on Fragmin injections after I broke my ankle so I recognise the pattern. I think loose stools were less painful to pass so kept it sloppy Sending sympathy.

@Acinonyx2 I agree about being composted into something useful. In a minute I shall get up and do some gentle gardening. The wisteria is falling off the wall into the hot tub and needs intervention. I’m not leaving the premises today. What I do know is that I have reached my limit and need to process the crap to avoid exploding like a volcano over poor DH. I might ring Macmillan for a chat.
Cancer, chemo surgery and radiotherapy, broken leg, death of dad, falling overboard and now car written off. I haven’t written about a serious issue with my DD either. I know my famed resilience will kick in and I will bounce back but right now I want to wallow. I quite fancy ice cream for breakfast with pancakes So it shall be.
Enjoy the sun folks.
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@TopOfTheCliff Everyone has limits - even tigerrr Once you have a number of really big problems - you fall completely when there are smaller ones.

Would it be nice if some of us could meet up? Timing might be a bit rubbish I suppose.