Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

@tothelefttotheleft yes neither could I! I think she was in shock and she’s apologised and she’s usually fantastic. Her experience of BC is friends who had it in the 1990s and didn’t survive - then if it was in the lymph nodes it’s was much more serious and likely to be less treatable.

Her reaction is why I don’t tell all friends everything, just the headlines - once you start using staging or grades in conversations people google to find out your odds and start to speculate about what impact it’ll have on you etc. So I just keep the details light unless they are family or close friends.

@Littlecaf
So completely agree. I shared alot in the early days and as mine was multi focal I think that triggered alot of negative reaction from people. I learnt the hard way so it's definitely headline info only now!!

How’s everyone doing?

I agree on the sharing. It’s interesting to see the sustained support too. Some friends have been terrific at keeping in touch but there have been some sad surprises in a close friend who has had endless support from me virtually disappearing.

Treatment #7 of 16 yesterday. 5 more pacli to go then 4 ec in the new year. It seemed endless yesterday but we got there. The cold mitts seemed particularly cold and were a challenge so I briefly slid my hands out of them. I had hot aches at the end. This is all way preferable to the finger pains I was getting so gives me a great incentive to carry on. I’ve had a real decrease in neuropathy symptoms since I started to use them.

I've got my oncologist appointment today where I think my endocrine therapy gets signed off. I think I am having ovarian suppression and Letrozole but I'm not 100% sure. I'm pre-menopausal but have a blood clotting disorder which means Tamoxifen is a bit riskier.

I really don't like my oncologist, she just decides stuff and doesn't explain it or answer any questions. But hopefully I will be getting the best treatment for me anyway.

Having sailed through surgery and chemo, I'm actually quite worried about sudden menopause and side effects from Zoladex and Letrozole.

Checking in. Pacli 5/12 on Tuesday still coping well with minimal side effects. Phew.

today sees the first of the kids Christmas school concerts.

positive news from me. My hair is fluffing back. See pic.

Morning. I have my first appt with the oncology team today so hopefully will get a clear plan and timeline. I need to know what's going to happen when, the uncertainty is driving me mad!
I told my parents yesterday. I didn't get past 2 sentences to my mother before she couldn't hear me for sobbing. However my big sister was visiting and she was, as I had planned, an absolute star. Once mum gets over the initial shock, I think she'll be OK. My DSis asked me to send them the details in an email and I must have written about 5 times that it is considered curable!

Good luck today @Poledra ans well done for sharing. It is such a rollercoaster. I said early on that I am responsible for managing my own emotions with the support of others and that I had to learn to let go of managing others’ feelings (apart from my very close family). There is a Lot to handle.

@ememem84 that is very encouraging. I still have Bobby charleton, my bald spot but it’s hanging in there otherwise. I wonder that the EC will do to me at the end though.

@londondragonite gah to oncologist. I’m sure you’ve a list of questions. This process gives us a steeliness and at the end of the day, our teams
are still people like us, despite their expertise.

I’ve been watching this- very moving but has helped me a lot with flipping some of my thoughts onward on their head about recurrence. My dad was a maths professor and I like to think it’s the encouraging pep talk he would have given me if he had lived just a few months longer (but I’m so glad he didn’t know, as he was so vulnerable and emotional in the months before he died).
www.bbc.co.uk/iplayer/episode/m0017wzq

Hi, I'm a regular on MN but NC to share my story.
Diagnosed with APL leukaemia this year, had a few cycles of chemo and have two left to do.
I wasn't bothered about my hair, shaved it all off once it started falling out. But I'm so bothered about my teeth. Bottom teeth have gone brown at the bottom and my teeth have receded so much. I'm scared they are going to get worse and all fall out.
Trying to get appointment with my dentist for an x-ray just to reassure me. Has this happened to anybody else?

Good luck @Poledra .

@ememem84 that regrowth is very encouraging, mine seems to still be falling out, I have practically nothing left. Paclitaxel number 5 is tomorrow, and will be off to have my bloods done in a little while. I've had so many mouth and skin issues with it, eating is such a huge challenge, I actually can't really be bothered. I do worry that my relationship with food will be forever changed 😔

In other news, my dentist sorted my tooth (£150 - ouch!) and I collected my new wig, which I much prefer to the first one I bought.

As for telling people, two friends have been absolute stars, one is very practical, and the other will let me moan and whinge - they complement each other! I've not told many people. My eldest has a severe learning disability so just knows Mum's not well but the hospital will make her better. Younger son knows, and a handful of work colleagues. I don't have any other family. A couple of friends just send me the odd text message asking how I am, but don't really respond to me. If I think about it too much, it makes me really sad.

I finally had my lumpectomy, sentinel biopsy and even a wired biopsy on my other breast that has been causing all of the shenanigans since August!

Tried various methods of getting to that area to biopsy so it's held everything up.

Op was yesterday and, apart from feeling a little sore, I'm beginning to feel a bit more positive.

My consultant is confident she got the tumour out and didn't seem overly concerned about the sentinel nodes but obviously won't know anything til next appointment on the 23rd.

I'm just so bloody happy I'm finally over the first step.

My lovely consultant said it was nice to see me with a proper smile on my face when she told me they were going ahead 😂

Annoyingly DH has taken a few days off work, primarily to keep our 35kg puppy entertained and away from me. But because I've been up and about he's taken on himself to retire to the sofa to watch TV.

I was dreaming of a few days being treated like a rare piece of china, waited on hand and foot!!!

Oh that is good news @drivinmecrazy - hope you continue to feel well. And he bloody should look after you!

@drivinmecrazy good news re the first stage. Dh needs to shift his arse! You need to move around to help circulation and prevent dot but you’re recovering from a major thing in your life.

@BatshitCrazyWoman brilliant to hear the tooth is sorted. Phew. You’re powering through the paclitaxel too.

hello there @Justgetitdone I hope someone can answer your question and that your dentist can help.

Glad to hear that there is some good news floating around here, my cancer shit show continues with DH still in hospital having had a stent fitted but in too much discomfort to be discharged. They are trying to balance everything out so that he's well enough to come home, get rid of the jaundice and then start chemo.

Meanwhile I had to have more fluid drained from my wound and been told to do less as the grafted bit is not knitting to the tissue and I'm in danger of needing further surgery. Quite how I'm meant to do less I have no idea - I've handed over care of my animals, I'm sitting down every afternoon for a couple of hours, I'm not doing any heavy lifting or carrying, so I'm not sure what else there is.

I have my own oncology appointment tomorrow afternoon, so I have to get my head around what they're going to do to me, at the same time as worrying myself sick about DH. Sleep is a disaster but I'm plodding on with much support from friends and family, and I had a helpful session with a clinical psychologist so that's something.

My teeth seem to have shifted but not receded or gone brown.

I catch the underside of my lip on my front teeth now. Chemo really is the gift that keeps on giving!

Saw the NHS oncologists, so it's 6 cycles of TCHP. I'm moving my treatment to private care (thank you, corporate private healthcare!) so have an appointment at the private hospital on Tuesday evening (but it's one of the NHS consultants who does the private work). Apparently it's very likely that I will start the chemo within 2-3 days of that appointment and I am now shitting myself. I wanted to get on with it but now that it is so close I am worried about how I will cope.

Once she was over the initial shock, mum has been great though very bothered that she feels helpless. Still have not told the DDs - think we will tell the at-home DD on Sunday, and wait to tell the others when they come home for Christmas.

And I am totally irrationally FURIOUS that DH never learned to drive, despite me asking him to over the years. So now I have to rely on the kindness of friends to help us out, or use taxis, while my own comfortable car sits unused in the garage. I know it's a daft thing to be focused on but I'd feel so much more relaxed about being driven by him in our own car than being in someone else's car (what if I'm sick?). And taxis often stink of those horrible tree air fresheners. And I know all my friends want to help (hell, I'd want to help them in the same situation!) but it makes me feel, I don't know, like I'm bothering them to help when my own husband could not be arsed to learn 😞

@frostyfingers hope your appt went well today.
@drivinmecrazy DH needs to step up and look after you. Glad the op went well.

@frostyfingers also hoping the appointment went well and that your dh is making headway to get home before chemo treatment starts.

@Poledra thank goodness for workplace health support. I’m on paclitaxel at present and not sure of the side effects of thcp. However, I think the sickness tends to come in after a few days. I’m worse on days 4-5 (treatment day is day 1). For me, that’s over the weekend so I’ll start to take my anti sickness tabs tonight. Hopefully someone who knows that treatment can be along to reassure.

here, my liver consultant and my oncology nurse are working things out for me. They’re two separate hospitals on two different systems. They’re now communicating about the additional bloods the liver specialist wants and the oncology nurse is arranging for them to be sorted through my picc, sent to a third hospital for analysis and then she will email the results to the liver specialist. Tremendous support and communication but if only there were a central system for sharing my notes and results!

@dancingwhilstfacingthemusic @poledra Thank you - DH is just home, still very yellow and with enough pills to stock a pharmacy. We are now waiting on his MDT meeting which is next week, and for the jaundice to recede before we know what happens with him.

My appointment was ok, I'm starting on EC-T on 30th December followed by radiotherapy and bisphosphonates. Probably 6 doses every 3 weeks. I feel quite calm about it as in the light of DH's diagnosis it seems quite manageable but I need to get my head round the joy of cold capping, etc. I was offered a Picc line but am for some reason not keen - can anyone tell me the pros and cons? Any other handy hints would be most welcome!

@Poledra good that you have a plan.

I could drive for the first 10 days after TCHP but was fine for the next 10 days - so it won’t be all taxis etc. Plan for 7-10 days of childcare/food/cleaning/shopping etc and then you’ll probably be ok to at least potter or nip to the shops. It’s all doable. Get it started and you’ll be finished quicker.

Sorry that should say “couldn’t drive” !

@frostyfingers thats really heartening that he’s home. I hope you’re able to take time together.

I have a picc line and find it so helpful. Mind you, I have 16 chemos which will be delivered via the line. I was told my veins might collapse if I didn’t have it in place (cheerful!). I have bloods taken the day before treatment from the picc line so am saving myself at least 32 stabs in the arm - I bruise badly. Given my liver issues (due to chemo), I’m having more bloods taken so the picc is very helpful all round.

I had it fitted at the hospital and it was no bother. It was a little uncomfortable for a few days but soon settled - I use a pillow to lean on in bed so as not to put pressure on it. I can bath, but keep it out of the bath with a plastic sleeve on it. I also can shower and wrap my upper arm in clingfilm and put the plastic sleeve over as it’s essential not to get it wet. No swimming either until it’s out. As I’m cold capping I wash my hair twice weekly in cool water and let it air dry - showering is quite the experience. Initially they’d said to wash hair once a week but my scalp has been so irritated twice is better. I’m using dove shampoo. I had my long hair cut short and it’s holding in quite well despite a little bald spot. I’ve lost quite a lot of my eyebrows but had them microbladed beforehand on the advice of some posters on the thread - this means you can’t really tell they’ve gone.

However, hopefully someone who is on a 3 week regime might share their experiences.

@frostyfingers pleased that your DH is home, hopefully he improves.

PICC lines…..hmmmm…..I had to get one because the carboplatin burnt my veins - then I got a blood clot in my PICC line so it had to be removed and had to go back to regular cannulas - but for the two seasons I had it, the PICC line was fine - easy to get in but I needed to have it flushed once a week but it meant no cannulas for a while which was great! If your chemo was weekly I’d say do it, but it’s only six sessions so 50/50!

@frostyfingers

Are you not having other chemo after EC? Tnbc patients usually have 12 rounds.

I'm a cold cap success story. Kept all my hair. You can always try it and stop if it's not worth it to you but can't do the opposite.

@tothelefttotheleft He didn't say there would be more, although radio and bisphosphonates are to follow. I'll double check on my next appointment. I do have diverticulitis and he is concerned that it might be triggered so maybe that's why it's less then usual. My margins were clear and there was nothing in the lymph nodes, would that be a possible reason there's fewer?

Yes, I'm going to try the cold cap - as you say if it doesn't suit then I can stop. I have a hair appointment on Christmas Eve (long planned!) so I might ask for a shorter cut then in preparation.

@frostyfingers

I certainly don't want to worry you.

My tnbc was stage one and no lymph nodes.

I had a lumpectomy and then EC and then pax and carbo. Then 5 radiotherapy sessions.

I didn't have the acid bone strengthening stuff as I was still having periods when I started chemo. I'm 52.

@frostyfingers

I was told to cut it so had it cut to bob length. But other people were using the cold cap with much longer hair. My adult child made sure it was fitted correctly each time. The nurses asked me if it felt ok but I could never tell. There are videos online to show how it should be done.