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Cancer Support Thread 83 - Here comes the sun (hopefully)

1000 replies

Silkierabbit · 07/06/2022 20:42

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

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AGreatUsername · 22/07/2022 13:26

@Acinonyx2 thats exactly it, you’ve summed up what I’m feeling. That it’s hard to plan to live and die at the same time. From the CR website my 5 year odds are about 50/50 too. But that includes all ages and high grade OC too so I have no clue if my odds are actually better or worse than that really. I got a great job just 8 weeks before diagnosis, I haven’t even really started doing the job before going off sick and now I’m wondering if I can cope with that level of responsibility again after I finish treatment, I’m doubting my own ability to be the strong feisty woman I was just a few months ago.

@Tryhardermum I am sorry that man was a dick to you, some people are just not worth wasting your time thinking about. I’ve just submitted the ESA form today, I put no to am I getting SSP because I’m not, but I am midway through 4 months paid leave and now I’m panicking I’ve put the wrong answer and will be sent to prison.

Now. A chemo question. I’m due to start 6 rounds of 3 weekly carbo/taxol soon. Has anyone had this? How did you find it? Has anyone used (and had success with) the cold cap? I’m having my long hair cut into a short Bob next week as a stepping stone but I’m sick with dread and fear about chemo.

Silkierabbit · 22/07/2022 14:56

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Silkierabbit · 22/07/2022 14:56

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Silkierabbit · 22/07/2022 14:56

Great I am sure it will be fine with your answer but maybe ask employer if you are getting SSP atm, my guess would be yes via employer and its part of your sick pay but check with them. Then if it is yes maybe call the ESA number to change your answer and sure it will be fine. I am sure lots of people will get that one wrong and no way would you end up in jail even if you don't do that. Surely they must know as well.

I did 12 weekly Paclitaxel but no carbo, I was not allowed to cold cap as weekly and not enough staff but did my own version of frozen peas on my head each week under a tight fitting chemo hat. Nurses thought I had lost the plot initially but then they became fascinated by it as I kept a fair amount of my hair. I am 3 weeks post and have a short bob of hair about an inch past my ears about 70% of normal thickness. I cut it from my long hair about 6 weeks in and at its worst went to about 50%, I lost it from the sides and back where the peas did not cover but the hair from the top also went down so had the top 50% of my hair. So I would say cold cap is well worth trying. I hated my hair at 50% but now am so glad I did not listen to advice to cut it all off as in past 3 weeks has already gone to more like 70% and now just need to grow it maybe 4 more inches to get it back to more like how it was before.

I also find it hard planning for death and life and can't quite get my head around it. I am very much a person who likes to plan and it throws me. Though as DD put it you are either dead so that's fine as you won't know anything or your alive which is fine too. They aren't really fine with cancer but you do come through the blind terror part and as time has gone on I've got a lot more like whatever will be will be, I can't change it other than do the treatment, then I have done all I can, and stressing about it is just ruining the life I have left so you reach a point where you become calmer. I do try and do what you really want now though trouble is with cancer plus covid rules that is not always possible. But with things like the cat I got the kitten I always wanted. I also feel I got to 48 cancer free (well not cancer free but without knowing) and if had been born 100 years ago or earlier that would have been normal life expectancy. Plus I travelled a lot, had kids, went to university, did almost every job I really wanted to do, husband, lovely pets and I feel I lived a very good life in those years so I am as at peace with me dying for me as I can be though still want to live. There is very little I really wanted to do I haven't. Its my son I worry for not me if I die. He is SN and very dependent and its a shambles with his education even though he is super bright and gentle. My daughter is very capable and successful, lots of friends and though only 16 I feel she would be OK. It did take me a while to reach that point, maybe at some point during chemo, so after the initial tests, surgery and surgery results. My maximum terror I would say was just before chemo and at surgery results. So hopefully Try you will reach that point before too long. I think once you have all the results and all the treatment plan you know what you are facing. That point kind of peaked my terror then after that I began to adapt to it and realise that I had to do the treatment then accept I had no control over when I died. But its a weird change. Doing a few nice things helps.

Max depression was in chemo but that was steroids with it and the complete shambles of DSs education at same time plus DD GCSEs at same time. Mainly DSs. And zero mental health support from NHS though Macmillan offered 6 sessions which helped. Having a 24/7 line helped. And only 5% of people react like me to steroids. The physical effects of Pax chemo the main bad one I had was neuropathy which was very bad at the start, losing balance and lost feeling in legs and gums as well as tingling hands and feet and then it improved with weeks off and going down to 90% from cycle 4. Now its over I just have neuropathy in hands and feet and appearance trashed but a month on that is improving. I hope neuropathy will go, it comes and goes apart from one thumb which I have been told is a sign it will go. My energy levels dipped in chemo a lot as well, though a can't sleep on steroids day 1 to 3 then very sleepy rest of week is more accurate but around 2 to 3 weeks after came back, just before radio hits again. Sickness very little on Pax and there are so many meds for that and they put you on loads. I have a sickness phobia but actually had so little sickness I reduced the meds It is worth keeping a weekly diary as cycles tend to be similar and call 24/7 line any issues as there is lots they can help with. Other than neuropathy its very rare to get a bad reaction with Pax that is why I chose Pax. And if you take your temp with a digital thermometer twice a day or if feel ill and report if over 38C to the chemo line asap they told me there is virtually no chance of getting sepsis.

I have not had lymphoedema, I was told exercise was key to prevent it and key if got it by the nurses, when I looked online it was swimming arm type movements.

Love to everyone. I start radio on 4th and then after may have reconstruction but 1 to 2 year wait for that. Oh and those lovely hormone tablets. I certainly was very depressed and incredibly anxious with it at times, esp anxiety would say, it was very much keep screaming and carry on with me at times but now chemo is finished I am a lot more meh about it. I think people vary in when depression / anxiety hits and stops. Now I feel worst of treatment is over and I am also used to scans etc so I go in and like its just another one. Chemo anxiety is worst first cycle as you don't know what to expect. I got through first one telling myself could stop if it was that bad which you can. Each cycle was similar apart from the adjustments. So anxiety does reduce then as there is more certainty. For me chemo was like the equivalent of mild flu for 3 to 4 months, not great but doable and it was the mental health side I struggled with but that was largely 3 big things at once and also no mental health support. And it made me ramble and grumpy with things. But there were good times like walking on Farne Island, May Bumps party in Cambridge, boat trip seeing puffins in Wales, getting a Maine Coon kitten in chemo, there will be good days inbetween the rubbish ones and once done you know you have thrown everything at the cancer. I also only had a 6% chance of a benefit from it but ask them what that benefit is Great for me it was defined as being alive in 10 years so that's quite a benefit when you have kids. I was terrified and screaming at the idea of chemo but did it so I did all I could to help chances of it not reoccuring. It is frustrating not knowing if its a waste of time but that is the state of knowledge atm and you have to work with that and do what think best at time.

Oh and ESA I was also told to attend in person. I refused saying risk of covid was too great, I also had a few difficult people with ESA, but they did it over phone and after a few months when sorted I just get paid it for another year and a half or so and no more sick notes, no calls until Oct 23. You just have to get through the unhelpful bit, really rubbish you have to deal with that Try

OP posts:
Silkierabbit · 22/07/2022 14:58

Argh it told me it was not posting and then posted it 4 times, sorry everyone.

OP posts:
Silkierabbit · 22/07/2022 15:16

Great I would see how you feel once chemo is over about the job. Also I think cancer can change things well like when life expectancy is likely to be shorter it can change what you want to do with that time. I don't know if doing it part time would be an option but think about it once you have more knowledge of what chemo will be like. Just take your time and keep your options open if you can whilst you decide. It varies a lot from people who stop work to people who go back full-time in full on jobs but as time goes on you will have a much stronger feeling what you want.

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HerbalRefreshment · 22/07/2022 16:47

I got to a mental place where I decided I didn't want to live my life worrying about time based on some crappy statistical curve. I know the odds/expectancy for my situation, and I also know that I have been hanging way out on the far end of the statistical curve at every point (BRCA status, stage at diagnosis, age at diagnosis, hormone status). Cancer has no rhyme or reason - in the past three years Ive seen people die fast who had a favourable Stage IV diagnosis and Ive seen people resurrect from almost death when a last ditch treatment line worked effectively. At some point you throw up your hands and say screw it, I did/am doing my best, we all die in the end, when the time comes, it comes whether I want it to or not. I guess I finally achieved Acceptance.

All I want is to feel comfortable when Im on the downward slope that I lived life with this crap on my terms. I refuse to give cancer any more power or control over my life right now than the token monthly visit, bloods, and expensive pills I toss down my throat twice a day. That much I CAN control.

mowly77 · 22/07/2022 19:55

@AGreatUsername haven't been thru whole thread but apply for PIP right now —they backdate it from the day you make your claim — the day you call up to ask for the form. Macmillan charity can advise you how to fill in the (paper) form they will send, or Maggies will or your BCN at hospital. It looks massive and daunting but it’s actually fine — I did mine myself.

The backlog is 4-6 months on processing it & a decision being taken!! Unless it’s considered you have less than 6 months to live. Sorry that’s so stark but they will ask you & I just said no as I’m getting treatment, as you will be, & I bloody hope not.

So that’s why do it asap. It’s not means-tested, so it’s great, if you feel well enough to work at your new job you can and I hope they’ve been sympathetic and perhaps could you do some sort of reduced hours/days?

Basically like @silkie I am on ESA too but hoping to come off it and work a few days a week as with ESA you can only work 16 hours a week & earn £162 max. So PIP is better. I finally got awarded it at top whack this week and a big back payment from when I applied in March. So that was my real win and good news for the week.

At first, I didn’t feel like I ‘deserved’ these benefits which is ridiculous seeing as I was rushed to A&E twice for lengthy stays in April & so sick in the beginning. & both me and partner self-employed, ain’t no sick pay & we can’t survive on just partner’s job. You absolutely are entitled to these benefits.

PIP - they point score you for categories for how hard it is now for you to do things by yourself. Didn’t realise but a huge component is mental health. DM me & I can help if you want and explain their point scoring? You should describe your WORST day not play down anything or feel you’ve got to be brave. Be honest but it’s about you at your WORST on a BAD day. Citizens Advice website has a little explainer too.

So it’s literally everything. I have a picc line in for example, so cooking & cleaning & caring for my daughter difficult as you can’t lift heavy things or stretch that arm high, low or fully out at all. I have also lost confidence in social situations and need to be with a trusted friend or family or DP if I go out socially (rarely), and that counts, for example.

After finally processing your form the DWP outsources decision to a third party firm who will make telephone appointment with you. It took two bloody hours & was hard emotionally because it was explaining in detail how diminished I was mentally & physically now but the guy was so nice and clearly wanted to help me. He was working from home & his small child was sick & kept interrupting him. My daughter same age so we bonded & he was lovely. He even advised I make sure I talk to Macmillan BCN or another sympathetic ear after the call as it can be a lot mentally & upsetting to explain everything again.

Here endeth my PIP lecture.

mowly77 · 22/07/2022 20:43

@AGreatUsername I’m also on pax (but not the other one you mentioned). Totally doable. When my oncologist told me I cried & cried (I was supposed to start on tablet form of treatment which is gentler & no hair loss but ended up in A&E twice before that could happen & diagnosed with incredibly rare auto-immune blood disease too yay! So she changed it as IV chemo gets to work faster.) I had intense IV chemo 11 years ago & thought it would be like that but it’s not. I’ve done 8 pax cycles at a reduced rate of 75% , and now 2 at 60% , and my tumours have shrunk by 20-30%. I want to be switched to Abraxane (similar but possibly less side effects) or at least go back to 75% but it’s hard convincing my oncologist it’s ME who needs to involved in these decisions! I’m ready to do three more months of it & be scanned again before we decide what’s next.

pax - you will be tired but that’s normal. I have chemo on a Friday and I’m wiped out from the piriton they give you before it but I feel fine in myself Saturday and Sunday. Then on the Monday I get nausea and diarrhoea like never before! Normally only lasts 2-3 days so can handle it. I rest in bed just accept it when I’m sick & the rest of the time I feel not so bad at all like @Silkierabbit said. Imodium and electrolytes are my pals. There are loads of anti nausea meds so try them all & see if you find one that works for you. I didn’t but I’m taking CBD and THC too & it takes edge off. Eating little & often & fresh air & gently walk even ten mins on my most nauseous days helps a lot. My onc was very reassuring and said most women cope well on pax. The steroids for day 2 and 3 are for nausea too but I have never taken them as don’t like the way they make me feel. And my nausea doesn’t come on those days anyway!! Keep talking to nurses and don’t think you have to take the drugs etc if they don’t work for you.

The medics wil be most worried about neuropathy with pax as if it gets really bad it could be permanent. @Silkierabbit knows a lot about this as she said in her post! Mines been ok so far, now getting more pins and needles if I stay still too long but so far so good — they will keep asking you about that relentlessly so be prepared.

Good luck. I know chemo seems incredibly awful & daunting but once you start, the mystery & fear will go & it will become a new normal really. I take a book, & headphones and phone etc, so I can listen to The Archers or relaxing music if I want to block the process out. Sometimes I do admin like making boring phone calls or replying to emails. Sometimes I just sleep! But with earplugs, as everything beeps, it’s busy etc. Take snacks & drinks but hospital will also provide them. Quality & variety will vary as an enlightening discussion on one of these threads proved !

oh and all my hair hasn’t gone yet, very mysteriously, even on a reduced dose I keep asking if that’s why & they’re like no … we don’t know why! But it’s so thin and I’m balding badly now so I wear scarves to cover the worst of it or in the heat a huge straw floppy hat which looks glam with sunglasses. I have lots of hats & turbans lined up for when it all does go & when I’m feeling up to it a jazzy scarf and some bright red lipstick does wonders for self confidence. Your hospital can also put you in touch with a wig maker and Macmillan will pay for it if you fancy that.

I’m sorry you’re having such a rough time so sending love and a hand hold.

mowly77 · 22/07/2022 20:46

Love those sentiments @HerbalRefreshment That’s so well articulated. Feel the same. cancer is so uncontrollable. I’m BRCA as well so had me blinkin’ ovaries out in 2019 & that bastard STILL came back. I haven’t achieved full acceptance like you but I’m learning to control the controllable and say ‘screw it’ to every other fucking bump in the road.

mowly77 · 22/07/2022 20:50

@Tryhardermum I’m on small dose sertraline (half a 50 pill a day) & it’s helping keep me more even. I mean nothing can help me forget the cancer terror but helps you get on with each day as it comes. You can also insist firmly yet politely the hospital give you an anti anxiety med when you’re there if you’re really panicky. I think they give lorazepam. My GP is lovely and I now have a prescription for diazepam for my panic attacks etc.

mowly77 · 22/07/2022 20:53

@Confusedasnormal love good news! That’s great!

This thread will take it all — the good the bad and the ugly. Right Love Island time so no more walls of text from me you’ll all be relived to hear. Love to everyone I haven’t mentioned. We have all made it through another week. We rock.

SierraSapphire · 23/07/2022 11:30

I am back here after posting briefly a couple of months ago. I was originally diagnosed with stage 1a grade 1 endometrial cancer and had expected the treatment to be just a hysterectomy, then when the histology came back they found a patch on my ovary so I was upgraded to a stage 3A, I asked lots of questions about the treatment they were recommending as my reading indicated that it probably wasn't necessary in my situation (I am also a difficult patient @Silkierabbit though the last consultant said it was nice to have a proper discussion with a patient) as the guidelines had recently changed but that didn't seem to have filtered down to my hospital. When I got a second opinion they agreed with me that I didn't need more treatment on the endometrial cancer, but they also reviewed the slides and found that I had a small patch of stage 1a ovarian cancer that my hospital had missed, and are suggesting a test for BRCA. At each stage there just seems to be worse news. I'm now most worried about BRCA and my daughter though rather than myself.

I am just about to start carboplatin and paclitaxel too @AGreatUsername - I'm planning on fasting around the treatment to try to protect my healthy cells. If anyone has specific suggestions for lovely headwear that would be great. I've got an appointment with the wig clinic next week but most women I've spoken to seem to say that they find them uncomfortable.

HumphreysCorner · 23/07/2022 11:36

@SierraSapphire hi again. Just to say I couldn't bear wearing my wig and it was an expensive half human hair one my BIL sorted. I used scarves at first then when the weather got warmer I didn't wear anything.

Just working on my final assessment of my Autism course due in on Monday. The pressure is on.

Big wave 👋

HC x

HauntedDishcloth · 23/07/2022 13:43

@SierraSapphire Like Humphrey'sCorner, I didn't get on with wearing a wig. I did like wearing a hat with hair attached - you can get various styles but my best one was a cheapy baseball cap one from ebay. Or you can get a halo wig which is a circle of hair that you can fit under your own hats. I occasionally wore a clip in fringe or clip in side bits of hair under a headscarf. When it was cooler weather I found a slouchy beanie was good as it looks like you've bundled up your hair inside. I did experiment with scarves & there are loads of online videos so there are a few options out there once you start looking around.

Runningwithoutstopping · 23/07/2022 14:40

@AGreatUsername I had paclitaxel/carboplatin . I found the first week after treatment was the worse for side effects My worse side effects were lack of energy, aching limbs and constipation(some people go the other way). By week 2, I was beginning to feel better and by week 3 I would feel 'normal'. I found that there was a routine and once I had 2 treatments I knew what to expect and I could plan around my side effects. I didn't experience any sickness although I didn't take any chances and took the anti emetics as perscribed.
I choose not to cold cap it was quite a long treatment time (about 5 hours) and I didn't think I could deal with it for that length of time . We're all different though, that was what worked for me your decision may be different.
My big tip for chemo days is take plenty of books/music/audio books/films and headphones I also took snacks (we weren't offered snacks or drinks this may of been a covid thing) Wear elasticated trousers or something easy to yank down one handed if you need the loo x

Runningwithoutstopping · 23/07/2022 14:44

Anna bandana and Simply wigs(not just wigs) do good headwear

SierraSapphire · 23/07/2022 15:04

Thanks for those recommendations, Anna Bandana looks good. I told my daughter I was going to get a bright blue bob for a wig so she's decided to come with me so I don't end up embarrassing her. I'm just going to start with the standard one through Macmillan to see how I get on. A friend spent £500 on a human hair wig and only wore it twice!

Silkierabbit · 23/07/2022 15:33

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NanaNelly · 23/07/2022 15:51

HumphreysCorner · 23/07/2022 11:36

@SierraSapphire hi again. Just to say I couldn't bear wearing my wig and it was an expensive half human hair one my BIL sorted. I used scarves at first then when the weather got warmer I didn't wear anything.

Just working on my final assessment of my Autism course due in on Monday. The pressure is on.

Big wave 👋

HC x

What course is that Humphrey.

my son is 31 and on the spectrum (amongst other things) He was diagnosed with Classic Kanners Autism which is a diagnosis I much prefer to everything else that has come along these last 30 years

NanaNelly · 23/07/2022 15:55

Lots of love to you too Silkie.

I’m loving your frozen peas and it’s just reminds me of my husband who had a bit of a strain somewhere and found in the freezer a nice little ice pack ‘thing’ that was just perfect for what he needed. To this day he doesn’t know it was a frozen kind of panty liner that one of my girls used when they had an episiotomy.

we still laugh about it. On our own. Like witches.

NanaNelly · 23/07/2022 15:56

@Sierra, is the OC a secondary cancer or a separate cancer altogether.

SierraSapphire · 23/07/2022 16:06

NanaNelly the OC is separate from the EC, though I also had a "small deposit" of EC in my ovary, so stage 3A EC and stage 1A OC. Good job I had the EC really as otherwise the OC wouldn't have been found at such an early stage.

AGreatUsername · 23/07/2022 18:03

Thank you so much for all the detailed replies regarding chemo. Really useful. I am trying to tell myself it’s just 4 awful months and then we move on.

@SierraSapphire we can be chemo buddies. When do you start yours? I’m not sure on mine yet, they were supposed to call last week but I didn’t hear anything other than a letter for a CT scan which may or may not be before treatment starts. Can I ask why the fasting? I have no idea what I’m doing here.

SierraSapphire · 23/07/2022 18:26

Mine starts next Wednesday @AGreatUsername - I'm not sure whether I'm having four or six rounds at the moment - do you know what you're having?

The idea about fasting is that it shuts down some of your healthy cells which are protecting themselves because they don't have enough fuel whilst at the same time making any cancer cells more active as they're looking for food, so minimising side effects on healthy cells and maximising the effect of the chemo on the cancer cells. I've been told fast two days beforehand, on the day of chemo, and half a day afterwards. Here's an article about the benefits of fasting. It's not supported by the mainstream NHS at the moment, so not commonplace though they are involved in research on it, but there is plenty of evidence for its effectiveness www.medicalnewstoday.com/articles/324169

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