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

Hi all

Half term is over so going to catch up with posts.

My operation is on the 25th June which isn't long away.

Can't remember who said about getting BC in the boob DC fed on the most. Mine is in the one DS fed from for 22 months. Ironic really.

Have started walking 3km a day with my dog. Hoping to lose some weight from it.

Big wave 👋 to everyone. Back later when I've caught up.

HC x

@Acinonyx2

Sorry to see so many new names here - but welcome all.

@KevinTheGoat as many as 1 in 3 or even 1 in 2 people will get cancer at some point so everyone tends to have a number of relatives with cancer - so unless it's the same kind of cancer - hard to say if there is any connection. 3 of my cousins died around my age but from different cancers - coincidence or not? No-one knows! Glad you're back with the NHS properly.

@Lunificent hospitals do vary and I will definitely be taking this into account and treating this as a chronic condition if we decide to move (I'm also at a relatively top place). A lot of people come from other hospitals to mine for treatment - I wouldn't want to have to do that - I wouldn't want to have to travel further (already 20-30 mins drive).

I found out from my mum today that not only did my paternal granddad have cancer, his sister and two of his brothers did as well. Definitely something going on there. It's more the fact my brother and I both had it at a relatively young age that I find a bit weird (I'm in my mid-thirties and my brother was in his twenties when he had Hodgkin's, though apparently it is quite common in younger people).

Btw has anyone in here had osteosarcoma/bone cancer? Or craniofacial cancer?

@KevinTheGoat
I'm the fourth generation on my mother's side that has had breast cancer. As all have been post menopausal, doctors have always told me that it's very unlikely to be genetic. It does make you wonder though and this is one of the many things bothering me at the moment as I have two daughters.

I have paid to get my genes looked at. Costs a lot (£500) but I figured it is worth it for my health, and my DC if anything shows up. It was arranged through my BCN but I'm having treatment privately so not sure how it works on NHS. Takes about 4 weeks for results to come back. I'm particularly interested in terms of considering whether it's worth having a prophylactic mastectomy on my other side.

@Greenelefant what kind of sample did the test use - did they use a tumour biopsy or just cheek cells?

This one was a saliva sample. I had to spit in a tube until there was enough liquid in there. Slightly odd experience having to spit multiple times in front of the nurse! I think it was a US company called Color?

@Greenelefant thanks - it's something I'd like to get done too.

I also did the saliva test; also shipped to the US for analysis. Cost around $200 CAD. The company is called Invitae...

On previous threads I've posted about making younger DS various costumes for school during my 4mths chemo - well, yesterday on the eve of my mastectomy the theme continued: I found myself making a wizard hat as his class is starting a wizard story this term!

Now I'm recovering in hosp overnight. Too dozy to know what's what yet but at least not too sore so far. Can't keep up with everyone's news at the mo - the thread's certainly been busy.

@HauntedDishcloth hope you feel well and rested in the morning

I was surprised how little pain I had after mastectomy. It actually slowly increased over the few weeks afterwards, presumably as numbness reduced and nerves grew back. I wouldn't call it really painful though, more sore and uncomfortable.

[quote barkydog]@KevinTheGoat
I'm the fourth generation on my mother's side that has had breast cancer. As all have been post menopausal, doctors have always told me that it's very unlikely to be genetic. It does make you wonder though and this is one of the many things bothering me at the moment as I have two daughters.

[/quote]
Might be worth asking them to get checked when they're older, even if it's just a routine thing. It can't hurt.

@Haunteddishcloth hope you are asleep now and that you feel ok in the morning. Wishing you a swift recovery.

@HauntedDishcloth I hope you feel ok this morning and are on your way to getting home.
@Bloodybridget It’s always the way with such things. I hope the nausea eases soon.

@backformore and @Littlestelephant Good luck for results this week, mine took 3 weeks to come back and be discussed at the MDT.

I had my port fitted yesterday and it went very smoothly, apparently I was the calmest person they’d ever had. Not sure that is true but I trusted the doctor doing it. He also fitted my PICC line.
I do feel like I’ve been punched in the chest though and moving around is a slow process. I’ve been taking painkillers regularly and might manage a wash soon.
I also managed to faint in the middle of the night. I went to the loo and remember feeling very peculiar, and the next thing was waking up on the bathroom floor with DH panicking. Not sure what happened and have been fine since except for a bump on the head.

Welcome to all the new ones on here, sorry you find yourself on this thread but the ladies on here are lovely.

@MrsPnut hope your head is ok, how frightening.

@HauntedDishcloth hope you are home and recovering ok.

@Bloodybridget boo hoo to the nausea and sickness. Hope it passes soon.
@Littlestelephant my BC nurse asked me if my family was complete as my chemo would bring on the menopause but I've already been through it. Deffo ask your nurse about it.

@Lougle I'm so pleased for you, very good news.

@MaBroon21 I'm pleased for your result to, such a relief.

@AlbertCampion love the wig. I much prefer my cheap Rocky Horror wig to the mega expensive one my BIL sorted which I can't wear.

@TopOfTheCliff I'm having the same surgery you had and I'm hoping to move on from fast walking to running when I'm healed.

My cancer isn't genetic but my grandma on mum's side had a mastectomy and her sister died of BC as she refused treatment. My other grandma had ovarian cancer which she got in her late 90's. At the moment it's me, my auntie and my cousin who all have different cancers.

I'm sweating so much when walking that my PICC plastic plaster things won't stick to my skin so my PICC hangs free.

Big wave 👋

HC x

Steady on @MrsPnut - take it easy!

Good luck tomorrow @Littlestelephant and @backformore

I emailed my nurse about my onc appt tomorrow as it suggests I may need bloods. But why would that be - I ask? Because apparently, I'm starting my new chemo on Tuesday

I guess that's a good thing just a bit shocked. Last they said was they would wait until after rads - so end July. Of course who knows if I will start rads on time due to glue gate (it must be several minutes at least since I've mentioned 'glue'.....).

@Acinonyx2 Eek, there’s nothing like including you in your care decisions.

I had a telephone consultation with my gynae oncologist tonight, my last MRI showed NED for the vagina, I do have adhesions in my left pelvis but they have been there all along apparently and are probably to do with my IBD.
She talked about my port, because I had to get her to do the ok as it was at her hospital, she was on annual leave last week but did what she needed to and chatted about my neutropenia. She trained with my breast oncologist which helps because everyone knows each other and there is no ego involved.

@MrsPnut good news on vaginal NED. I despair of communication with oncology. I really feel like a bit of flotsam in a tide of patients.

I have just been having a tidy up and have several cheerful Annabandana head wraps/ turbans so if anybody needs some just send me a PM and I’ll post them. They are nice and cool in summer compared to the wigs.
I went out to a cheese and wine evening last night and as we cycled there I drank freely of the lovely wine. Today I have been rather jaded and realise I am now a complete lightweight with alcohol as it was the first time I have indulged in a year. It was fun but I think it’s back to teetotal for me for a while.

@Lougle I am so glad you had good news. Also @MrsPnut your NED is worth a cheer!

I was muttering to myself about the awful diet for the colonoscopy prep which is basically all the things I don’t eat like white bread and white rice and pasta with no fruit or vegetables. My new friend asked why I had to eat them and confessed she is having a colonoscopy the same day. She is on the 2ww referral for rectal bleeding and is really scared she has bowel cancer. I am confident mine will be fine as the universe owes me some good luck now. Is that crazy thinking? Especially after @MrsPnut got the double whammy. Anyway it is nice to have a buddy to swap stories with as she hasn’t told a soul.
Regards to all. Hopefully tomorrow my —hangover— tiredness will have gone!
Top

The Breast Centre called first thing this morning. My results aren't back yet so my appointment has been rescheduled for next Thursday instead.

@backformore Hope you get good results today. I have everything crossed for you.

@TopOfTheCliff sounds like a lovely night out. I hope the hangover passes quickly. And it is about time the universe got its act together. So good luck.

Humphrey do you mean your PICC dressing is coming off when you sweat? I'd be super nervous about that.
I have learned that there are PICC dressings and PICC dressings. I will only let them use the Tegumo ones now as the other ones are too flimsy and let the line wiggle about which makes it sore.

I am finally to be rid of my PICC - I get a Hickman line fitted for my stem cell transplant which is removed when I leave hospital. Weirdly the thought of being line-free finally is one of the few positives I can hold in my mind at the moment.

@Babamamananarama yes, it's a right pain.

@HumphreysCorner That looks rubbish, I struggled with getting decent PICC line dressings too. I got given a stash by a nurse and made sure that was what they used from then on. Tegaderm dressings were good though, that’s what they use at the oncology centre. Do you have a stat lock on it?

@Babamamananarama Being free of my PICC was great too, not sure how the Hickman line compares but hopefully it will serve it’s purpose.

@TopOfTheCliff good luck with your colonoscopy, I’m sure it will be fine. No one can be as unlucky as me and get two at the same time.

@Littlestelephant Thank you 🙏 And argh on your behalf! How long have you been waiting now? It’s been three weeks for me and not impossible that I’ll also have to wait longer (results still weren’t in on Tues). Feeling very anxious and just want today over with...

@MrsPnut they started using more expensive dressings as these plastic ones give me a rash. I have ripped the dressing off and steri stripped the PICC in a different place and put another dressing on. Only have one left now and not back until the 17th although my pre assessment is on Monday so I could ask for more then. Yes, have a stat lock.