Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

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

@sunflowerdaisies welcome to our lovely group. Hope you get results very soon.💐

@Littlestelephant good luck today, thinking of you x

Hoping for a call today after the MDT meeting.

HC x

Hi guys I was first on the list and I'm now awake. Nibbling on ginger biscuits and asking to go home. Thank you for all the support and thoughts over the last few days. It has really meant a lot to me.

@Littlestelephant super speedy surgery there. I hope you get to go home soon.

@Littlestelephant Take it easy.

@Littlestelephant pleased it's over for you and hope you're home soon.

@Littlestelephant glad it's over, I hope you're home soon. I've watched whole series of Bridgerton when resting, took my mind off it for a bit!

@sunflowerdaisies the duke swoon lord that man is fine

Waving hello to everyone!

Gosh, yes, Bridgerton provided me with many happy hours while I was having treatment!

Is anyone on Tamoxifen? I started last Wednesday. I'm taking the tablet when I go to bed, and since I started my sleep has been very poor - unsettled and uncomfortable. I also started radiotherapy last week, too - so I'm not sure whether either the drugs or the therapy are to blame. When do other people take their doses?

I've also started to get quite sore from the radiotherapy. I've got some QV lotion on order from the doctor, but the nurse told me not to use my Biafine, which I actually really like. Anyone else had good results from Biafine?

@AlbertCampion hope you found something soothing to use. I treated myself to Liz Earle rich moisturiser which was lovely.
I take my anastrozole at night but left it behind this week when I went to look after DM. I’ve been awake fretting till 4am some nights which is just anxiety about the biopsies getting to me I think. I don’t think it was affecting my sleep anyway just giving me stiff joints.

I’ve thrown myself wholeheartedly into the death admin for DF and found everything we needed. Gold star for me! DM kept insisting the P60s had arrived but a few phone calls have established she is thinking of last year

I ought to do some exercise but I’ve got a bit sidetracked this week. I’ll get back into my stride if and when I get the all clear tomorrow.

I want to thank everyone here for being so lovely.

I have begun reading this thread from the beginning to catch up on everyone.

I am off to my first visit to the oncologist. Could not sleep last night for the anxiety..

@SecretWitch hope your oncologist's meeting goes as well as can be.

@TopOfTheCliff waiting to hear on your biopsy tomorrow.

@HumphreysCorner any word yet?

I had my postponed radiotherapy planning meeting yesterday but still too inflamed and swollen from the ongoing glue allergy so it's postponed another 2 weeks I just hope to goodness it's OK in 2 weeks. I suppose there must still be traces of glue that we just cannot get out and hopefully my system will gradually give up the fight.

Does make me anxious about the effect of radiotherapy when it comes to it though - I will need the mother of all moisturisers. And anxious because I'm not starting Kadcyla until after radiotherapy so feeling a bit vulnerable and unprotected in the meantime.

@AlbertCampion I have lost all of one pound - at least I hope so it's hard to be sure until it's consistent for a few weeks. Don't mind if it's just a pound a week as long as it's consistent. Did rather pig out today though - leftovers, cake.... fish and chips later ....

@AlbertCampion you've got to be really careful about what creams you use for radiotherapy. If you ask the skin nurses in your radiotherapy unit they should give you a massive vat of stuff. I still have 1litre of diprobase left over When you go for your treatment they like you to have nothing on your skin at all.
Because I was having my whole pelvis zapped I wasn't allowed to use shower gel. I can't tell you how much I spent in Molton Brown after my treatment was finished 4 weeks of just water washing was a bit yuk
The radiotherapy made me really tired. Like someone took my batteries out. My external radiotherapy finished 5th May and I'm only just getting some energy back now.

I'm organising my referral to the HRT clinic. I received my GPs referral letter along with a copy of my consultants letters. While my cervical tumour was "bulky" there was no node or distant spread. Phew. Roll on first post treatment scan in August

Thinking of you @SecretWitch

Seeing the consultant tomorrow at 3pm to discuss a treatment plan. A tad nervous 😟

HC x

@AlbertCampion I started Tamoxifen last Wednesday I'm taking tin the morning. My sleep is rubbish usually so no worse, I find two kiwi fruits two hours before bed helps me sleep when I'm really struggling, this may be my imagination but there is some science about serotonin levels which I can't remember.
No sign of any hot flushes which is a shame this week as I've had to put the heating on and my chilblains are playing up. I'm not sure if its a side effect but I have the biggest spot I've had in years (possibly chocolate related)
I have my radiotherapy planning appointment this week and had to have a covid test today so I can go into the oncology department which means I'm now isolating until Thursday even though I was allowed in there last week with no test.

@KitchenFishCurry I've also read that about kiwi - but I'd forgotten. So happens I have some in the house so I think I'll try it tonight.

@HumphreysCorner, thank you. I am sending tons of positive thoughts to you

Thanks for the tips about radiotherapy. The nurse has got my GP to prescribe some QV lotion which is fine - I'm just a bit sad about the Biafine as a friend recommended it after her treatment, and I'd loved it. It's a French cream specially for radiotherapy burns, and I got the impression that the nurse was rejecting it more because she hadn't heard of it, than for any medical reason!

So sorry about your delay starting, @Acinonyx2. It must be so frustrating! I'm a week into radiotherapy and I am already quite burned, so I can understand why they don't want to do anything else to your skin if it's not healed. It's still v annoying though.

On the weight loss front, I am down five pounds. But that's two weeks of 16/8, then one week of adding in 5/2. It's not loads but it is a start and feels manageable - if I can get myself to 2lbs a week then I may actually be a decent size by Christmas!

Oooh and @KitchenFishCurry thanks so much for the kiwis tip! I will give it a go. I may switch to taking the Tamoxifen in the morning and see if that makes any difference, too.

And good luck for tomorrow, @HumphreysCorner! Rooting for you! x

@AlbertCampion I’d use the biafine, the only thing to be careful of when having radiotherapy is using creams with metal extracts because these react to the radiation. Biafine is the same as the flamigel RT that I was given and I had very little skin breakdown. I think you are right that the nurse hasn’t heard of it rather than it being harmful.
I do just tend to do what I want though, within reason.

Welcome @SecretWitch and @sunflowerdaisies to the thread no one wants to join. I hope your oncologist appointment went ok today Secret.

I spoke to my oncologist yesterday and he sympathised about being admitted and understood why I escaped. He said my Friday blood tests show my neutrophils were increased from Thursdays test and he was happy for chemo to go ahead next week but at a reduced dose.
I’ve asked him to arrange a port fitting because now I am tied to my right arm only, I have so many bruises from repeated canulations whilst I was in hospital. I can’t do this on a regular basis.
@HumphreysCorner good luck for tomorrow and you too @KitchenFishCurry for later in the week.

@MrsPnut

Thank you for the lovely welcome. I hope your oncologist agrees to fit you with a port..

My oncologist was very kind and reassuring. He believes we have caught this at an early stage. He was concerned that my date for surgery is not until 7/15 ( wide excision and sentinel node biopsy)

He requested I contact my surgeon and see if I can have an earlier date. I felt so weird dropping a note to the surgeons office...

I’m sending love and light to everyone here

@SecretWitch My oncologist will agree, it’s just how quickly he organises it. I am a private patient so things are a bit different.

Your surgery date is quite a long time off, have you been given a reason? Also your oncologist and surgeon should have been at the same MDT when your case was discussed so why is he making you chase it.
I was looking at a 4 month wait for surgery privately with one surgeon so I got a second opinion and changed. I was operated on within a month on the NHS by the surgeon I saw privately for my second opinion.

I ended up having to go back to surgery because I got a haematoma. I'm back out now and having regular checks to see that it's now all ok. I will be spending the night here which has upset me. But I'm just hoping I don't have to have my third anaesthesia in 24 hours.

@Littlestelephant What rubbish luck, hope things heal well and you get home tomorrow.

It's still bleeding so I am waiting to go in for the third time. Anyone had 3 surgeries in 24 hours? I'm scared now