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

[LemonDrizzle10]

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@JlL2013 Fully empathise. It will be a hard few weeks. I am a professional in doom thinking. Try to hang in there. You don't know until you know. But, certainly get the nurse to chase up results and make sure you are not left hanging unnecessarily. 3 weeks is quite a long time if you are worrying. It might be worth asking, just in case, if it can be brought a bit forward. Maybe not possible, but might be worth asking, in case there is a cancellation.

@JlL2013 - I'm sorry to hear where you find yourself. The fear of recurrence is so hard, and I will keep my fingers crossed you're wrong.

To share some good news, DD1 got her A level results this morning and did really well and is off to her first choice uni. I am so pleased for her - it's been a tough 6th form experience for all of them, with lots of disruption but no allowances made for that in the marking. And of course, it's been particularly hard for her as I was diagnosed just as she was going into Y13. GCSE results for DD2 next week!

Thanks @isaxx and @dotty2. I feel loads calmer today, I think I just worked myself into such a state yesterday about it.

@dotty2 that's amazing news about your daughter, you must be chuffed to bits.

Don’t borrow tomorrow’s worries…you end up worrying twice @JlL2013
I probably read that on here. Try not to worry until it’s actually worth worrying about. Difficult I know, I’m also an expert worrier - they should do A levels in it.

@LemonDrizzle10 that's a good saying, and very true!

@JlL2013 glad to see you're feeling calmer today.

I was tired last night, very tired 💤 went to bed very early & felt much better this morning though. Think I might head up early again today.

I've been out for lunch with my dad this afternoon (tomato and brie soup - very tasty & fancy finding a recipe myself now 😋), and finished all barring the yellow Colour Monster. Out of four part balls of yarn (might have been three), none were quite enough for the same size as the others, so I need to acquire some from somewhere.

I might start cutting felt tonight for my Hansel and Gretel story apron. Just need to decide whether to do a second set of painted dolls for it, or use the weird bendy ones 🤔

@lucysmam your crafty inventiveness never ceases to amaze me! Can’t wait to see updates on the Hansel and Gretel apron!

Well I got myself in a right muddle this morning. I went to take the last five pills in the course of cape and they had vanished. I hunted around and decided I must have taken a double dose last night. I searched in the bin for the foil wrappers and eventually found the five missing pills! Hooray that is five courses done! Now I get a two week break to allow my trip to France. I’m a bit anxious about how I will cope but looking forward to a mini adventure. It all helps to distract me from thinking about my aching shoulder. Allons-y!

Have a wonderful time @TopOfTheCliff - bring us all a croissant back.

Thanks @Florabritannica . I'm looking forward to the apron too - I've never seen or made anything like it before. It could all go a bit wrong though - I stuck together an apron pattern last night, wrongly 🙄, then realised I could have used my apron which is probably a better shape anyway!

@TopOfTheCliff have a fabulous break, we definitely need some photos.

Have a lovely holiday @TopOfTheCliff . You so deserve it!

@LemonDrizzle10 that is such good advice. I'll stick with it.

My accountant told me today that you are where you are and you can't change it.

Thanks all, you've talked me off the edge.

Hi all, I'm feeling a darn sight better than the other day! My lovely mil came over and advocated for me very well. I'm in the Christie at the moment, but I'm going home tomorrow with a picc line which they placed today because the antibiotics are destroying my veins,

and the Christie hospital at home are coming to my house for iv antibiotics and I'm got to attend clinic 3 x a week so they can check the wound.

Very surprised they agreed to it but I'm a dr and I hate being in hospital. I've had some really lovely gifts from friends but being in hospital is not fun and I cannot sleep at all.

@TopOfTheCliff enjoy France!

Found out this week that my surgery for Primary Peritneal Cancer is next Tuesday. (I only keep saying the name of the cancer because I think most of you have breast cancer - so not to cause confusion).

I have bought the shorter nighties and big pants. And will get a power bank for charging my phone.

Just wondered if there were any good suggestions to take in to hospital. Think I’ll be in 4 days.

@CoachBeardsJane really glad you’re well enough to be out of hospital. X

@RedRosesPinkLilies I'm debating getting one of these that was linked up thread. I'm particularly concerned about sleep in hospital so I think this might help.

https://www.snoozeband.co.uk/?gad=1&gclid=CjwKCAjw5_GmBhBIEiwA5QSMxAKRs89gvb0pYHEgOnQrBr_-INipGrdqCYLh0F-9IPAKLiJ9t1rrtxoCP20QAvD_BwE

Good morning all. I have a very trivial question. By the time I thought about microblading my eyebrows I was about to go on holiday and chemo began immediately after. My breast cancer nurse said it would be ok to do it when I got back as long as I went somewhere that was scrupulous about hygiene.
However the place I contacted said fuck that, we won’t microblade after the start of chemo.
Do I find somewhere else and lie (DH’S recommendation) or suck it up?

@Florabritannica I'd normally be on your DH's side - I'm very much a "suck it and see" kind of person. However, I don't think I'd risk it now. My right eyebrow and lashes are thinning out quite a bit, left side, less so at the moment 🤷‍♀️ I didn't get chance before chemo to look into anything (literally got a phone call saying they needed to get something going to stop the cancer ambush, RIGHT NOW,). I'm hoping they grow back fairly quickly since they're short hairs & the stuff on my head's still growing.

@RedRosesPinkLilies definitely invest in an eye mask - even lights out time isn't quiet and dark, in hospital. Take headphones too if you fancy music.

@CoachBeardsJane good to see you've improved & can go home.

Chemo 14/18 today for me. I think I've hit the point of had enough now. I really don't want to go up and get dressed (but I will). Should start counting down the post-chemo treat of dinner out with the girls, rather than the chemo itself maybe 🤔

@Crimsonbow they do look interesting- I’m also worried about sleeping in hospital. I guess they could be good even if you can’t sleep and just want to lie there and rest.
Actually having cancer is expensive! I’ve bought new elasticated trousers because my old ones don’t fit. New nighties, all sorts of things!

If you're worried about noise in hospital the best earplugs I've ever found are Howard Leight laser lite. They're fairly comfortable and you don't hear anything. Not even the distressed elderly lady, of which there was indeed one on my bay when I was in last.

@MyNamesGaryAndImAddictedToChips
Thank you x

Glad you are feeling better @CoachBeardsJane I'm having my picc line put in on Monday, how did yours go? I think the process sounds worse than it actually will be...

Good morning everyone
I have read through posts and wish to congratulate the A level resulters and wish those going for surgery, chemo and rads the very best.

I managed to slip off the consultants radar for a while and I was loving the medical break. I started Enhertu in May for mets breast cancer. Ive mets in all bones of my spine, skull base and other places I cant remember and some liver mets.

The bones respond v well and have been non active since treatment started. I had x2 loads of rads to all my spine + anti her2 meds + hormone blockers. It took abt 9 months to get the cancer dormant and its stayed that way for 3.5 years.

Liver has been bothersome on ocassion with small growth of existing tumours here and there so treatment changes necessary. Im now on enhertu and v v lucky to get it as its only offered to her2+++. Its a harsh drug but Im cracking on.

Anyway...I havent been seen by a consultant since I started enhertu. My current onc called me end of June and checked I was ok. I am closely monitored with bloods every 18 days so having no cons and no scans booked feels like a medical holiday.

Because either of the kadcyla I was on or due to liver progression my bilirubin was high in April so I missed a dose of Kadcyla which meant 6 weeks with no treatment and potentially pogression. My bili returned to normal after 1 dose of enhertu, my appetite is better.

I was worried Id be scanned too soon on enhertu but Ive had 5 doses now so when I am scanned its had chance to work on new progression compared with my April scan.

Whilst cruising in the chemo suite 2 weeks ago I mentioned my denusomab for my bones was due. It hadnt been prescribed so they contacted the consultant and before I could have a cuppa the text arrived with a face to face appointment. Ive not had scans so they only have bloods and me to go on but 100% Ill be scanned soon. My bones feel 'quiet' as always. My liver also feels 'quiet'. No tenderness, light coloured pee and good appetite. My mind thinks if my liver was failing Id know 3 months down the line..

Holiday saga
I ended up not going to Wales because the consultant appt also triggered an echo which was due and I am having it today. Im not nervous because the caridiologist told me most failure starts within a year, not 3.5 years.
Its raining, the weather isnt looking great and I have booked lunch with a friend.

My husband told me my friend S didnt go either when she heard I wasnt going so my suspicion of being a companion may have been correct and that in itself was too much expectation.

Thank you again for all your advice

@Greyandrare123 it sounds as though you have reached a nice calm place. May the stability last a long time!

Maybe we should have hospital bingo. What would you look out for?

1 Delayed admission as bed/chair not ready yet
2 Nurse can't find records
3 Doctor hasn't written up drug
4 Vein/PIC/Port not cooperating can't get venous access
5 drug late coming up from pharmacy
6 no food on trolley today
7 reaction to drugs
8 unexpected admission to to complications
9 shouty distressed old person nearby
10 nurse comes at 2am to wake you up for BP check

I am sure you can think of plenty more. Drugs not ready on discharge.

I am going to a funeral this morning of a good friend who died suddenly of sepsis at 70 despite being fit and well. Sobering when we are trying so hard to beat cancer. Then after a bit of life admin I'm off to the ferry. woo!

Ive been 100% fortunate in that Ive had no hospital admissions or visits to ED since diagnosis. God only knows how with all the chemo I get but somehow Ive avoided all other illnesses.
Options 1-10 are so stressful on the hospital bingo and you would get a full house in a day!

My only mishap has been accidently getting all my chemo infusion in 10 mins instead of 90mins..whhhoooo. that caused some low level dramatics but I felt fine and ended up spending too much money in the hospital clothes shop as I had to stay on site for 4 hours.

I’ve got my last radiotherapy treatment this morning. It’s celebratory cakes all round - Victoria sandwich, chocolate, lemon drizzle (obviously) and coffee and walnut.
Anyone fancy a slice?
I’ve brought some in for the nursing staff - they’re all lovely.

Dog has a UTI - that’s my next job today rather than drinking champagne which was plan A.

@LemonDrizzle10 I do like cake 😋 Lemon drizzle for me! How many sessions of radio have you had? Maybe you could still enjoy the champagne & celebrate later on? I hope your dog's ok.

We've decided on Cosmo for lunch. I am starving but want to nip to Poundland first before I forget about going, as is likely to happen today 🤣