Cancer Support thread #78 - 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

@Thymeout thank you so much, you have given me hope too - I might be relieved of some minor niggles as a bonus!

Thymeout Exactly ! Apart from huge swollen belly I had indigestion but also suffered from constipation quite a lot which I put down to chemo. But it must have been the tumours pressing on my bowel as things pretty much normal now!

@Thymeout and @thereisonlyoneofme this is so interesting! I actually said to a friend last night that my only symptoms are tiredness and the swollen tummy but I hadn't considered constipation which is a constant feature now I don't have the ascites. I have to take a sachet of Laxido 🤢 every day just to get anything started. I have some stress incontinence which I have put down to getting older. Oh sweet joy if these could be sorted out too!

I have attempted to attach a puppy pic, he's 6 months old, a mix of who knows what and very cuddly

@Acinonyx2 My residual non cancerous tumour was 2cm, so about half the size of the original.

Wishing everyone a good Easter, especially thinking of those recovering from surgery.

@bontopia he's gorgeous like a little beagle terrier mix

Hi, I joined whilst awaiting biopsy results in March. I have a grade 2 invasive ductal carcinoma. No sign from ultrasound or MRI of spread to lymph nodes but they will do a sentinel node biopsy during surgery.
Mine is oestrogen and progesterone positive, HER 2 negative.
I'm booked in for a mastectomy and reconstruction in just under 3 weeks. I could have the reconstruction later but doctor believes I'm a good candidate for immediate and that they can save the nipple too.
I will likely need radiotherapy due to the size of the affected area but not 100% sure until post op. Whether I need chemo depends on post op results too. Obviously, I will be on hormone blockers.
I will likely be home the same day as op! The hospital changed things last year due to Covid and most are ok going home the same day.
Any recommendations for bags/belts for wound drains and decent post surgery front fastening bras greatly received!

@HumphreysCorner

Hi *@MidnightLoo* you are the same as me but I'm 51 with grade 3 triple negative Breast Cancer and have 3 more EC treatments before an op and radiotherapy. Big hug 🤗

Ladies, I'm having terrible repetitive dreams which are awful but my family are just laughing at me. Not fun.

My ex boyfriend I've found tonight lost his wife December 2019. We've now contacted on Facebook.

Trying to improve things round the house but DH never approves. Ho him, another day eh?

HC x

Thank you! The EC is evil.

I feel really crap today, had to call the acute team.

Dizzy, mouth sores, chills. I feel like I've been stamped on and fluey.

Doctor said it's all normal for this part of the cycle.

Did want to poke him through the phone when he said to try and be resilient, all I've done since this started is be resilient.

Very sensitive today and feel like my husband is pissed off with me. Also don't understand why he lets the toddler run up and come in the bedroom when he knows in sleeping. But then again, if she didn't come in I'd sleep all night.

Today is a down day.

@FizzyOrange and @thereisonlyoneofme

It's six years ago now, but I do remember that 2 weeks post-op when I went to my check-up my wound was fine but I was still having trapped wind. Lots of prune juice and a friend sent me Ridgeways (?) Plantation Mint tea-bags from NYC. St Thomas's sent me home with a carrier bag of stool softener and ibuprofen and paracetamol. Was warned off anything with codeine. So it must be a common problem.

thereisonlyoneofme You said you hadn't lost weight? I lost over a stone, half of it after I got home. Went down a dress size and enjoyed buying a posh jacket with the money I'd saved through not having a private scan before diagnosis. GP advised against it. Every cloud...

@Vinorosso74

Hi, I joined whilst awaiting biopsy results in March. I have a grade 2 invasive ductal carcinoma. No sign from ultrasound or MRI of spread to lymph nodes but they will do a sentinel node biopsy during surgery. Mine is oestrogen and progesterone positive, HER 2 negative. I'm booked in for a mastectomy and reconstruction in just under 3 weeks. I could have the reconstruction later but doctor believes I'm a good candidate for immediate and that they can save the nipple too. I will likely need radiotherapy due to the size of the affected area but not 100% sure until post op. Whether I need chemo depends on post op results too. Obviously, I will be on hormone blockers. I will likely be home the same day as op! The hospital changed things last year due to Covid and most are ok going home the same day. Any recommendations for bags/belts for wound drains and decent post surgery front fastening bras greatly received!

The breast care nurses will likely give you a drain bag and a surgical bra at your pre op appointment.

The nurse said I would be given a bra before going home but they are having supply issues so she recommended having at least 1 post surgery one ready at home. I asked about what people do with the drains and she said some people use cardigan pockets (I don't own any cardies) and mentioned someone buying a belt-there's all sorts on Etsy but no idea how useful they are.
Thanks to Covid, my pre op assessment is mostly online. It's also done by a different clinic in the hospital. I coped with a cat having a feeding tube for a week so hopefully I can manage my own wound drains!

Any kind of bag that goes over the shoulder can hold your drain and a lanyard to clip them to when showering is useful.
Post surgery bras can be bought from M&S, Asda or Sainsbury’s. My problem is having a very large cup size before surgery.

@MrsPnut - can you possibly adapt a soft cup bra to a front-fastening one? Being on the large side myself I've done quite a few adaptions for breastfeeding and in swimsuits before.

Also if anyone wants to splash out on a fancy drain-holding garment there is the catchily-named Brobe: a robe/bra combo with in-built drain pockets. I might actually get one as I can claim for some items on my private insurance (hence why I went a bit mad & bought about 15 hats last week).

@bontopia Oh Puppy love! What a lovely dog. And very interesting about your residual - I do hope mine is at least mostly dead too!

@MidnightLoo My last 3 rounds were EC and I was pretty sick. As for your sympathetic dr - shall I slap him around a bit for you and test his resilience? Where the side effects are concerned some have the attitude: well you're alive aren't you - quit whining! There isn't much they can do except give more pills or cut the dose - but a little sympathy goes a long way too.

My dh has got a lot better at that over time. Maybe your dh needs to understand that you feel genuinely very unwell - I think that doesn't always really sink in.

@Thymeout

Many thanks for the pep talk. It was much appreciated.

My Mucinous tumour had stromal cell invasion and had started a wee March to my lymphvascular system so its not the best result for a muconious tumour BUT it’s a lot better than it could have been.

The largest lesion was 1 x 0.4 cms and that ties up with the consultant saying a few cancerous cells were found.

It seems I just missed the borderline diagnosis and I’m pretty sure that had Covid not caused the delay in my appts my circumstances would have been different today. Hindsight is a wonderful thing though.

I’m scared it comes back but I think my still a bit shaky mental health is causing me to dwell on things. And I know I sound very negative but honestly I really am trying to move forward - at the same time though I know I’m taking the odd step backwards.

I’ve tried on my surgical bra, my husband is such a lucky man.
I’ve also started using my dilators which again is so romantic.

Bag packing tomorrow for surgery on Wednesday.

@MrsPnut good luck for surgery tomorrow

@MrsPnut good luck tomorrow! Exciting (one step closer to crushing the fucker) and terrifying all at the same time. Thinking of you!

To everyone - may you ride your treatments as side effects free as possible! And a belated happy Easter 🐣!

I am still crapping myself and oscillating wildly between it’ll be fine and planning my own funeral. Still pawing at my ribs and sitting bolt upright at the slightest twinge.

Morning all! Alleluia, I am risen indeed! (hope no offence to anyone with this hubristic claim). Just v pleased to be feeling much much better after a pretty grim week, and hugely relieved that the last chemo is behind me.

Welcome and sympathy to @Vinorosso74 and @MidnightLoo. You have found the kindest and most supportive thread on MN and I hope it will help you get through treatment.

@cupcakesandcoffee glad to hear the thread has been helpful for you, and it's great that you don't need further treatment!

@Anne1958 I can quite understand why you're feeling thrown by the new information. The mental toll of cancer is huge, possibly worse for some people than the physical stuff. Have you considered getting some talking support from a counsellor? Also sympathy to @Lizdeflores re struggles with mental recovery. Sending a hug.

@MrsPnut very good luck for tomorrow.

@BadEyeBri hope you are feeling a bit better now. Also @Miava
that chemo isn't being too horrible.

@AlbertCampion I do hope you get proper answers about the liver issue soon and that it's something very manageable.

@Mckmck123 did you get your biopsy results? Are you OK?

@TopOfTheCliff you are on such a rollercoaster with complications, pains, new worries - I am sorry. Hope your path smooths out soon!

@balkanscot and @Alittlewornout that's really good you've made contact with Maggies and arranged for some support. There's a v nice centre at Barts, a lovely calm space, although I've only been in twice.

@FizzyOrange absolute crap re delay to surgery. Have they said any more about why? This sort of thing is so hard to manage.

@bontopia wishing you many years of joy with your pretty little dog! Also that treatment goes well.

@Acinonyx2, @HauntedDishcloth and @backformore of god, drippy noses! I had a week after every chemo of huge amounts of saliva coming up which sometimes made me retch, and lots of nose-blowing. Really hated it. And Acinonyx I'm so sorry you're facing such a long haul with chemo.

@Toofaroutallmylife have you got scan results yet?

@Livelongandprosper very pleased to hear your news and I hope you sail through the rads and hormone stuff.

Waving at everyone else here including @Thymeout, @BitOfFun (how's the bucket list coming on?) @Babamamananarama, @Percivalthebabyspider, @gillmoregirl, @HumphreysCorner (good luck with starting chemo), @loubieloo4, @Lubballoo, @Merlotbythefire (hope you are making a good recovery from Covid?), and @Starmer - haven't seen you around for a while?

Gosh this is a mammoth Bridget special!

Another lovely day here, we have had loads of sun over the past few days although also little flurries of snow yesterday, which was the first day I went out in a week, and we had a such a lovely outing! Drove to Wapping, by the Thames in east London, walked to lovely St Katherine's Dock, had a coffee, then went into Waitrose and wandered up and down the aisles gazing in wonder at all the lovely food and picking up a few bits. Honestly we were both practically hyperventilating from excitement, and I felt so happy, it was like a glimpse of normal life to come.

A few persistent effects of chemo - severe and almost unheralded diarrhoea the last two nights, thank god we have a top floor loo now . . and very poor sleep which I think is the steroids. I expect I'll get mouth ulcers again too. But nothing too bad.

I should get an appointment for a scan in the next two weeks. Gulp. My lovely counsellor is on a break till next Tuesday and I am missing her, OTOH I have loads to tell her next time so hopefully she won't be bored

Wishing everyone as good a day as possible. Love and appreciation to you all.

@thereisonlyoneofme so sorry I left you out above! That's amazing that you managed a walk on your own, but I'm a bit shocked that there was no help in place for you at home on discharge. Do you feel like you can manage everything you need to now?

Hi @Bloodybridget - good to hear from you- I was starting to worry!

Currently waiting for my PET scan, will see oncologist tomorrow for the results. Feeling very scared as I don’t want to go through all this again, and have made the rookie error of googling. Keep trying to tell myself it’s probably nothing and if there is a problem there will be a plan.

@Anne1958 I can quite understand why you're feeling thrown by the new information. The mental toll of cancer is huge, possibly worse for some people than the physical stuff. Have you considered getting some talking support from a counsellor?

Thank you Bridget, it’s been a horrible few days as it’s obvious from the reading I’ve done that if this bugger should come back then there is very little to be done. It’s resistant to the usual chemo therapies offered and success rates when it’s given are very low. However they are now trying to treat people with bowel cancer chemotherapy as the make up is very similar to the make up of BC.

I feel that if it comes back there’s a huge part of the fight that won’t apply to me because there’s next to no ammunition to begin with. It’s been a massive shock because the general mantra of ‘oh there’s all sorts of things they can do/try nowadays’ just does not apply even with Stage 1A muconious cancer with stromal invasion. I can now understand what I read regarding another rare cancer that sometimes those with 1A don’t do any better than those with stage 4.

This type of cancer only affects 3 percent of all muconious ovarian cancers diagnosed worldwide. It’s a tiny amount annually to the extent that the last study they tried to do in the UK had to be abandoned due to their not been enough people to take part.

I do see a mental health professional but I think my first port of call will be with my gynae oncologist to hear what she would have said to me 4 months ago if I’d let her.

Thank you.

I hope everyone had a nice Easter. I felt very lucky in that our local Marks and Spencer’s had hot cross buns in so I bought some and rationed them to one a day for 2 weeks. I could easily have eaten them in a few days. I also managed to get a Daim Easter egg that I’d been thinking about since I had one last year. It was delicious but I don’t think I can look at chocolate again for months to come. It was a lot to get through.

The weather here is now very hot and we’re now sorting the garden out for the long months ahead when it will only be watered. I can still harvest one more lot of tomatoes though and I’m happy about that.

We’re still on a curfew here and just yesterday the timings were altered to take the month of Ramadan into account which starts in a few days. Basically no one should be able to go anywhere except their homes for Iftar and anyone who does try to go to see their granny etc for Iftar will be arrested. I’m all in favour of it.

It’s all great fun. 🤣

@Anne1958 I'm wondering which country you are in - would you say? I lived in the Middle East for a few years and this sounds very familiar. And this is the month of the sand spring storms. Trying to keep people to their own homes for iftar will be interesting and then Eid!

Interesting to hear about your rare cancer and see why it is somewhat problematic.

@Bloodybridget hope you feel increasingly well post chemo Your updates help us all keep track of everyone!

@MrsPnut hope surgery goes superly smooth tomorrow and your bras are a perfect fit.

My main concern now is getting a date for surgery. I'm seeing the surgeon on Friday and really hope he has a firm date for me - preferably before May as by routine, it should have been next week.

Acinonyx2,

I’ll message you with my whereabouts and if anyone else would like to know I’m happy to message you also.

I’ve been here since the mid 70’s. I arrived as the very young wife of a national and I’ve been very happy.

People are usually very curious as to ‘do you have to wear an abaya and headscarf’ and the answer is no. I live in a very nice country with wonderful people and it’s never been expected of me. There’s absolutely nothing to distinguish me from any other British lady in her 60’s but I do always make my sure my knees and upper arms are covered. It’s something I’m very happy to do.

@Anne1958 Ooooh. That was exciting - I've replied