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

[LemonDrizzle10]

New thread - old one nearly full!

@BatshitCrazyWoman what a milestone! Bloody well done you xxxx

@BatshitCrazyWoman - d'oh, ongoing chemo brain. Huge well done to you! another massive milestone in this slog.

Thank you both. I'm back at the hospital next Friday for an ECG, herceptin injection and first Zometa infusion, so not saying goodbye to hospitals just yet 😂

@ememem84 how are you finding tamoxifen?

Just when we thought it was safe to get out of the water eh, @BatshitCrazyWoman !

@BatshitCrazyWoman finding it ok so far. Been taking it for 10 days now. Initially felt a bit nauseous. But couldn’t work out whether that was because of the drug or because I just hadn’t eaten much!

I take it as night time - my gp told me ages and ages ago to take any one a day meds before bedtime so you hopefully sleep through any side effects and apparently your body at rest is more able to absorb the meds.

I had an exercise clinic at hospital yesterday. I have lost 5kg since 25 feb (my surgery day being the last time I knew what my weight was!).

Oh that's good advice about taking it at night @ememem84.

I am having physio/exercise sessions too as my weight (and muscle) has got scarily low. I was racing towards being 7 stone, which is 🤯😱 And I looked awful - scrawny and ill.

I've gained a few pounds, and am doing my weights now to get my strength back.

Thanks to those who responded about working. I guess the answer is 'who knows'

I think that's the case @AlwaysALargeSauvignonBlanc It's probably better not to put any pressure on yourself, and see how you are.

I was diagnosed in august of last year and have been off sick since. I go back to work on a phased return on may 19.

I thought about trying to work through treatment but I ended up feeling not capable of it. The EC chemo wiped me out and then the paclitaxel was weekly where I felt a bit spacey for a day or 2 after.

it was also easier for me and my clients and my colleagues to draw a line in the sand and say no. Not working.

My god I feel awful this time 😔. Day 6 and I can barely do anything today, stomach upset, bone aches, fuzzy head and absolutely no energy at all. We should have been having a nice family weekend but there’s no chance of that and it feels like such a waste of a bank holiday. Every morning I get up and think it’s going to be better but no luck yet.

I hope everyone else is managing better than me!

So sorry @frostyfingers - it's just shit isn't it? Are you 6 days after one of the 'T' chemos? The bone aches sound like it.
I'm finding the 'cumulative' thing to be true - I have my sixth and final chemo coming up on Wednesday, and I'm still v tired after the last one. Also I read for some people hair grows back on docetaxel (having fallen out on EC) - but my hair is still falling out!
I know what you mean about the waste of a bank holiday. So looking forward to feeling better and enjoying future bank holidays properly...

I'm so sorry you're suffering, @frostyfingers Chemo is not for the faint -hearted 😔 How many more do you have to go? It's definitely cumulative, after my third EC I just gave up thinking I'd have any days when I felt even vaguely ok. But now, nearly three months after all my chemo finished, it's like a distant memory. You'll get there. The worse I felt, the more I thought the chemo was doing its job, killing the cancer.

@breastcancerpanic my hair did stop shedding/start growing back on paclitaxel, but I lost about 80-90% of it on EC, so maybe any shedding was less noticeable?? And then I had 12 doses of paclitaxel and I can't remember at what point I noticed regrowth. Not straight away anyway.

@breastcancerpanic @BatshitCrazyWoman Thank you for your kind words, they mean a lot. I feel a tiny bit better today but still very feeble, I fleetingly thought of going to the garden centre to buy some bedding plants but know that will be too much so have shelved it for now. No idea where the aches came from as I haven’t had them before. I have one more EC to go, in theory in 3 weeks but more likely it will be 4, and am absolutely dreading it, if it’s worse than this then it’s going to be horrendous. Tomorrow is my call from the radiotherapy department so I’ll presumably know exactly how much longer I have treatment for. I know it means that the light is glimmering at the end of the tunnel but it still seems like a long way away.

I have, 🤞🤞🤞managed to keep my hair, it’s thinner and in not great condition but the bulk is there, which seems to disappoint some people! I know that’s not really true, but the “oh, you look well” comments to me translate as “you’ve got your hair so it can’t be that bad”. I am well aware that’s a ridiculous sentiment but god this disease makes me prickly and over sensitive, just because I look outwardly ok does not mean I’m ok inside and actually the cheerful comments, well meant as they are do really grate.

Good luck on Wednesday @breastcancerpanic, I really hope it isn’t too awful. What’s next for you, treatment wise?

Ahhh @frostyfingers I'm sorry to hear you're feeling so crap. I hear you on the garden centre- our garden had got quite out of hand and I had been working so hard on getting it back under control. It's as bad as it ever was now 😟 Hope things start to improve for you soon.

I have my pre-op meeting tomorrow then surgery on Saturday. I've really struggled with getting my appetite/ taste back after the last chemo. DH made a lovely roast lamb yesterday and it's the first meal I've properly enjoyed in a long time! Am fed up of being tired. I can't even walk to our local shop at the moment. Luckily DDs 2 and 3 are home at the moment so I'm very well looked after. But I'm never happy - I'd like to have DD1 home too...

Ah @frostyfingers that’s bloomin rubbish. I agree, it’s cumulative and had to surrender to it in the end. Got so fed up of Netflix! I wound a heated blanket to be so helpful for the bone aches, I’d sit on it on the sofa and wrap myself in it. I’m doing that now post chemo as I get used to letrozole, with the added benefit of hot flushes so I also wear an electric neck fan! Oh the glamour.

Good to hear that hair is behaving and I totally share the thought on what people can stupidly say. My hair took a battering on EC although very little impact on paclitaxel. I am 6 weeks Pfc and still shedding although not quite as badly. I’m told shedding can continue for about 12 weeks Pfc. My friend had a look at my scalp and thinks she can see regrowth. I definitely see signs of regrowth elsewhere on my body. I’ll keep on with my combover arrangement for the super thin patch on top.

@Poledra you’re moving through treatments. Hope the pre op goes smoothly tomorrow. Do you have any further treatment planned post- surgery?

Just checking in. Breast cancer, triple negative. 4 rounds in to chemo - paclitaxol, feeling okay physically, just had to do the big shave and told everyone I feel good about it. Everyone's been so supportive and said I look great. I hope I believe them (and myself) soon.

Can't be arsed with wigs as they're so uncomfortable. My question is how am I supposed to wash my head? Shampoo? Is there a good sensitive head-specific wash or do I just use moisturising body wash? Am keeping it completely bald - do I need to use a balm after shaving? It's so itchy!

Can also vouch for heated blankets. I also have a weighted one. On particularly uncomfy days I am under the weighted one, with a hot water bottle, and a big beanie, and headphones. Husband calls it 'bug time' - as in snug as a... and during this time he is not to let my mug stay empty!

@GoodAtCookingCrumble I use neals yard rosemary and cedar wood hair treatment balm. I’d massage it in and leave it overnight pre hairwash during chemo and have used it for pre wash today.

when my head got really itchy and with a few scabby bits during chemo (I know!), I used eucerin urea calming scalp treatment. Love the name bug time and well done to your dh.

Thanks! Heading to boots now on my daily waft about.

It's just so flipping boring. I had a job which told me what to do every day and where to be - finding out that under my own steam I am so incredibly unproductive and unable to establish routine!

@GoodAtCookingCrumble this site has useful information https://www.cancerhaircare.co.uk/scalp-care-guidance/

Triple Negative Breast Cancer

Any other tnbc seen the article in the Daily Mail ( I know!) about the study of certain oils on rats? Just mentioning it in case it's useful.

mol.im/a/14615257

[Just read this back to myself before posting - sorry I have no idea why my posts are basically long essays - totally get this might be too long a post to read!]

Hope everyone is doing okay.

@GoodAtCookingCrumble I totally know what you mean! I have also felt like the lack of structure is difficult and makes me feel a bit panicky sometimes. It's like some of the time I just feel too tired to even plan anything properly and the day just sort of drifts. I feel keen to get some control back - e.g. just as a tiny example I feel like some parts of the house are a bit of a mess and I just don't seem to have the energy to tackle them (and they don't really matter - dh is making sure everything essential is being done). But whenever I look at them I feel a bit defeated by it all.

@dancingwhilstfacingthemusic I also want to do heated/weighted blankets, but then the hot flushes kick in (really hate these! effing stopping HRT and having chemo...) and I feel suddenly nauseous and need to throw everything off. I'm finding it better to try not to get too hot in the first place, but I miss feeling really cosy!

@frostyfingers Can really identify with being prickly and oversensitive - not that it sounds like you are, but I definitely am! Indeed I realised recently that sometimes I am behaving a bit like a peevish invalid. I can't help it - being tired just seems to make me irritable and I'm controlling it as best I can, and honestly it is just so difficult coping with everyone's reactions! I am super-sensitive to anyone looking excited at the shit that is happening to me - particularly in the looks department! I think that my confidence may have fallen out along with my eyelashes (my Samson's hair... I took them for granted, and didn't realise how different my eyes would look without them). On the other hand, I have a couple of friends who I feel completely are sharing the journey with me and always make me feel better, not worse, and if this whole thing has a silver lining it is the time I have spent with them this year and the knowledge that they are rare true diamonds.

@Poledra I'm happy to hear that your taste does eventually come back! I'm so over everything tasting weird. Right now I'm in the brief steroids patch where food is not exactly tasty but is appealing - but I know that the sawdust mouth patch is on its way, where even cucumber seems too dry to eat, and tastes of nothing in any case.

@BatshitCrazyWoman You give me hope on the hair growth - I can't wait. And I'm loving this sentence: "nearly three months after all my chemo finished, it's like a distant memory"!

My update: had last chemo (docetaxel) today - all seemed to go okay and am currently somewhere between wired from steroids, tired, and feeling a bit weird.
What's making me feel positive is that over the coming weeks as each side-effect swings in, I can (hopefully) say to myself that this is the last time.
After this I have an oncology appointment in a couple of weeks to talk about hormone treatment (yesterday when I had my bloods taken they have also taken some to see whether I am in the menopause and I guess I'll get the results of that when I see the oncologist) and then - maybe in 6 weeks time - I have 3 weeks of radiotherapy.
Someone I read said that after the doctors had finished with them they felt like they were being handed over for the next stage of recuperation/convalesence/rehabilitation, and I feel like that will be a good way to look at it. I'm thinking of various things I might need to look into doing - possibly...
(1) A haircut - once there is some new growth to cut!
(2) Hygenist and dentist to check all is still okay
(3) The 'moving on' cancer course, and after that talking therapy if needed.
(4) Help with getting the right prosthesis and general clothes refresh. I'm thinking of starting by 'shopping my wardrobe' (can't spend much on new clothes right now - though may buy one new summer thing) and paring down to things that look good even with the new prosthesis set-up.
(5) Maybe going to physio to assess whether I am unbalanced or anything after the surgeries, and what strength has been lost. Though may skip this for cost reasons.
(6) New exercise programme. Possibly with a personal trainer to get me started (though see cost issue!).
(7) This is really pretty important (given the repeatedly mentioned cost issues!) ... I need to get back to work properly. I have been doing the odd week through chemo and had a few meetings/done some admin, and work have been very supportive, but soon I will need a realistic plan for the return. I already know my teaching timetable from September so will need to prep for this over the summer, and will need to think about when to start what.

Thank you for that list @breastcancerpanic , I have the same feelings. I just say, although I have registered for the moving forward course, the last thing I want to do now is sit and talk about cancer so it will have to wait for me to be ready.

I’m 7 weeks Pfc and have my first client in almost a year coming in a fortnight. I’m a bit nervous! I’ll spend a bit of time in my office going through things and hopefully will click into it - it’s a big step after illness. I’ve put myself on a greatly reduced workload and will have to see how it goes.

@breastcancerpanic Great list! I've definitely got some of those already - I've got the card of a specialist women's health coach/personal trainer and am frantically squirrelling away funds so that I can go and see them. My no 1 objective is to lose the weight and get my strength back, I know I'll feel so much better once I have that back in my control. I hope your battling through ok this week. Where I am we have access to some free/subsidised treatments via a referral from our hospital based Macmillan unit and they offer among other things pilates, yoga, reflexology, acupuncture as well as counselling - is there anything like that you could access in your area?

Work wise I'm doing a little, but because I'm part time and home based I've managed to keep that going quite well, although anything that requires deep thought or concentration panics me. Hopefully that will improve.

I had my radiotherapy call and am slightly clearer on the plan, although the person didn't know whether I'd be having 10 or 20 sessions, it depends on the surgery I had and slightly alarmingly she asked me, rather than the surgeon. Quite why she didn't check that out first I don't know. That's going to start 3 weeks after my last chemo and going with the assumption that it will be delayed because of my useless white blood cells I should be finished with active treatment by the end of June. I haven't given much thought to afterwards, I find forward planning a bit of a waste of time at the moment. I'm not sure about the moving forward course, rather like you @dancingwhilstfacingthemusic I think I might want to slam the door behind me and not revisit the experience, but that may change.

Someone also mentioned that acupuncture was helpful for hot flushes so I'm going to try that out once treatment is done, has anyone else tried it?

I'm just about getting back to "normal", still so tired and unmotivated though, the garden is growing madly and I can't even summon the energy to be bothered by it! I have arranged a couple of coffee & cake dates next week so that I have something to look forward to, and we are having our Easter family meet up this weekend since last weekend was so crap.

Onwards....

It’s the end of my second full week in London. Radiotherapy 11/15 today.