Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

I honestly don't know hippie

They are all being very tight lipped but chorioid melanoma hasn't been mentioned...mind you, neither has anything else!!

I'm making a complaint to the opticians who handled the referral - consultant ssus I should NOT have had new specs until the fluid has dispersed! Over £300!!
Grrre.

CointreauVersial, is it your brachytherapy today?
If so, I'm sure you'll be fine as it is definitely a much less sinister version than the ones I had.
Hope you can get the dressings off soon Nonotmenori, and be more comfortable.
I have The fear today, as I have a consultant appointment this afternoon. It's just a review as it's three months since I last saw him, but that doesn't help of course.
Good wishes to all going through the mill at the moment x

skap Oxybutynin but it is not really doing much good. When I had my 1st flexible Cystoscopy 17/11/18 and wide awake, bladder was pumped full of liquid to smooth out the inner wrinkles so clearer to see the nasty bits inside with the tiny mirror. This time I was under GA so was not aware but think they must have done the same thing judging by the gushing waterfalls that followed after I woke up.
I was hoping this would not happen but expected some problems.
It is the nature of my particular beast.
I was told they saw no cancer anymore after the Radiotherapy which did finish 6 months ago but to make sure took several biopsies where it used to be so expect there may be recurring very early stages of it.
Due to my various heart problems diagnosed in 2007 then 2016 I was sent home 3 times, but not this time and although Chemo was part of my therapy I refused and the team agreed.

I hope you get the OK from your cardiologist re the Herceptin.

OH shit! I have got a letter in the post just now with an appt on 26th Feb. to see the urologist. That is quick and I am now shaking.
Must contact DD to see why the urgency/

@Skap they gave me extra ones to put on top of these if they become lose. It's just so uncomfortable.

@Hippiechick162 I've swollen right up. My face hands stomach. The constipated is unreal. Last night I though my stitches would burst I was so bloated. Managed to go this morning and now I've bought laxatives. It's all bullshit. I want it all over with and it's only just began 😭

Oh @Nonotmenori that sounds positively awful! Which one was it you had done? My surgeon told me to start eating bran and dried fruit now in preparation because the anesthetic literally slows everything!

@yoikes I'm not very good at not being told anything. I'd be stamping my feet and shouting very loudly right now. As hard as it is you need to advocate for you xxx

Hi @redspook - yes, the first brachytherapy was today. It was at an unfamiliar hospital (Royal Surrey, Guildford) and super-early, so I left loads of time to get there - still arrived with a splitting headache after stressing about traffic, parking etc. I never got the official letter so wasn't sure where to go. My "usual" hospital, East Surrey, has a huge, half-empty FREE carpark for radiotherapy - no such luck at Guildford.

The actual treatment was OK, just a bit icky having this big applicator clamped inside me for a CT scan, then they slid me onto a trolley and wheeled me down the corridor with it still in place, and into a treatment room. The actual radioactive source is tiny, and arrives via a thin tube; I just lay there snoozing for six minutes or so, then a nurse came in and took everything out. Phew. Staff were super-nice, and helped me relax.

I told work I wasn't coming in today (although I probably could have done), so I've had a nice afternoon on the sofa.

Then, on Monday, back again for the second brachytherapy, then I'm done. D-O-N-E....DONE. Four months of tests, diagnosis, hysterectomy, recovery and radiotherapy DONE.

@Hippiechick162 I had wire guided partial excision of breast.
Biopsy of sentinel lymph node Unilateral operation. That's what's it says on my discharge papers

hippie
I'm so fed up :( it's just test after test atm..
But tbh the hospital appts have all come through so quickly I can't really complain.
The dye they will use next week will turn me yellow!! If I look totally ridiculous I'll post a photo :)
It's the waiting that's hard :(

Ouch sounds delightful @Nonotmenori! I'm booked in for double mastectomy and reconstruction via diep surgery on 27th. Part happy, part scared. Just too much in there to do lumpectomy . Try some gentle laxative and plenty of water for your bloating. Wishing you luck lovely.

Oooh @yoikes I'll swap apparently the dye I'm having will turn me blue. Will have to swap ridiculous pics lol! Trying to find the funny side in stuff helps me, sorry if I cause any offence I don't mean to but if I don't laugh I'll cry. Here's hoping the barrage of appointments will turn up the answer

xx

Hippie No offence taken!!! 😂
I told dh I was worried I'd look like an oompa lumpa!! He helpfully pointed out that they are orange, and I'll probably look more like a minion 🙄😂
Blue???
Hmmm. Bit braveheart?
"You'll neveeeeer take oooor freedoooom!"
🛡🗡⚔

Loving the minions and Braveheart references.
I saw the consultant this afternoon, and although he was very reassuring and confirmed that I don't need any more treatment right now, he isn't able to confirm that the cancer has gone (yet). The CT and MRI scans I had at the beginning of December showed "significant shrinkage" of the main tumour, but it's still there. He expects it to continue to shrink, and I will have another MRI in about a month.
He made sure that he told me that the current situation is reassuring, and that I have responded very well to treatment.
I don't know how to feel at the moment - it's like I have a dormant volcano inside me and I won't know if it's started to erupt again.
Keep going Notmenori, I really hope everything improves for you soon.
Good stuff Cointreau, I'm really pleased to hear that the brachy wasn't too bad and that the end really is in sight for you.

@Hippiechick162 my boob is blue too. Mainly around my nipple. I look and feel like a sack of potatoes. Actually I reckon the potatoes look better!

I've drank prune juice and it's easing finally. Please ladies stock up just in case. I did not know about any of this and it's been pure torture.

I'll be thinking of you. I get my results next Friday. I'm praying I'm not needing chemo and still need to know the result of HER 2. I'm not holding my breath on anything anymore. I'm just going with whatever I'm told now.

Best of luck @redspook I'll keep all crossed for you xx

Gosh such a lot going on at the Patience atm - can't catch up properly now but just wanted to say @redspook I'm sorry you didn't get the all clear, that's disappointing and of course it's anxious-making. @CointreauVersial how brilliant it will be to finish treatment! And sending commiserations/crossed fingers etc to @yoikes , @digerd, @Nonotmenori, @Hippiechick162 and everyone else who's having a hard time. @BitOfFun how are you, any news from the maxillofacial person?

Morning shift at The Patience Inn .
Well that’s paclitaxel finished I just have to climb the hill of doom and tears this week and then start building my strength towards the mastectomy in March .
I have to go back to the unit every three weeks until November for Herceptin injections so it wasn’t goodbye to the amazing staff but still a little emotional.

I took a basket of nice handmade soaps and balms in for them to divvy up .
Heart scan should be this month at local hospital as March is stupidly busy with pre op in Manchester ( I live off shore so have to fly over to England for anything major ) then a long weekend in S Wales for a festival followed by mastectomy and diep reconstruction on 17th March returning home around end of month.
Oh and Picc line is out ... total anti-climax as I was expecting it to be more traumatic but it was smooth as silk and very quick . I can have a shower without using the limbo cover !
My brain has been totally fuzzier these last few weeks but I want you to know that without you lovely lot I would have felt much worse .
Those who are have blue dye injection be aware that it turns your wee the most amazing colour !

@Trumpton you have a long ride with treatment. Great that you have the picc line out. That was a lovely, thoughtful present for the nurses. Hope the coming week isn't too grim.

@Trumpton hurray for reaching the end. I am at the speed of PICC line removal, they made me wait three weeks! I have my herceptin at a Lloyds pharmacy. They have a little clinic where they do herceptin and other similar things.A bit of NHS privatisation. I was reluctant at first but had my arm twisted by the very, very overworked and understaffed nurses on the chemo ward. I'm glad now because frankly I never want to set foot in there again.

For those on here who don't know what Herceptin is. It's a cancer drug which targets HER2+ cancer. It's a bit of a miracle drug and has improved the survival rate of HER2+ breast cancers dramatically, which is why those of us on herceptin are always worried in case it has to be stopped.

@Nonotmenori I never thought to warn you about the constipation, when I was in hospital they went round asking if anyone needed laxatives. I drink prune juice by the gallon at the best of times so needed something stronger. Have they not even hinted about chemo? If you find you are HER2 positive it's almost inevitable they will give you chemo and herceptin. This is because in the UK herceptin is only licensed for use with chemo. Fingers crossed it will just be radiotherapy.

@redspook all positive stuff from your consultant but I am starting to realise why the end of active treatment sparks The Fear in so many people.

@Nonotmenori...maybe we should start channelling inner avatars lol! They couldn't find any receptors in my biopsies so looking like triple negative (not that I know what that means). The only thing I know is that I have 2 types of cancer and they are removing the breast in total. Then they will plan after that. Think I'll heed your warning and start high fibre and plenty of water in preparation. Thinking of you

@Trumpton that's quite the journey ahead. Where in Manchester are you heading? I'm now at wythenshawe, my surgeon is a lady and is lovely. Scheduled for mastectomy and diep on 27th February. You have been an amazing support to me. It's nice to be able to talk to people that understand and don't tell me to remain positive, just being honest and hearing real advice is so helpful. Thank you so much. Always here if you need anything

Xx

Trumpton. 🥂🎈on finishing the chemo. That an important milestone. I will certainly be thinking of you on March 17th as that is the one year anniversary of my surgery.

Skap. Your explanation of the reasons for Herceptin and the regime of treatment around it is important. When I was told that my cancer was Oestrogen and Her-2 receptive I was told about the hormone suppressing drugs I would get but no one explained that because of Herceptin I would also have chemo. To hear about that was a big shock and it wasn't until weeks later that I understood that it was not that I needed chemo but because of the licensing. (To be fair, in the deluge of information the oncologist rattled through it may have been mentioned but I think I only heard the bit about hair loss!!). To be honest this place has been a very important source of information as well as superb support from people who know what it all feels like.

@ Hippiechick162
We have the same surgeon !
She is lovely . I met her in October but then my op was put off until March as I am HER2+ so needed chemotherapy first . I am due to see her again on 2nd March I wonder if you will still be an in patient ?

@Skap I was told I could leave line in if I wanted but they were happy to take out then and there .
I am quite pleased to be able to go back every three weeks for Herceptin injections . I don’t think I would be happy with any of our pharmacies doing it bearing in mind what a mess they make with prescriptions!
And they are such a great team at the oncology unit I am happy to stay with them .
Just been out for brunch and was given a complimentary glass of Prosecco to celebrate . Aww !

@Trumpton, oh you deserve a treat after your marathon ordeal. Haha, it's not the pharmacy doing the injections its a tiny purpose built clinic staffed by one specialist nurse. As you know those herceptin injections can really sting unless done correctly and she did a painfree job on me. Part of me would have liked to stay at the onc ward because they are lovely people and there is that reassurance of being looked after, but I wasn't given much choice. I do still have access to onc CNS as long as on herceptin. BTW how is your hair? Did it survive?

My post chemo hair is now about 1cm long, completely white, sparse and fluffy. Utterly hideous. I have two extremely nice wigs but hate wearing them so only wear them when going "out". My eyelashes fell out after chemo finished and I have half a dozen eyebrows left. So it seems I will have the cancer patient look for some time to come.

@Hippiechick162 this thread and the lovely people on here have seen me through a very tough seven months. It does seem unique in that it's totally supportive without enforced positivity (I hate even typing that word).

I cut my hair to 1cm all over this morning . I had had it cut a month ago but lost a lot more since . I too hate my wig so generally wear soft hats even at night as my bonce gets cold .
My eyebrows need drawing on and I have contacted someone who will microblade them free of charge . I like her work .
Eyelashes have virtually disappeared making my eyes a bit sore .
Hey ho !

I think microblading eyebrows is a great idea. I daren't do it before chemo for fear of infection. Will research it now!
You can see why I need the hat! Thankfully the family have been great and resisted teasing, and I have felt comfortable bare headed at home.

Oh Skap were are almost twins !
My DGCs love stroking my hair !
I don’t know how you would find out if anyone does eyebrows free of charge in your area . I felt very embarrassed even sending a message but I know two other ladies who have had them done so bit the bullet !

Hi @Trumpton I probably will still be in. She said around 6 days! Really not looking forward to the fetching underwear and stockings lol. Good luck for yours, I'll keep you posted on how good she is. Xx