Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Sorry you are here too @Flibberdigibbit .....I relate to the anxiety around family history of late stage cancer 😩 I'm new here too and finding everything very stressful, the waiting in particular.

I really do appreciate everyone's reassuring words, especially about treatment developments.

Thanks also to @Penguinsa about the tamoxifen/surgery warning- I will certainly ask about that.

I have my genetics appointment today!

@Flibberdigibbit another one here with small kiddos. Mine are 5 and 7. Also just turned 40. It sucks ass.

but I’ve found so much strength and support from the team here. It’s amazing how a group of almost strangers can have such a calming effect.

today is an ok day. Feeling a bit ick. But that’s because I had a humungous glass of red wine yesterday afternoon.

I felt more capable so made roast dinner. Roast pork cracking. The lot. Yum. And indulged.

paying for it now. But am ok.

DH had a meeting in town so I’ve come in to do some Christmas shopping whilst the kids are at kids club.

we were meant to be in Paris at Disney this week celebrating my 40th with the Halloween parade. 😢. But 41 is where it’s at. I’ll go next year. 🙂

Good luck with the genetics today @MeowSplat - I had that done too and was lucky enough not to have the gene - hoping the same for you. Also the same for you with no lymph node involvement - the ultrasound finding nothing is nice to have but I agree I couldn't fully relax on that until after the surgery. But it is a good sign. Hope all goes well for you today. x

I love the sound of the humungous glass of wine and roast port with crackling - yum!! I'm totally with you on 41 is where it's at (in my case 51). Being 50 can just do one!

I've just got back from a pre-op appointment with the surgeon and nurse, all good to go for wide margin lumpectomy on Weds. It's all a bit scary but in a weird way I'm sort of looking forward to getting going with treatment.

In a way that only those of us on the thread understand, that’s brilliant news @frostyfingers

Has anyone any experience of having calcifications in their breast monitored? When I had my MRI for lobular BC to check what they saw on the u/s in my right breast was all there was (early July this year), they spotted a load of specks on my left. Some bright spark in the MDT team meeting suggested having MRI biopsy on the left. By the time the images got to the specialist (outside the trust), he was having none of it, saying he saw no reason to biopsy. The lead radiologist at my trust agreed with him. They decided they should be monitored 3 months later. So that's me this Thursday. Had my WLE surgery end July, finished radiotherapy 3 weeks ago, all for right breast and now more tests. Assume the specks are calcifications. Have read on Breast Cancer Now that these normally tend to be benign and associated with ageing post 50 (I'm only just 50 though), but can sometimes be a sign of early BC. Don't want to get on the whole bloody thing again!

Yes @frostyfingers just think in 9 days' time you'll have had your first part of the treatment. First challenge accepted and hurdle climbed!

I'm hoping I'll get the go ahead for surgery tomorrow, if so after two false starts I'll be celebrating the prospect.

Just want to get it all going but there always seems to be something they need to recheck and double check and just to make sure to check.

I'm supposed to be going in to get results of my other breast and to sign papers for surgery next week.

Not holding my breath. Also not sure how I'm going to react if I'm told that we just want to check one more thing.

Not their fault and I know that I'm getting great care, but really? How much am I meant to take!

Not being able to even arrange to meet my friend for lunch next week cos I don't know if I'll be under the knife or still be in limbo.

Feels like hell on earth at the moment.

I'm so lucky in that my girls are 19 & 23 so I don't have to worry about them so much.

DD2 is due home for reading week next week and can't plan anything for that.

It bloody sucks and I'm already fecked off with it all

Fingers crossed@drivinmecrazy, I know exactly how you feel, I have made and unmade plans on an almost daily basis and now it's a rush to get everything sorted. We have animals so I have to organise cover for whilst I'm out of action, and it's all been very vague up until now. I'm also supposed to be having a bit of gynae surgery at the same time and keep reminding them - I really don't want to wake up and find out they've not done it!!

@drivinmecrazy everything crossed for you for tomorrow. it’ll be brilliant to have another two over this next line of treatment.

I'm off for a liver scan tomorrow and bloods. Unfortunately I cannot eat or drink for six hours before the scan so I’ll get up early and drink a load of water and have some overnight oats. Fortunately the nausea has waned a lot so six hours without mints or ginger will be more manageable.

Next chemo Weds and … drumroll… I’m allowed to wash my hair on Thursday. My once per week wash, lukewarm water, no massaging of scalp, no hairdryer - so glad I made the decision to cut my hair. My hair and scalp feel revolting and although the chemo/ cold cap are the necessary precursors. I’m keen to get them done for the hairwash reward the next day!!

@frostyfingers Great news that it is all go for surgery! I can't wait to get rid of my own bastard cancer!

@dancingwhilstfacingthemusic The very best of luck with the scan tomorrow.

I had my genetics counselling and blood test today. I will be tested for 10 different genes and the results should be 3-4 weeks (much faster than I was expecting!) I also gpt my MRI date.....a week today! Although I will probably have to wait until the week after for the results, as the medics involved have their meetings on Fridays.

More waiting, more scanxiety (very apt term indeed!)

@dancingwhilstfacingthemusic Excuse my ignorance but is the once weekly hair wash due to the cold cap?

Edited to clarify....to help you keep more hair, in conjunction with the cap I mean...by washing/disturbing it less?

@MeowSplat no ignorance at all - I didn’t know about that until I rocked up for my pre treatment chat! Two things I’m glad I did pre chemo: getting my eyebrows microbladed - thankyou to the wise women on the thread and having my long hair cut short. I had to move pretty fast on the microblading as the company that did it wanted to be sure there was time to heal before chemo. I’m delighted with them. My eyebrows will start to fall in the next week or so along with lashes and other facial/ body hair. That’s going to be hard.

my hair has been sent to the little princess trust. I’m sorry if I’m over repeating myself but not sure what people have read or retained in this incredibly helpful thread.

I found cold capping tolerable first time. I have to do it every time or might as well not have done it at all. It’s to slow down the blood circulating the chemo around the hair roots. No rubbing of scalp or heat (including warm water) to help with retention. I’m asked to use a wide toothed comb or soft brush. I’ve also bought a bamboo sleep cap so that I don’t rub my head on my pillows too much as I’m still restless but that was my choice rather than a recommendation. My hair is minging so I’m using long scarves and twisted hairbands to keep it out of the way as it is such a sensory overload. However, if the cold capping does the trick I should keep some of my hair and it should grow back more efficiently.

For those about to start pax, thankyou for not being scary about EC. I appreciate it’s feistier than Pax and it’s at the end of my treatment - I don’t want to get a “thing” about it.
Ive only had one pax so far last Weds. I felt more energetic and less queasy over the weekend and much more like myself today. I had a sore tongue and very dry eyes for a couple of days, with sense of taste going. I’ve had a little more of a sense of taste today but it could be due to working out what foods suit better. In putting Greek yoghurt in everything to soothe my mouth!

@Flibberdigibbit and @ememem84 I'm also in my early 40s (41) with two young children - recently turned 7 and 11.

I had a single mastectomy in July and went flat on that side, started chemo in August and have just done week 10 out of 12 Paclitaxel. Will continue with Herceptin until next August.

It's all going really well, I'm still able to work and parent and feeling pretty decent still. I'm a little more tired now and honestly just looking forward to half term week staying with my mum and enjoying her home cooking! (As much as taste buds allow ha ha)

I'm now getting mildly panicked about impending menopause as after the chemo ends I'll be going on ovarian suppression and Letrozole (an aromatase inhibitor) for 5-10 years. Not sure I'm emotionally ready to go through menopause! Think I'm already having some hot flashes and the chemo has stopped my periods.

Gosh thanks everyone for the welcome and the useful tips already. I hope I'm able to live as normal as life as possible through treatment - @londondragonite great to hear about your experience.

oh @ememem84 I've always thought Disney for Halloween would be amazing, such a balls it's off the cards this year but will be a great goal to look forward to. I turned 40 this year too and fcking cancer was not on the list!! I am so glad for the things we did manage to do this year before this madness kicked off

@MeowSplat the waiting is the worst and there's always something to wait on!! I'm trying to do the live in the moment thinking but that slips easily. With the recent diagnosis I find I am all over the place with the pure shock of it all - I think when that fades it will be more manageable. But it does take time to soak in it seems

@Flibberdigibbit i said to DH about 6 months ago I wanted to do fun new stuff before i turned 41. Cancer and loads of legal hard core drugs were not on the list neither was buying a wig. But whatever. We move forwards.

today the bloat has got me. I feel I resemble Winnie the Pooh. DH has helpfully suggested “just lose some weight” (ok then….!) I feel full of air. Might just need to fart on him. That’ll show him. 🤣

anyway. Having a strong coffee in the hopes things get moving.

Oh good lord @ememem84 trap his head under the duvet and let rip! The burping I get post chemo was rather something to the point where I stopped apologising after each one. It settled after a couple of days. Wind is now also going via the rear exit so it’s going to be an interesting few months living indoors through the winter.

For those going through chemo, I’ve found a ginger chew called gin gins (amazon) which has been great to help with nausea, wind and mouth comfort.

I can understand the concern re going into menopause. It’s all a bit much after chemo, really? It’s a shame we can’t be sent to a wonderful villa in the south of France instead, with childcare, staff and personal chefs.

id be on board with south of France. Shall we just get it booked? Tell the others!

I tried queasy drops. They were amazing. Until I realised I had a variety pack and some were banana flavour. I cannot stand banana. 🤮🤢

im wierdly ok with menopause. I mean I knew it was coming at some point so it’s not a “new” if that makes sense.

part of my bloating I think is because the chemo may be fighting my menstrual cycle. Aaaah. Such fun.

I have realised that in the 3 months I’ve been off work I have somehow managed to save a fortune. By not being at work in the office I’m not in town and no shops etc. so I’m squirrelling the money away. Just added £57 to my savings to make is a nice round number.

spoke to mil last night too. She’s in NZ and does the “night shift” as in she’s available for chats when everyone else is asleep given the Uk nz time difference. She’s come into her own these last few months. I suggested to her maybe she come over in the summer (our summer) to visit. DH is missing her and to be frank probably needs a mum hug.

im tempted to use my savings to either pay for her flight. Or if she insists on paying, using it to upgrade her flight. Everyone would benefit from a mad 60+ year old kiwi mum/mil/nanny coming over.

DH would get mum support. Kids would have quality time with nanny. DH and I would benefit.

Yep. Extra large villa with staff. Happy sigh.

Absolute yes to MIL! Extra hands needed, particularly as treatment progresses and would also be pounds in the joy box for the family. I’ve roped in my mum for a lift for my grown up sons - one goes to work events near hers and stays for a few days at a time. Great respite for him.

totally agree on differences on the financial side. Everything tastes horrid so I’m not getting takeout coffees and food from our local cafes. I’m not working so only have savings income whilst I’m being treated (altho dh helps me out). My spends tend to be knitting wool and chemo hats right now.

I’m lucky to have saved quite a bit too - no commute, no lunches, no holidays. So grateful for my work and sick leave though, I’m aware that not everyone is in the same boat. Just asked the GP for another 12 weeks sick leave.

I’ve just done (last week) 5 of 6 TCHP and today is agony. My lymph nodes are painful in my neck - the nurse has repeatedly told me it’s my bodies immune response and not spread but my mind just goes there. This is all so scary when it’s happening to you. I just want it all to go away. I know we all do.

Ive really fallen apart mentally this cycle - was coping quite well - yes it was horrible but I just counted the days, this time I have anaemia, neuropathy and it feels like everything is breaking. I’m exhausted. The nurses have referred me for counselling. My DM and DF are on holiday in Australia (love them) but my DMs worried phone calls are a bit upsetting. DP is being amazing with the kids and half term and working. It’s all a bit much right now. I’ve never coped with being ill very well - I’m always “if my head didn’t hurt” “if my stomach was ok” etc I’d be fine.

just feeling sorry for myself I suppose. Dark evenings don’t help.

South of France here we come!

I reckon we will be overdue a really good holiday after all this is over! I am also going to go out for a really fancy dinner as soon as my sense of taste has recovered from the chemo!

Sending you strength and solidarity!

I'm also in the last leg of chemo and it's definitely dragging out a bit at this stage - feels like it's been going for ages but still not quite done. Be kind to yourself. I've been trying to do nice things and chat to friends a lot to keep up my spirits. Also to plan for some treats next year and make lists of yummy things I want to eat when my taste buds are back in working order!

Counselling is a great idea. I've been seeing my therapist every couple of weeks and it's been so helpful to have somewhere to really vent and let worries out and feel accepted and heard.

Hoping you start to feel a bit better soon @Littlecaf

I've also saved money - commuting, food (really lost my appetite) and very especially the hairdressers! I have developed a bit of an Amazon habit, but those parcels or Kindle books are little bit of joy in what is quite a dull life at the moment. I've got back in touch with my counsellor (who got me through a horrendous and drawn out divorce, and the fall out from it) and have an appointment at the end of the week. I feel quite teary a lot of the time, and also a lot of dread about the future.