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

[LemonDrizzle10]

New thread - old one nearly full!

Worth asking the question @ememem84 Hope it went well.

@ememem84

That's shocking how much hair growth you had in ten days!

It did go well. Cancer has shrunk (although it’s difficult to say how much because of its shape) but it’s also feeling much softer. Surgeon said that if you didn’t know it was cancerous you’d assume it was just dense tissue. That in my eyes is a win.

we talked surgery. Sadly he doesn’t want to do a rebalancing on the other one at the same time - there are other factors to consider - such as whether the implant will be ok with the radiotherapy etc and maximise my body’s chance at healing. Makes sense.

I asked how long I’d be under for. He reckons no more than 2.5 hours. So that’s good. I expressed my concerns about surgery (as in I’m scared about it because I’ve never had it before). I’m talking with the breast care nurse in jan about all this. So they will help.

so we are on track.

@tothelefttotheleft its a crazy amount of regrowth isn’t it?!

i had crazy strong hair to begin with but have started taking a collagen supplement in my tea (ancient and brave marine collagen if anyone’s interested. On Amazon. My oncologist checked it and said it was ok to take while on chemo). And have been using the German caffeine shampoo (planter something). whether these have helped or not I don’t know. But who cares. It’s my actual hair.

That's excellent news @ememem84 ! And I'm glad you managed to talk through your surgery options too.

I'm going to add asking about collagen supplements to my list of questions to ask the oncologist. I'm very fair so you can't really see it, but have some fuzzy hair growing in - I'd like to encourage it to grow faster! When I asked about other supplements before they were adamant only vitamin D and nothing else was recommended. I'm hormone positive, and I think that's why some things (collagen? I don't know) are not advised.

Weleda rosemary hair tonic is recommended a lot, too.

I think he'll say no, having watched this (I have a lot of time for this doctor)

had my last chemo last week. So that’s me done for active treatment.

swinging between excited for the future and just feeling like I have whiplash from this last year.

i had a masectomy in July and I am desperate to get symmetry surgery and remove the other one. I understand the rational that i had to do chemo first before possible reconstruction (which is what is on their agenda but not mine- this is where I plan to ask about a second masectomy) was discussed but I have no idea whether the idea will be accepted or if I’ll have a battle to get it agreed. So I keep having imaginary arguements in my head. I hate uncertainty. I’ve also been warned that it’s a years waiting list for reconstruction so I presume would be similar for a second masectomy. I would have felt so much better if 6 months ago I could have had that chat and at least known that was sorted.

I start letrozole in a couple of weeks and I’m trying to keep an open mind about it but I’m really worried about it . I told the doctor I was worried about osteoporosis and she told me I should be more worried about bone cancer.

I don’t want to take ages off work as I don’t think it’ll help but i don’t know how to stop thinking of cancer and go back to normal life in just a few weeks. I have signed up to breast cancer now course on “moving forward” which is luckily timed for end of January so hoping that’ll help.

@aodirjjd im struggling too with the idea of stopping thinking about cancer. It consumes every part of my waking life at the moment - yes I’ve had the odd afternoon not thinking about it but it just never stops. I also feel I have emotional whiplash. It’s an indelible feeling that I can’t shake.

@aodirjjd @Littlecaf

It’s just over a year since i finished active treatment for TNBC, surgery, chemotherapy and radiotherapy.

Emotional whiplash is such an apt phrase.

I think I completely underestimated the physical and emotional toll of diagnosis and treatment and was desperately determined to get ‘back to normal’. I was extremely resistant to the idea that this was life changing, that cancer was part of my identity, my life. The oncologist told me that a lot of patients find the year after treatment challenging. I was very dismissive of that idea, but it has been.

i found such dissonance between people telling me how well I’d done, congratulating me on completing treatment and how pleased I must be feeling and what I actually was feeling, which was exhausted and, I now realise, traumatised.

Add in the need to manage the anxiety about recurrence and adapting to my changed body and the physical after affects of treatment and yes, challenging is an accurate description.

BUT I am recovering, I don’t think about cancer all day, every day. I am physically very well, and I am getting stronger emotionally. I have learned to be kinder to myself, and patient and accept uncertainty. Cancer is a part of my story, but not a dominant part. I am ok. Hoping you will be too

Thank you so much for your kind and wise words @GrannyGoggles I can't speak for others, but I find your posts so reassuring and helpful. I've hit a bit of a psychological wall, and will be speaking to my counsellor in the new year.

Yep... I'll second @batshitcrazywoman ..thankyou @GrannyGoggles it is really reassuring to hear from someone a bit further away from all this shite. I pretend it's not happening to me most of the time but when I don't get much sleep (like this week) my little demon thought monster likes to keep me company and remind me of lots of worries.
He is not very Christmassy.

Can I ask others on here.. I am on weekly paclitaxol. I have 3 more to go. I was told to expect possible side effects of bone ache and maybe some neuropathy. So far they haven't really occurred but I do now have more discomfort (borderline pain) in basically my operated area..so where my boob used to be and under my arm. I tell myself it must be related to the chemo drugs as this area must be the most sensitive surely? Has anyone else had this? I am 5 months out from my mastectomy but this discomfort has increased over last couple of weeks. I have full movement just phantom boob pain. It was a pain in the arse when it was here.. frankly can do without it.

@somewhereonthe517 I developed discomfort in my breast during chemotherapy. I had wide excision followed by cavity shave rather than mastectomy. It is, apparently, not uncommon. Discomfort continues, I think due to all the different treatments. Clinicians are a bit mealy mouthed about it imo. It’s not painful, more an unwelcome niggle, and it’s catnip to the thought monster. I have many a chat with him, telling him that I know his game and I’m not going to join in. Which works sometimes!

@GrannyGoggles thank you for your words. I like “it’s catnip to the thought monster” too - certain how I feel about the arm ache I get (it’s PN apparently). Just come out of surgery feeling a bit off….sleep is quiet is needed.

surgery is booked. 25 feb. In the diary.

Thankyou @GrannyGoggles your advice is always appreciated as is the fact you still look in on us when you could be looking in your rear view mirror! You are very kind.
Hope recovery is good and easy as it can be @Littlecaf and glad you have a date @ememem84 .. the train keeps rolling on.
Think of me as I spend the evening wrapping. No excuse this year ..one thing I do have is time. Although it's never the festive merriment I expect when I loose the sellotape for the 50th time!! Better to be busy though!

Agree with the others @GrannyGoggles your words have been so helpful to me. thank you xx

@somewhereonthe517 im also weekly pacli but haven’t experienced any bone pain. I feel for you though that cannot be fun! Sending soothing vibes your way.

I am currently realising that the effects are cumulative. I’m 7 pacli sessions done of 12. Today I’ve felt so so tired. Combination of the chemo, the weather (dark grey wet) the craziness of the week (kids last week of school/hyped up for Christmas…!).

managed to get on and do things though. Went to town with DH and we had our usual Christmas lunch and shopping spree. Slightly different in that I had tonic water and he had one beer and I drive us home. In the past years we’ve had a couple of bottles of wine then shopped a little bit pissed! Still got everything we needed.

Piling in with the @GrannyGoggles appreciation.

I’ve just done pacli 9 of 12 @ememem84 and agree with the cumulative. I’m hoping the nausea isn’t worse this week. I felt really rough on days 3/4 and hardly moved. Don’t want to be doing that again this weekend! Really pleased to hear you have a surgery date. You’re on your way out of it. If my chemo go to date, I should be finished on Feb 26th, although looking at bloods I am expecting a delay somewhere.

Liver still playing up, so no alcohol until it is better - I’ve forgotten the taste already but would love a nice gnt. I’ve had two lovely visitors today, one who brought me a bottle of alcohol free gin (yes!!! Happy sole!). The other brought me the most magnificent home made Christmas cake that will have to go into storage until my liver is recovered as my dear friend has fed it extremely well. It looks and smells amazing - I’m the only one in the house to eat Christmas cake.

Agree. I’m on the downhill to the finish line. I’m so so proud of myself for getting through this. It’s as much of a mental battle as a physical one.

i love a no alcohol gin. The tanquerey is especially good.

@somewhereonthe517 In the rear view mirror was a phrase I used a lot this time last year. The conclusion I’ve reached as this year draws to a close, is that diagnosis and treatment are NOW in that mirror, and the process, thing, experience, whatever you want to call it is woven in to my story, a bulky, unattractive lump in the fabric, with a few loose threads dangling.

I had a fair bit of therapy last year and into this, supporting me through the cancer but also dealing with unresolved early trauma. It’s been messy, and it’s not fully resolved. What I’m trying to say is that diagnosis and treatment is very challenging, and a word I loathe, ‘triggering’; although there is more acknowledgment of the emotional and mental impact now, it’s tough. So, well done all of you for facing and dealing with the crap. Naming feelings and thoughts can help. Let’s stick it to the thought 😈

It is I who thank you for your words, they help me to heal. I hope you all have as good a Christmas as is possible and wish for better things next year

I feel like I've been given a reprieve - saw my oncologist and as I've had some horrible side effects, plus the whammy of double antibiotics for a tooth infection (including evil Metronidazole) and had a pretty grim week, he said I can miss this week out altogether. Yay! I've had a really good response so I don't need to make this session up, and hopefully I will be feeling a bit better for Christmas.

Just having my Phesgo injection today, and picking up some steroid cream for the awful rash paclitaxel has given me, and then home again! I'll be skipping out of this place.

I had my last oncology appointment before chemo which is a week on Monday. It's EC rather than the EC-T which I was originally told, which I think is marginally less to deal with. They were good at telling me what to expect, but I'm still quite anxious about it all, and with it I'm also rather cross today.

I took DH in for his Endoscopy and my appointment was meant to be 20 mins later but I ended up waiting for over an hour, went home and then got a call saying DH was ready for collection - 2 hours earlier than suggested. So back I went and had to queue 30 mins for a parking space which put me in in a bad mood and since then I haven't been able to shake it. I'm snappy with DH and the animals and just a bit fed up of it all really. Nerves I guess, and also a little bit disgruntled that everyone keeps implying that "oh well at least it's only breast cancer, that's easy enough to sort, compared to what your DH has". Which is true, but it still doesn't mean I'm finding it easy. And I'm currently doing all the stuff that he can't do, and it worries me about how the hell we're going to cope if I'm wiped out.

Sleep is a nightmare at the moment, partly due to the horrendous night sweats that wake me on the hour every hour pretty much, boiling hot and sweaty and then freezing cold 10 minutes later. I'm doing all the stuff they suggest but it ain't working - anyone have any bright ideas?! I've just realised I'm taking Menoforce sage tablets and forgot to ask whether it's ok to continue, I'll ring on Monday but does anyone know if they're ok with EC chemo?

On the plus side the Christmas tree is up and presents are wrapped which is probably the earliest ever.....

Lord above Frosty. What a crock of 💩you have got to deal with. Lean on others if that’s a possibility. And fuck off with the response of ‘it’s a starter cancer’ to a breast cancer diagnosis.

The reason you’re not finding all of this easy is because it’s not. Anxious, snappy, cross, disgruntled sound like very reasonable and understandable feelings.

@frostyfingers another voice saying cut yourself some slack. It’s like a weird game of cancer Top Trumps and you are expecting to be a carer when you are actually going through a very gruelling regime. Could you hire a cleaner/ housekeeper? Or ask the Community nurse team for a care assessment to put in some help for you both if it’s getting tough? I’m sure they would be sympathetic.

DH and I are both a bit grumpy this week. But it’s quite enjoyable indulging in Bah Humbug together. We were away last week having fun so we are behind on Christmas and don’t have family to feed or entertain so think we may skip a lot of traditional things this year. We are thinking of a Christmas Day bike ride with a thermos.

@frostyfingers agree with the others cut yourself some slack. It’s not easy what you’re going through ( even if it is “only” breast cancer 🙄). I cannot imagine having to then deal with something else on top. You’re doing amazing. Remember that. Xxx

can you see if you can find some outside support? Cancer relief charities where I am will provide cleaners/ironing/food deliveries etc. I’m guessing that similar would be available for you.

we’ve tried as much as we can this year to late back Christmas. Keeping it more simple.

@GrannyGoggles @TopOfTheCliff @ememem84 It's so difficult isn't it? I'm lucky in that I have 2 adult sons home at the moment and they are doing loads - shopping, cooking and general stuff around the house and we also arranged for cleaners a couple of months ago so in that respect we're ok.

The mental side of it is hard though, as well as admin stuff - I've been a bit madly clearing the office, sorting paperwork (getting all the important stuff together like accounts, passwords, poa, wills etc) and also taking rubbish to the tip and tidying kitchen cupboards. It's all displacement activity and since I'm not working I need to do something useful but DH won't engage with the financial aspect and it's frustrating. This is not going to go away anytime soon and if he can get his paperwork in order while he's well enough then it's one less thing to worry about, but he won't - and again, I do get why he won't but it's still annoying.

Christmas is pretty minimal this year, luckily we're going locally for lunch so I don't need to do any cooking and we've been low key on presents etc. My other complication that I have an elderly relative 2 months into a 3 month terminal diagnosis with a brain tumour and I'm desperate to get up to see them before I start chemo. They are a couple of hours away and at the moment we have a 3 day window next week, but only if DH is well enough either to go or be left at home.

God, what a moan, sorry! I have a nice day planned today, even if the weather is rubbish, and then shall blob about the house tomorrow trying to unwind.

I agree with all sentiment to be kinder to yourself frosty. From here it looks like a completely normal reaction and you sound like you are doing all you can to keep sane. Thinking of you.

Right now @TopOfTheCliff a bike ride with a thermos sounds like a fantastic Christmas day!! Imagine how quiet it will be. Bliss. I just might need to push my bike if alright with you x