Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

@InOtterNews so happy for you. 💕

Welcome newbies to the journey.

Not a lot to say, spoke to mum and dad who are not dealing with it very well at all. 😞

@InOtterNews I am so delighted for you. ❤️❤️❤️

Congratulations @InOtterNews! So wonderful to hear some positive news!

I finally have my ECG tomorrow. Can anyone tell me what to expect? Communication from the hospital has been pretty poor and I haven't had a letter or anything.

@AlbertCampion ECG is pretty straightforward. They put maybe a dozen stickers over your body - mainly upper body (a couple on your ankles) which they then clip wires (electrodes) to the stickers. They're checking for any irregularity in your heart. I had several over treatment as chemo was strong so they had to keep checking that my body was coping. I takes maybe 5 mins

AlbertCampion an ECG is so easy I had one at my pre op. Mine was done by a lead nurse.
I took my top half of clothes off there is a gown to cover you. To make it easy don't wear socks or tights
otherwise they need to be removed.
They fix wires to your pulse areas with sticky pads. Press the button and a print out is then available.
Mine was done in 10 minutes and most of that was chatting to the nurse.
Hope this helps.

inotternews so happy for you! 🎉🍾

Ok, sorry, being a complete idiot and typed the wrong thing. Am actually having my echo tomorrow - have already done ECG. Sorry - doing too many things at once and getting in a dither. Any advice on an echo?

@MollyButton

Congratulations *@InOtterNews*!

I've got to be at the hospital at 7:15 tomorrow - my poor daughter, its 1 1/2 hours drive to get there.
I'm really hoping the beds are a fraction wider than the rest of the beds in that hospital, or I just won't be able to sleep. i've packed 3 books, one very light, one easyish and one incase I get bored. I remembered phone charger, and just need to get the toiletries. Oh and need to pack the heavy present before I go to bed.

Best of luck @MollyButton, I’ll be thinking of you!

@InOtterNews What fantastic news x

Otter that’s wonderful!!

Also @BitOfFun - how are things?

@InOtterNews Wonderful news - made me laugh out loud over here, so very happy for you!

@Noidea2114 My (initial) diagnosis was quite similar to yours - 4 or 5 mm lump, and lymph nodes looked fine on ultrasound. I did get an MRI, though, probably mainly because I'm treated privately and it was easily available, and that made them realise that the lump was a bit bigger than initially thought, 12mm in total. However, it didn't change the plans in any way, so I would not worry too much about not having it.
A few things you might want to ask: Are they also doing a Sentinel Node Biopsy at the same time as the lumpectomy? If so, will they inject a special dye before the surgery? And will they do the node biopsy through the same incision as your lumpectomy, or will there be two incisions? And finally, will they place a wire in the lump before the lumpectomy? (Often called wire guided excision)? None of these procedures are particularly scary, but best if you know about then before you arrive at the hospital. The guide wire thing threw me a bit on the day of surgery as I hadn't really taken in that little detail in the pre op meeting.
Also, have they explained about margins, and what happens if margins are not clear or if a lymph node is cancerous in the biopsy?

Sorry if that was a lot of jargon, and happy to explain any of it if needed. We're all here to help you make sense of things if that helps.

Hey great news @InOtterNews! Happy Christmas 🎄💐🍾

I'm fine, thanks, @iVampire . I did have some work done by the maxilla-facial consultant a couple of days ago. Luckily, I'd assumed the appointment was for fitting me for a partial denture for the five teeth I lost (when I had osteonecrosis of the jaw around 12 month months ago), otherwise I'd have been fretting beforehand. As it was, the doctor pulled out bits of my jawbone that were rotted, filed the rough bits of my exposed bone that were irritating my tongue, and sewed up the gum . I don't mind telling you that it was extremely gory and unpleasant- I took a photo of the biggest piece he removed: a 4cm length of the tooth bed, but I'd probably better not post it here .

I'm on antibiotics over Christmas, but he took mercy on me and just prescribed penicillin instead of metronidazole as well, so I'll still be able to have a drink. I've got a pretty disgusting taste in my mouth tonight, which might be connected to my disturbing the wound a little when I vomited earlier after the dog did a fart so foul that I doused myself in perfume, then DH squirted air freshener everywhere- I just couldn't take the combination .

But yeah, basically fine .

How one’s view of stable/acceptable/normal changes!

Sounds like more alcohol might be in order? Purely medicinal of course and just to keep the wounds clean

Omg @BitOfFun that sounds horrendous. Hope the taste thing gets better and you can enjoy Christmas a bit. x

@BitOfFun I often wistfully think how lovely it would be to have a dog, you've given me pause for thought here
The jaw work sounds full on, amazing work getting through that!! Hope everything heals up super quickly. And very pleased to hear you can still have a drink! Cheers and Happy Christmas! Xx

Hello. Just come on for a bit of a rant. Went to my echo which is at a separate hospital department with its own car park. (Wouldn't have known this had I not asked when confirming the appt yesterday - no paperwork to tell me). I had been told to wait in my car and call a number to let them know I am there. I did so and the nurse said "Barry would come out". This is normal procedure at my GP, as they don't like people waiting inside, so I thought nothing of it. I waited... and waited. Finally saw someone else let in so put my head round the door and the nurse was incredibly arsey and said they'd been waiting for me. So I go through and Barry is polite but clearly pissed off at being kept waiting. I tried to explain but they ignored me. Finished echo and asked what to do about parking as it is ANPR with no paying machine and he said I should have been given a form a reception to fill in but as I wasn't I would have to chance it as they have a one way system. Go back to car to find back drivers' side tyre is completely flat. Call DH and he finds an industrial estate on Google with possible tyre places. Drive past three which are closed with other drivers honking and swearing at me for going slowly, before finding one open who can help thank god. Now standing outside in freezing cold for half an hour in the middle of now where waiting for it to be fixed. Getting DH to phone hospital to try to sort ANPR cos with my luck I will get a ticket. Want to cry!

@BitOfFun I am at your jawbone antics- how horrendous. I am not a dog person and you have reinforced my view.

@AlbertCampion what a trying time! I hate it when the system starts to malfunction and the staff blame you for it. No it’s not my fault it’s your stupid procedures! I might be tempted to whack in a complaint just to feel more in control. Especially as the ANPR system will be run by an outside agency and won’t listen to extenuating reasons. Hope the echo was okay. Mine is now a month overdue!

@Icantfindanewname welcome to the house of fun! You’ve already done the hardest bit. Tell me about your lymph node clearance has it been straightforward? I’m on day 4 now and draining lymph freely still with a numb arm and shoulder. Did you have to home school your kids all through treatment? That must have been hard.

Best wishes to all. I am tucked up on the sofa with radio 4 and a mince pie and coffee. Life isn’t too bad really.
Top

Thanks @TopOfTheCliff. I think after a Christmas I might write to PALS about it because it is quite a stressful thing to experience for people who are already under a great deal of stress. It would be so easy to make it better, too!

Home and have had a coffee so calmed down. Hope everyone has a lovely and stress-free Christmas! xx

@AlbertCampion glad to hear you're home, what a nightmare, may you have a calm and cosy rest of day.

Just saying hello from the Christmas chemo ward here, I've just had my mega piriton dose so a nap won't be far off!

@BitOfFun that sounds horrendous, hope you are feeling more comfortable now and resting well at home xxx

@AlbertCampion you poor thing, I would have definitely been crying in the freezing cold, not just thinking about it. So far for me, one of the worst parts of all has been the shitty attitude of a few nurses and receptionists. It all just makes me feel so defeated and vulnerable. Surely, if you work in healthcare and you can't show compassion to a cancer patient you are in the wrong job. Pleased you got the ECG out of the way and hope you can relax a bit now you're home xxx

The saga with my itchy rash on my legs grumbles on. The cream and antibiotics from A and E have done nothing and my legs are worse than ever. I feel as though I am making a huge fuss over next to nothing but I have had virtually no sleep for 12 nights with it now. I spoke to a new GP this surgery. I had requested my usual GP but he probably wasn't up to me moaning this morning lol. Anyway, she wanted pictures sent over and phoned me back. She has prescribed some new cream which my son in law is collecting for me now. It is all very puzzling, I have never had any skin conditions and now to have this on top of everything else is just so wearing.

@TopOfTheCliff
Just popping back to lol at 'Welcome to the House of Fun'! John Diamond, Nigella's husband, said the same when he checked into hospital before gruesome surgery. (Won't go into details.) There was a choir singing carols round the Xmas tree in the foyer. He asked if they did requests, because if they did....

@Bloodybridget So sorry about the chemo. I used to think about Pacman whizzing round my blood stream, chomping away at alien intruders. Hope DP is more mobile now.

@Starmer RE Capecetine side effects piling up, have you had any vertigo? Weirdly, I've had two episodes since stopping chemo. Never had it before but have never been good on boats or swings. Wondered if the baby hairs in my ears have been affected.

Love to everyone else. Nearly time for King's Carols. In my more radical days, I used to make mince pies accompanied by Sympathy for the Devil 'for balance'.

Ah, I just love the sense of humour on this thread ❤️😂. Merry Christmas one and all!

@kentishMama thanks for that info. I do know I will be having the dye put in didn't take anything else in.
Too late to ask now as my nurse is not in until Tuesday. I'm sure I find out on the day.