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Cancer Support Thread 87 - everyone here is so supportive.

983 replies

LemonDrizzle10 · 22/05/2023 05:53

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EachandEveryone · 14/06/2023 00:45

I mean theres no pain its just that when im going up the stairs or walking they feel heavy. I did a big walk in London on Saturday and Im wondering if its partly that.

i cant concentrate on books so you did very well today. I do tend to rely on audible and far too much Netflix! Ive only got one more round left. I can feel its still there but smaller. Much smaller.

im wide awake now it must be seeing live music fir the first time in god knows how long. Its ignited something in me 😃

Atreus · 14/06/2023 05:08

@EachandEveryone how fabulous!! Am I allowed to be green with envy? I also had Harry Styles tickets for last night. I'd originally bought them for me and 3 friends to celebrate the end of my treatment, to symbolise getting back to 'normal' and to thank them for being in the inner circle of the few people I'd told about my diagnosis. But then I found out my treatment wasn't finished after all and that I was going to have to have chemo and that the concert would only be a week after my first treatment. So I couldn't go, and one of my daughters and her friends went instead. They had an amazing time!

So instead of seeing Harry, last night I took myself for a long walk and felt very sorry for myself. None of the friends I invited to the concert have messaged me in the last few days to see how I'm feeling and my husband, who is off on a walking holiday with a friend, spent the evening sending me photos of the cool beach bar he's sitting at. I wanted him to go as his friend has stage 4 cancer and it was already arranged way before my chemo was scheduled but they chose to walk a Camino section (which irrationally feels like he's hijacked something that is 'mine', especially when I've had to cancel 2 Camino hikes this year because of my diagnosis). And whilst I just responded 'how lovely', I actually just wanted to tell him he could stick his photos up his arse.

And breathe.

dotty2 · 14/06/2023 05:50

That’s pants @Atreus you’re definitely allowed to be cross. Missing out on stuff is such a big part of the cancer shitshow.

I have a big work thing today but was kept awake by the heat and anxiety dreams about having to alter Dd2’s prom dress. Think I’m going to go for a short 15 min run before everyone else wakes up.

@Peppapigboresme , welcome. I’m sorry about your daughter which must make it all more challenging. I have BC diagnosed last August.

SierraSapphire · 14/06/2023 05:52

@EachandEveryone ooh, we’re going at the weekend. I’m going a bit mad with activities at the moment since I did nothing for four years as I was looking after DPs then lost half my business during Covid with no support, then cancer. I’ve got a sparkly top and feather boa to wear!

@Atreus it’s shit to miss out isn’t it? I had friends during/after Covid showing off about all their house alterations and money for holidays when I was financially shafted and only kept my head above water because my DM gave me money. It was difficult to listen to.

Greyandrare123 · 14/06/2023 07:03

Hi Ive just read through this supportive thread. 'Living with cancer' is definitely achievable.
Me Im 54 with stage 4 breast cancer in all my bones and liver. Been at this for 4 years. Her2 +++.
Had radiotherapy x2 to start with and that got me walking again. Taxotere + herceptin + perjeta for 6 months. Phesgo for 2 years. Kadcyla affer liver progression for a yeat. Now Enhertu which has just got pan status so can be used with other cancers.
Generally I feel fine altho Enhertu is somewhat tough at times with its extreme tiredness side effect. Im waiting for my hair to fall out and at cycle 2 it hasnt budged and in fact seems thicker. I have a wig in a pixie style on standby anyway.
Im so over it all. The constant medical appointments are aggravating. I savour the weeks when I have nothing.
I work 3 days a week as a teacher in the nhs. That keeps me going. Not because I love it, but the level of drama in my team keeps me distracted.
I have a v supportive husband whom I dont really involve in appointments now as they have become so routine. Ive a couple of friends and many have hit the kerbside. I am disabled thanks to bone mets and use a elbow crutch. The most devastating part of this is Ive got a 'hunchback' and a crooked neck. In the winter it doesnt seem that noticable but this time of year I look so crooked.

lucysmam · 14/06/2023 07:22

@TopOfTheCliff your oracle cards sound intriguing...what do they do? I'm off for a google!

Speaking of woo; I was gifted a small bag of various healing crystals yesterday. I have no idea if any of that stuff works, but the fact that someone thought about what they were gifting means I will take them to chemo and appointments with me, and appreciate the sentiment behind them if nothing else.

@EachandEveryone I'd expect achy legs after a gig, especially if you were standing. We have Lovejoy tickets for September & I don't know whether to keep them & hope I'm ok to go, or sell them on for someone else to enjoy.

LarryStylinson · 14/06/2023 08:07

@EachandEveryone I'm green with envy too 😍

@Atreus I've just snorted at the kale comment. My mother was on the phone yesterday saying now you can fully commit to a completely clean diet, zero sugar etc. 🤦

@Peppapigboresme do you have a good support network for you and your daughter? I talked my home life shit show through with my oncologist so they worked with me to make sure home was manageable around treatment. Macmillan offered to put their carers in and my daughter's respite also helped as much as they could.

dotty2 · 14/06/2023 08:27

@Greyandrare123 - thank you for sharing. That all sounds tough, but it's good to hear from people who've been at this a long time. I heard a really interesting talk the other day - it was in a work context, and the speaker was talking about her work as a charity CEO. But it really resonated with me and the whole cancer experience. She said that she thinks people talk too much about resilience, which can be a bit glib, and make it sound like you can just bounce back from challenges and be unaffected by them. She prefers the term 'endurance' which acknowledges that sometimes life is really hard, and you just have to sit with it, and live as best you can through it. (Also I was amused by the idea that the drama in your team keeps you going!)

dotty2 · 14/06/2023 08:30

Also @SierraSapphire and @EachandEveryone - I took DD2 and her friend to see HS in Coventry on the day my radio finished. Felt like a good way to celebrate, though I did have to sit down some of the time. DD1 was supposed to go but had an exam panic. (Just as well she didn't really, as we didn't get home until 2.30am). I can't claim to be a fan but it was a great evening - he really puts the effort in. My borrowed boa did stain my favourite jacket pink though 😂

SierraSapphire · 14/06/2023 08:37

My DD was supposed to be going to Coventry on the Tuesday @dotty2, but she was in hospital the week before and then couldn’t arrange her student placement to be able to go, so bonus we got resale tickets and I get to go too. I am looking forward to it!

TopOfTheCliff · 14/06/2023 08:44

@Greyandrare123 welcome to the thread. It sounds like you will be able to advise us not the other way round. I agree about keeping DH out of the hospital stuff. Mine is allergic to hospitals and gets all sick and faint just walking in the doors so better to leave him behind. It’s just as well he isn’t the patient or we would be in big trouble. Well done on keeping working.

@lucysmam the oracle cards are like Tarot but more wholesome and without the witchy vibe. They are just well meaning mantras with a pretty picture. You can choose one for the day, month or year or to help untangle an issue. I discovered them in a book I was reading and bought some out of curiosity but it’s surprising how often they come up with a totally apt message for the day. After practising evidenced based medicine for 37 years and submitting to all the chemicals offered for three years I am up for a bit of woo and white magic.
I have been eating a very healthy plant rich diet too and I can honestly say my arthritis pain has reduced since I cut out most meat and carbs. Coincidence? Probably. But it’s a bonus. I’ve got some crystals too. Amazonite and Howlite or pretty green and white. I was given them by a kind but nutty lady who made my DDs wedding dress last year. They bring calm and hope or something.
My organic allotment is part of my therapy so growing kale is all part of the recovery plan. As long as it brings joy bring it on!

Lisdeflores · 14/06/2023 08:48

@TopOfTheCliff I was in the the UK capital of 'woo' yesterday ,Glastonbury. I've always been quite sceptical about 'woo' but I really wanted to investigate more but it was to hot yesterday to do anything but eat and drink and then get home and hide in the shade. When it cools down I will take another trip. I hope your regime eases up on you soon it sounds tough x

TopOfTheCliff · 14/06/2023 08:59

Thanks @Lisdeflores the Capecitabine is manageable but they sell it as a light version of chemo and it bloody isn’t! I have had to shelve a lot of my plans for this summer because of the exhaustion and the impaired immunity and I am pretty fed up about it but I will get through with my usual tough insouciance and the help of the crystals and kale 😂

SummerCycling · 14/06/2023 10:54

People saying about Sarah Beany, I haven't watched it and I don't think I can face it. Reason for that being I expect she has private insurance and is presenting it as though the NHS is that quick and generous.

Does she say which breast cancer disease she has? Is it TN, HER2, HR, inflammatory etc? This makes the most massive difference.

Anyway, back to the private vs NHS:

I don't expect she had to wait 27 days from referral to first appointment like I did. I rang PALS in tears, my GP emailed etc etc and I finally got a cancellation after 18 days.

I don't expect she had to wait a further 3 weeks for biopsy, so 38 days after referral.

She seems to have been given a free wig? Me? Nope, no wig. I was left to get on with it being totally bald.

Was she given a mastectomy bra or anything? Me? Nope. Just left to get on with being one breasted.

I was very locally advanced on diagnosis by the way, so it's not that I was triaged low with a small or slow cancer: my tumour was over 100mm and so many lymph nodes cancerous they couldn't count and simply said 'multiple'. Grade 3, so the fastest growing. HER2 so highly aggressive, poor prognosis. Hormone negative.

Am I bitter? Most likely yes, because I suffered terribly waiting so long at the beginning I nearly had a breakdown.

At least things went faster after that, I mean once chemo started on day 55 after referral.

Scandimandy · 14/06/2023 11:21

I'm with you on that @SummerCycling I started following her on social media when she posted a pic of her hair growing back and I had just been diagnosed but she is already winding me up by promoting the band her Sons have started called "The Entitled Sons" whenever she does any media and social media stuff and I can't stand the nepotism. I could never watch her on tv either because her Husband gives me the creeps, there is something wrong with that guy!

SummerCycling · 14/06/2023 11:46

@Scandimandy

Oh that's interesting about promoting her sons' band - how annoying! I also dislike nepotism like that.

I honestly know very little about Sarah Beany, but she was apparently diagnosed in August and has already finished treatment. I knew in May and still have several months of my treatment plan to go. I hope she made it clear for example that

(1) some people are more advanced on diagnosis
(2) some people have a poorer prognosis on diagnosis
(3) she has private insurance and/or
(4) being well-known and filming, she got preferential treatment on the NHS
(5) she has no financial worries or issues getting herself to appointments
(6) I doubt she had to wait hours in a waiting room for appointments with not enough chairs for people to sit on
(7) etc etc

She had treatment in Yeovil and also at the Marsden in London. How come? Do other Yeovil patients (NHS ones I mean) with similar diagnosis also get that?

Do the other NHS patients in her area get their appointments and treatment as quickly as she did? And all the other things like wigs?

It's important that documentaries present an accurate picture. Maybe I am bitter and sceptical, but I suspect that programme was all 'oh so brave' 'look at me I'm so vulnerable/I'm a fighter / my poor children' etc

I'd better shut up now, I think 😂 haven't even watched the programme (!!!)😂 It is actually a good thing that cancer is openly discussed, so good on her for that. Although I'd rather watch a programme about eg 5 different NHS patients in different parts of the country, all NHS and see a more realistic portrayal. I suppose a lot of viewers only watch when it's a famous personality though.

SummerCycling · 14/06/2023 12:03

Greyandrare123 · 14/06/2023 07:03

Hi Ive just read through this supportive thread. 'Living with cancer' is definitely achievable.
Me Im 54 with stage 4 breast cancer in all my bones and liver. Been at this for 4 years. Her2 +++.
Had radiotherapy x2 to start with and that got me walking again. Taxotere + herceptin + perjeta for 6 months. Phesgo for 2 years. Kadcyla affer liver progression for a yeat. Now Enhertu which has just got pan status so can be used with other cancers.
Generally I feel fine altho Enhertu is somewhat tough at times with its extreme tiredness side effect. Im waiting for my hair to fall out and at cycle 2 it hasnt budged and in fact seems thicker. I have a wig in a pixie style on standby anyway.
Im so over it all. The constant medical appointments are aggravating. I savour the weeks when I have nothing.
I work 3 days a week as a teacher in the nhs. That keeps me going. Not because I love it, but the level of drama in my team keeps me distracted.
I have a v supportive husband whom I dont really involve in appointments now as they have become so routine. Ive a couple of friends and many have hit the kerbside. I am disabled thanks to bone mets and use a elbow crutch. The most devastating part of this is Ive got a 'hunchback' and a crooked neck. In the winter it doesnt seem that noticable but this time of year I look so crooked.

@Greyandrare123

I'm so happy to 'meet' you! I am also HER2+++ and we are rather rare I think, most with HER2+ are also HR+ so I think that is 'luminal B'(?) with a better prognosis than HR-neg.

My guesstimate is that we HER+++ HR-neg people are around 4% of BC patients?

I am sorry to hear you are stage 4, on harsh treatments and especially that it's given you a 'hunchback' and crooked neck. That sounds very painful, and also distressing. Is anyone helping you at all with those things? Some years ago I had a friend with a 'hunchback' and a crooked spine shape, but she had it from birth, and she was constantly receiving a lot of spa type therapies, but that's in Germany where they have lots of spa holidays paid for by the standard national health care. She had specialist massage, aqua-therapy etc etc and found them helpful. Hers was from a totally different cause though, so the treatment is maybe completely different.

It's great and personally very encouraging to me to hear you're working and that it keeps you distracted. I can absolutely imagine that, and also that working gives a schedule and purpose in the way that work does. I am looking forward to getting back to work for similar reasons (and in my case the money too), I just really need my chemo-brain to lessen and the peripheral neuropathy too, so hopefully...

I'm stage 3, not 4; my prognosis was poor on diagnosis. Chemo was effective (4 cycles of EC, then paclitaxel and Abraxane) which meant my prognosis was revised to good, but nobody can say whether it will come back or not. I am also on Phesgo like you, but 18 cycles and I had surgery + 15 sessions radiotherapy.

Could I possibly ask, were you stage 4 on initial diagnosis, or did you have this in the past and it returned?

So lovely you're here on the thread xxx

AGreatUsername · 14/06/2023 12:18

I found the Sarah Beeny doc really good. She is very positive and upbeat and I think brave to film what she did. She used the NHS afaik but did possibly user her position to speak to specialists about the future of treatment etc.

I didn’t mind the nepotism either to be fair, I big my kids up when they do things so why shouldn’t she? They seemed like nice, grounded boys.

She is a celebrity and as such has advantages over us but I thought it a thoughtful and grounded show. Also I was diagnosed in may and done with treatment by November as I simply got lucky with no delay. I don’t think she necessarily paid to be seen faster. We also get free wig fitting and wig voucher here so not dissimilar there (although ours is in a private wig shop where hers was a hospice so possibly nicer there, and she no doubt paid for some much nicer than NHS wigs!)

SummerCycling · 14/06/2023 12:42

@AGreatUsername

That's really good to hear!!! Also about your own treatment being so fast.

I'd like to know for sure if she was private or NHS or just portraying it as though she was only on the NHS. I do honestly suspect she had private care.

Chemo is done at NHS centres for private patients, but they have private nurses who they actually get to see and chat with. I see it each time I am at the chemo unit and was wondering why certain patients got such lovely long chats with a nurse each time - the chemo nurse explained they were private patients. They deserve it, they pay enough money for those extras, but I hope Sarah Beany has been transparent about that and not misleading (not sure why I am so bothered really!)

Silkierabbit · 14/06/2023 12:57

Welcome Greyandrare123 Sorry to hear about your diagnosis.

I also watched the Sarah Beeny in full. It says she used NHS Yeovil Hospital was shown and a hospice. Agree her treatment appears fast tracked compared to average by a few months presumably due to her fame though tbf it can vary but a film crew watching probably helped too. We also don't get free wigs here but that does vary by area and I've heard of people getting on nhs. Her chemo as well she had a beautiful countryside view and big window to herself. We get a view of parked cars, parking fines and a large very shared room with 1 toilet between 16 or so. Mostly I thought it was fine, easier to watch than expected, was avoiding it, and she appeared to be hiding her distress maybe from her kids but you could see tears so I don't think she found it easy. I liked seeing husband and kids and glad kids seemed OK, I thought husband seemed nice. I think she did say type briefly. Very sad about her Mum dying at 39 when she was 10. Sarah actually was quite like me, off researching everything and quizzing everyone and I also had an operation moved to private in Nuffield on NHS and oncotype paid for on nhs and even a free bra when I was crying, supposed to be 20 pounds. Didn't need a bra but was nice of nurse. It didn't really reflect the state of the NHS though, the nurses on their 13th hour, the emergencies coming in with nowhere to put them, the having to go via pals to get seen within timescales, the leaving hospital with no pain relief but that's really another film, the consultant who tells you maybe at stage 4 but hasn't got time for questions. I didn't like the if you get breast cancer don't be anxious at end like its nothing but think it was well meant. And I think the film showed it was difficult but does end.

HauntedDishcloth · 14/06/2023 15:27

@SummerCycling I had my chemo as a private patient at an NHS patient. I had a private room and a separate toilet. No separate food. I actually found it very isolating as I was aware of all the other patients together in one big room nearby, chatting together. Also one time, I was waiting for a very long time (this time for a Herceptin injection); I stupidly didn't say anything as I didn't want to come across as the entitled private patient interrupting the busy nurses & it turned out I'd been forgotten about being tucked away in a room off the main drag. I've also had scans at NHS facilities as a private patient and these appointments have been very early or late in the day outside the NHS main day appointments.

I felt very guilty about getting my breast reconstruction done much earlier than on the NHS compared to some women I meet up with at a local reconstruction group, but then again I'm not taking up an NHS space. It's purely that my partner has private insurance through his work that I've been able to go privately. It seems unfair.

@TopOfTheCliff Before I started Kadcyla I was referring to it as "chemo-lite" for some misguided reason. It was nowhere near as bad as the FEC-T for me but it wasn't exactly a breeze (& certainly not on my liver as that's why I had to stop it halfway through).

Hi to all the recent new thread members 🙂

Greyandrare123 · 14/06/2023 19:09

Hi all
Thank you so much for your comments on my introduction. I cant link names on my phone so Ill just go for a general point based reply type summary.

  1. Endurance. This has hit a note with me. Resilience is one thing but often its a grit the teeth, head down and plough through situation. But not every day. Today I am feeling so much brighter. Ive been to the gym, did weights and met my friend for lunch. Ive laughed quite a lot today and I think Ill feel like this for a few days now. I dont feel exhausted at all. Some days I feel like shite but not with the side effects, its more a pyschological weariness. I had a 7 week break in between Kadcyla and enhertu. Id convinced myself I was going to die or at best go into decline when the reality was I felt brilliant for 7 weeks so a lot of the issues are the drugs. For sure.
  1. Im ER + PR + and HER +++ The Her2 always gets treated and has given me access to Enhertu on the cancer drug fund. Enhertu is shown to really benefit HER2 + and ++ but its not licensed in the UK for it but the US are already using it. Being HER2+++ has advantages as its not common but it is treatable with the miracle drug herceptin combined with other formulations. My next line will be cape + tunicaclib + herceptin. Enhertu had shown to protect the brain and cns too from metastatic spread. Im here for it.
  1. I am de novo so full on stage 4 at diagnosis. I went to ED after my ex boyfriend gave me a hug which fractured my neck. They thought I had multiple myeloma at first but then they saw a 1mm spot at the back of my breast, biopsied it and the rest is history. I couldnt really walk at first and was in agony. Thanks to radio etc I can walk 7 miles now. The onc says to me 'you have got better' and I know the score and my expiry date has never been mentioned. I have denusomab every month subcut for bones. You usually have it 3 monthly but Im getting it every 28 days still 4 years later. I got referred to the spinal surgeon initially who reported back 'there isnt enough bone left in her spine for me to fix anything to it' . That was a bit of a shock. I think my bones have healed now as they cause me no problems at all. I get zero pain.
  1. The hunch. It makes me feel old. Also it annoys me as I need people to stand in front of me and I get fed up asking 'can you stand in front of me' Im quite vain and want to rely on my natural good looks not my personality to make a good impression.
  1. Sarah Beeny. I generally find celebrity cancer documentaries difficult. For one, you never see them waiting for hospital transport. Being poor or struggling and having cancer is another level of stress beyond reasonable. I am all for showing the advances in cancer which have been phenomenal but when you dont have access to money, beautiful surroundings, the best wigs you are already on the back foot. Wigs are hit and miss and the lighter ones with a good parting are v expensive. However some cheap wigs are amazing too. If you have a wig find a stylist as they usually have 40% too much hair. They all need a good thinning out. Wig tape and headbands are good keeping them in place.

Importantly my culture identity is not cancer. Cancer is attempting to take things from me but Im always one step ahead with my wigs, and keeping well. I have found lifting heavy weights has been instrumental in both my mental and phsyical health. I use static machines to keep stable and literally push weights until im knackered. I told the onc I was thinking of doing powerlifting and she said 'go for it'

LarryStylinson · 14/06/2023 20:04

@ClashCityRocker how's your leg doing? Just done my last injection, hope yours are doing the trick!

SummerCycling · 14/06/2023 20:09

@Silkierabbit

Thanks for the very helpful and thorough review of the Sarah Beany programme.

They might have shown NHS Yoevil Hospital, but I read she was also treated at the Marsden and I simply can't imagine she was not a private patient. She had such fast tracked treatment it's impossible she isn't private and in any case someone with her wealth would be extraordinarily unusual not to have private insurance considering the catastrophic state of the NHS.

Sadly, private healthcare is now necessary in the UK if you want treatment within a reasonable and safe timeframe, and anyone who can afford is going to get it, obviously.

It's the fact that she is misleading people by presenting it as though she was treated solely on the NHS. That is deceitful.

"I didn't like the if you get breast cancer don't be anxious at end like its nothing but think it was well meant. And I think the film showed it was difficult but does end."

Oh no, I agree, not that again, I don't like that either!!! I thought the be positive thing had finally gone out of fashion a few years ago (to be replaced by "don't eat sugar; eat kale/ lemons / garlic / or whatever the person thinks is the magic ingredient of the day).

"Don't be anxious" oh ok, so I think the person saying that needs to do 6 months chemo, a year of immune therapies, have a boob cut off, have all their lymph nodes removed on one side, get chemo brain, peripheral neuropathy, have whatever other side effects come along, weeks of radiotherapy, and then be told that the cancer may come back, there's an increased risk of leukaemia due to the treatments received etc etc. It is infuriating to hear we shouldn't be anxious when faced with stuff like we are faced with. It is NOT for them to decide what we are or aren't anxious about.

Plus it doesn't always end does it. For a lot of people it does, but for a lot of people it doesn't. they do say that secondary breast cancer is the forgotten, misunderstood disease where there is so much focus on survivorship.

End of my rant I need to stop thinking about this now!

@HauntedDishcloth

I understand why you do, but I personally don't think you need to feel guilty you got your treatment sooner. You got it in the correct timeframe; not your fault the NHS is collapsing.

Multiple European countries treat all their citizens (including people on low incomes) far faster than the NHS does. I know because I have lived in several of those countries.

Yes, it is unfair, but it's the system in the UK that is unfair, where the wealthier get healthcare within an appropriate timeframe while everyone on the NHS has to wait far too long; this is not your fault. A bit faster and a bit more luxurious is fair if someone if paying more, what I basically think is that the NHS is now truly substandard. Poor nurses etc and other staff so many of them doing their best but the situation is a disaster and national disgrace.

It is also why I am actually very angry that Sarah Beany is acting as though she was treated solely on the NHS which I cannot believe. It could have been a decision by the TV company and not her, who knows. She should just be transparent and honest.

lucysmam · 14/06/2023 20:29

Urgh, there is a BIG matt of hair right at the top of my head...brush or wide toothed comb or...I don't know 🤷‍♀️My dad's taking me for breakfast after nipping to the blood taking drive through in the morning so I can't just leave it to do its own thing 🙈