Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Hi @JessJj1986 sorry you're here but very glad you found us. I'm older than you with older kids but received my breast cancer diagnosis earlier this year. Grade 2, no lymph node involvement, hormone positive, HER2 negative (all these acronyms are scary at first but become a familiar language, I promise). I had a lumpectomy and radiotherapy and then elected to have chemo to help minimise future risk rather than needing it for what was there originally. I completely agree with the others, this first waiting bit is absolutely the worst. You juggle a million different scenarios. But once you get some clearer answers and a clearer treatment plan, you feel so much more in control and are able to focus a bit more. For the nausea, I didn't experience this when first diagnosed so I suspect it is your completely appropriate anxiety but following my surgery/chemo experience the anti-nausea meds are excellent so hopefully your GP can advise. I got my prescription exemption certificate application form from the practice and found that as soon as I mentioned the 'C' word, the scary receptionists couldn't have been more lovely and helpful.

@SummerCycling I had the five day intensive radiotherapy & I'm triple positive BC. I think the five day is more likely if you've had a full mastectomy as then there is less remaining breast tissue left that is subject to the damaging effects of radiation.

@Scandimandy I couldn't get the zip bras done up! There is a bit of adjustment in the band size with the hook & eye closures whereas there's only one setting for the zip obviously.

I've just done a 6wk free Macmillan fitness course at my local leisure centre & now get half-price use for 6mths, which seems rather arbitrary. My local Maggie's does a free exercise class & there used to be a few more around before lockdown from what I've seen online but they've not resumed - presumably now people don't want to offer free stuff so much unfortunately.

Also re exercise, several friends sent me this today.

https://www.theguardian.com/society/2023/jun/06/walking-and-yoga-can-cut-risk-of-cancer-spreading-or-returning?CMP=ShareiOSAppp_Other

Struggle to get into yoga but may give it another go but as I've said before...walking solves everything for me so am determined to keep up with doing everything I can to get out every day even if just for 30 mins. I've had to cancel 2 further long distance Camino hikes this year because of my diagnosis/treatment and am determined that I will get to do them!!

Thanks @HauntedDishcloth I’ve been thinking about gym membership actually, might see if I can find any financial help for this around. I am quite fit, just fat as well 😁 I walk the dog everyday, she comes to work with me and we walk 5k every lunchtime, then weekends I try to do a longer one 7-10k at least one of the days. My aim is 10000 steps a day and about 1600 calories - I’ve lost 1.4 kg this week so very pleased with myself 😁

I think I’ll get one of each of the Bras to tey in that case @HauntedDishcloth what a minefield post op equipment is!

Yes our Maggies do a yoga course though I did one and maybe burnt a whole calorie that hour and seemed to be about 40 years to young for it. But it can be worth contacting local cancer things to see what they offer, our Maggies did a Where Now course for after, a bit random but nice of them to offer it. It might be worth asking at hospital if they know of exercise things, for some reason lots of these schemes seem to be word of mouth.

There are a couple of Facebook groups for UK breast cancer which are huge though I dip in and out, they seem to be a strange mix of forced positivity, daily positive post, as we apparently need to be positive every day, and things gone badly wrong in treatment.

I’ve got my last chemo this Friday- I’m very emotional about it. It’s a day that seemed so far in the future and I’ve managed to get through it. I’ve got radiotherapy next. I’m triple negative and still waiting to hear how many sessions I’ll need. Anyone any idea what’s likely? Just want to get my head round the next ordeal.
Bought some champagne to celebrate the end of chemo but reckon it’ll just stay chilling in the fridge for some time.

Thank you for sharing that article @Atreus - I also struggle to get into yoga but that’s given me the kick up the arse I need to get back into it, I know I feel better when I do it I just don’t enjoy it 😂

@LemonDrizzle10 I felt the same about chemo and felt strangely lost when it was over. I missed the support of the chemo nurses and also the feeling like I was actively doing something about the cancer if that makes sense. Also I’d been petrified of it and couldn’t believe I’d got through it. I have a different BC (ER/PR + HER2 -) with lymph node spread and I had 10 sessions of radio - 5 across the whole area and 5 “boost” doses only where the tumour had been.

@WorryMcGee how did you find your radiotherapy? I’m back to the unknown and knowledge is power!
I was stage 1 grade 3 with no lymph node spread. I’m hoping I don’t need 15 lots.
I bought cakes to take into the chemo unit this week- they’ve all been so lovely and I’ve felt safe in their care.

@Silkierabbit I think I'm on that FB group too. I'm considering whether to stay as I'm also a bit caught between the daily positive posts and the tricky situations. I think I like it here far more!

Thanks for the link@GayPareeee I don’t have a Nuffield nearby but it’s got me thinking about what I could do. The article was really useful @Atreus and interesting. I had stopped my yoga sessions as I didn’t want to wear my headscarf but maybe it’s time to restart. I enjoy walking anyway but it doesn’t really feel like exercise to me so I’m thinking I could try Nordic Walking…has anyone any experience…is it more challenging? I wish I could run but I’ve never managed to crack the ‘love’ for it.

I can’t remember who posted about the financial stuff but thank you. I need to look into esa as my ssp comes to an end soon.

Well done on getting through chemo Lemons I was her negative, hormone positive, in lymph node, 2 lobular breast cancers, 1 around 5cms squared and other 17mm. I was given 5 intense radios rather than 15 and I thought everyone was getting that at my hospital now but it maybe case by case. I was ned after surgery. Radio was really easy and c 5 minutes each time. Wierd thing was you were expected to walk with top off infront of male staff but guess they are used to that. And they preferred when I didn't take bra as it speeded it up. Its just lying on like a bed with arms behind you for 5 minutes and machine which whizzes round you, can't feel a thing. Felt a bit nauseous from the whizzing which could have been nerves. Worth mosturing a lot with something like Aveeno or thick hand cream and make sure you drink a lot, I saw online 3 litres a day but mine reckoned 2 was enough. I did about 2.5 and was fine. No burns. I was right side which is lower for side effects. Some people find it very tiring and accumulates but never got that, I swam a mile a week later. Though I wasn't working.

Atreus Yes I wasn't sure if that FB group did more harm than good so I left a few times and rejoined. Now have it so I can go in if want to but no alerts, that works well though hardly ever go in. It did tell me about cancer charities so that helped a lot but rest just made me anxious or like I had to pretend to be happy everyday and couldn't be honest. I needed a site with a daily moan and rant section where people can only agree and offer sympathy and no positive phrases or positive type solutions.

Hi @JessJj1986 and welcome. This stage is awful and nausea is a very reasonable response to the terror. I found I was fine until I started telling somebody what was going on then I felt acutely sick. Also every time I go to that ruddy Breast Care Unit or the chemo ward I feel sick. It’s in my head but it’s fine to take OTC anti sickness stuff like Stugeron which is slightly sedative and helps you sleep too. There will be lots of random scans and things while your team find out more about your breast cancer. The critical thing is the type and the grade. If it is HER2 positive or triple negative ( oestrogen and progesterone hormone receptors and her2 receptors) and/or grade 3 you will likely be offered chemotherapy first. They also now use immunotherapy as well which is amazing and improves the outcome massively. If it is ER/PR positive but her2 negative you might get away with just surgery and radiotherapy and hormone blockers. Be aware that the whole thing is probably going to take over your life for up to 18 months and will make working difficult.
I have had a triple positive BC and a triple negative BC in the last three years, both of which were aggressive but small. I have had chemo twice through, surgery twice and radiotherapy and as far as I know am now cancer free. I am on a preventative belt and braces oral chemo now for 6 months which improves the odds again.
I had the FAST 5 sessions of radiotherapy which came in during Covid for BC. It is triple strength but seems no harder to cope with than the traditional 15 sessions.
Re exercise: I decided to go back to my lovely BC yoga class this week. It is very gentle and we all go to sleep. No calories are burned but it heals the soul. We did our session next to the beach on Monday. Magical! Not all exercise has to be hard. I also went to Pilates in the park today and discovered lots of things have seized up and need stretching. I’m not as strong as usual but at least I was out there. The class were touchingly pleased to see me too.

@Silkierabbit I think we have an excellent Rant and Moan section here. Along with the virtual Rage Room and our hatred of the Positivity police we are the antidote to all the coloured ribbon brigade.

I am a bit stuck on diet. I am eating a lovely healthy plant based variety of healthy things along with kefir and kombucha for the gut biome. I’m not sure whether this is aggravating my Hand Foot syndrome but I really don’t want to go onto the white bread and spam diet that a low folate diet would involve. I’m just going to please myself and keep losing a pound or so a week. My bloods were all good so it must be keeping me healthy.
Sending strength to all. Long before cancer my mantra was It Will All Be Fine so it doesn’t upset me to mutter it through clenched teeth as people do horrible things to me. It is even stencilled on the side of my boat!
Top

Yes Top I think it was me that started the rant and moaning on here on my chemo steroids and there seems high demand for this section. 😂

I did see last night a thing where you can create a rage room at home guide, though it was £5k so a bit pricey, £4k was soundproofing though. https://www.checkatrade.com/blog/cost-guides/home-rage-room-cost/ Maybe we could launch a GoFundMe for a communal rage room.

@dotty2 - I had my appt - it wasn't the best - they didn't like my breathing to 20 as they said it wasn't always exactly the same - I may be ok tho as she thinks my heart might not be in the way ?)

Welcome to the thread - there are lots of super helpful and well experienced and informed peeps on here (just not me)

The waiting is the worst bit - once they started telling me what was going to happen it was easier . It's hard not to let your mind wander off on worst scenarios etc especially when you are young with little people at home - you wouldn't be human/normal if you didn't go there. Being busy helped n my E whilst waiting . Crossing everything and sending hug vibes to you .

@Remaker I think I would have to be honest about the soup otherwise she will keep on making it - perhaps say you have lots of soup and it's not your thing but if she wanted to make something suitable you would love xyz

@LemonDrizzle10 I hated radiotherapy because I won’t even get undressed in front of DH anymore so found lying topless with arms up and being manhandled into the correct position really awful (cried every time) but that’s my own issues - aside from that it was fine. I had no side effects whatsoever, no fatigue, skin didn’t change at all - I went to Greece three days after I finished my treatment, and I put sunscreen on/covered up but didn’t hide away from the sun completely, and I didn’t notice a change in my skin at all. I was expecting to as I’m very pale, burn v easily and have sensitive skin!

@LemonDrizzle10 - congrats on the final session. I had my radiotherapy mtg and I am scheduled for 5 sessions to start in July (I'm stage 2 lumpectomy hormone + and her -) - at the pre meeting they said they either do 5 sessions , 5 sessions and boost of 5 sessions or 15 total sessions.

I'm in awe of all of with your chemo etc - you are all amazing.

I definitely need to lose weight and get fit - I'm going to go walking and hopefully find somewhere to swim - pre covid I swam 3-4 times a week(badly !) but worked up to 80-100 lengths of 20 metre pool at a time .

I am thinking of going my nearest NT /English heritage type property so that the walking is n better surroundings than along the local roads. Not sure re yoga - did in past a lifetime ago .

I'm pretty bad tbh as I still have the odd (or more) f glasses of wine although try to eat healthily-not sure about taking supplements (?)

Sorry re the multiple posts but I don't want to ignore the lovely posters who replied to me & yet I can't figure out how to do a post mentioning everyone without losing it all - I think the letrozule is affecting me (!)

Hi @JessJj1986 I’m sorry you find yourself here but this group is the absolute best place I managed to find during my (ongoing) battle with BC. I’m 37, diagnosed with invasive ductal carcinoma with lymph node spread last August after going to the GP because I thought I had mastitis! My first (and only, now) DC was 16 weeks old at the time. I had a lumpectomy, then lymph node clearance, then 8 rounds of chemo and finished radiotherapy approx 6 weeks ago. I have decided, after much deliberation and heartache, not to take tamoxifen even though my cancer was ER+. I have my last oncology appointment in a couple of weeks and then I guess I’m back into the world trying to rebuild my life.

The first bit, where it was all scans and uncertainty and not knowing if it had spread and what the hell was I going to do if it had and why me and all the rest of it was the absolute worst bit of all. I thought it would be chemo, but it wasn’t, it was that first bit before I had a plan. It’s not been a picnic, but I have still managed to parent my DD. I enjoyed her first Christmas and her first birthday. I’ve been running and hiking and out with my friends. I took up Rage Cycling just before chemo started (thanks to @TopOfTheCliff ) and I just completed the Ride London 100 miler for Macmillan. My mental health has been v v shaky at times but physically, it’s been far better than I thought it would be and I was still recovering from a c section when I found out.

I can highly recommend our virtual Rage Room, where you can scream and shout and no one judges you.

Thanks @WorryMcGee and @BeaLola
The chemo unit rang me today- no radiotherapy is booked for me yet so nurse is contacting my oncologist. With luck I’ll find out on Friday. I’m hoping it’s all finished by the end of July as I’m off camping with DD and two lovely families we know - I don’t want to cancel this holiday after having to cancel all the others!

@LemonDrizzle10 I had the same thing - nothing booked in and I had to chase a couple of times. I rang the chemo team for help because they were always so kind and they sorted it for me but it was much longer than I thought it would be. I finished chemo on March 2 and I always said I wanted to be done before DD turned 1 in mid April but they couldn’t facilitate that - they did, however, make sure I was done before our holiday in May by sending me to a different hospital to get it done 🙂I didn’t chase until end of March though and I wish I’d started to make a bit of “noise” earlier. I was wallowing because my hair, eyelashes and eyebrows all fell out a week after my last chemo and I was so bloody angry and upset about it I forgot to do my cancer admin…

I had exactly a months gap between last chemo and radio starting (weekly chemo) and had a weeks holiday inbetween. There's a ct planning scan before where they put black dots on you.

@Fantasea thank you. Although, i think I’m going a bit crazy! My results were not post menopausal they are currently within normal range, I think that must be positive too. I’m trying not to read up or look into any of the results for the next couple of weeks. My appointment has come through for a week Monday, I’m going to try and keep busy as suggested. My current line of thinking is that there’s nothing I can do either way so keep as usual business as possible. It’s working to an extent for now, apart from when I wake up to wee multiple time throughout the night then I get the horrid feeling. The bladder is what is stressing me the most I’m on the toilet for ages as I’m retaining so having to strain to empty as much as possible. I suppose it’s better that the bladder is retaining rather than the bowel.

Hello all, I also had my last chemo this week @LemonDrizzle10 (yesterday) and feel very much as if I’m limping to that particular finish line with one one drug due to the numb hands and feet and very swollen legs which have gone down a bit this morning. (Bit worried about the legs because of the clots but I am on thinners) But I’m so glad it’s done…🫰and I can now plan surgery.

@TopOfTheCliff it sounds as if you have been doing some lovely exercise this week. That’s my next step I think as I should have a gap now before surgery.

My radiotherapy Dr was very keen to get me in and meet me but my time frame has really pushed out because of some gaps in chemo along the way. I asked the nurse when my first chemo was - 30 Nov so it’s taken 6 months to do 12 rounds. But it’s done!!! And Mr Fairy and I had a lovely lunch yesterday overlooking a wet and windy sea.

My hair is growing a bit and now I have a dark peachy fuzz occurring so that is also a positive. @WorryMcGee has yours grown back?

I know the feeling about all the admin, I now need to chase my surgery date I guess.