Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

@cannaecookrisotto to be precise not that it makes any difference thinking about it I seem to remember it was every three months at first then every six months…

I finished chemo on 12th and I’m getting out and about as I was very sensitive to cold during treatment. I’ve been walking more and enjoying it but my legs are really hurting has anyone had this?

@cannaecookrisotto sorry to hear about your friend, I think I agree with @Ventress and her post above, but it sounds like she cannot trust what they are saying which is worrying.
definitely a second opinion needed.

Hope everyone had a good day yesterday, I was happy to eat christmas dinner which I could taste!! and also had a small glass of prosecco. and some slight tears over christmas present unwrapping with my family.

Now gearing up for chemo 3 which is on Monday and I am terrified as each time has been a shitty adventure not to be repeated - however they are planning to give me docetaxel very slowly so I dont go into emergency mode again so it will be a long day.

Thank you to everyone for all the good advice and support here its amazing.

@Ventress hope you are feeling better than you were and have been able to enjoy your dinner.

Hi everyone did pet-scan this morning and Dr saw me after and said all looking tentatively good, looks like it’s just confined to breast so yippee !! that’s not bad at all .

@cannaecookrisotto I was thinking about your friend and wondering what the reasoning given about not going to the end of the EC treatment and then doing a new CT scan on lungs just in case it is only infection was?
@cantbelieveIamhere good luck with the chemo. Do you know how many you have you got to go ? I cried a little about a couple of xmas pressies too.
@littlebilliie I had awful pains in my legs after finishing taxol . Quite frightening tbh. I found lots of walking with good trainers, hot water bottles and vit D helped, but do ask the DR cos after much of my complaining they did check them with some sort of doppler ( it was all fine) They pain did wear off eventually.

Best wishes everyone xx

Post-Christmas wishes to all. @cannaecookrisotto I’m so sorry to hear about your friend. I agree with the others, well worth another opinion. @Ventress I hope breathing is easier and that the planned changes are helpful.

@Nonamelass cautiously optimistic for you.

The Ribocyclib experience is going ok so far here. I have found that I need a lining on my tum before having it - I was told it was no problem to have it with a cuppa first thing but then feel that my “food pipe” is sore. If I have it with breakfast (overnight oats) it seems to be ok. It’s a far cry from last year’s chemo experience - keep going, everyone!

Thank you@Nonamelass will check with GP

Evening All!
friend is getting second opinion for sure, especially as she’s on immunotherapy which can cause sarcoidosis - which mimics Mets on CT and often gets misdiagnosed. Her primary breast tumour has vanished so she wants confirmation either way.

How is everyone doing?

My hair is on its last legs, had to de-tangle it today and I’m down to about 50%. Think the clippers will be coming out shortly, I’m sick of finding hair everywhere. The only reason I’ve clung on for so long is because my eldest DD gets emotional whenever we have the hair discussion. She saw my mum combing it today and got upset with how much was coming away.

…

I have another cold 🤧. Sick of it now, just one illness after another. Baby fatfat has conjunctivitis in both eyes too and gets grumpy when I try and bathe them. So a 111 call tomorrow I think. Gah!

@cannaecookrisotto hi ! All’s well in noname household ( touch wood.. I feel like I always have to say that ..)
Very best wishes to your friend.
Sorry about your hair, most especially if it’s upsetting DD . Poor little chick. Have you bothered getting a wig? Would it help her if you wear one?
Sorry about the flipping cold and baby’s conjunctivitis .
Take heart @cannaecookrisotto you’re nearly half way through the EC and then I think it’s the op? You’re nearly there xxxx

Hi all. Hope it's been a successful Christmas in all your houses. Im sorry to those with colds, symptoms and difficult family dynamics. I've selfishly avoided my wider family completely

I had oncology appt in post yesterday to discuss radiotherapy. Not sure how long before it starts after that appointment. Any ideas for other ladies on same path? (NHS).

@cannaecookrisotto sorry to hear about your hair, isnt it worth carrying on though as the cold capping will help it grow back quicker so I have read?

also not great to have a cold, hope you get some time recovered before next chemo - when is that?

I have a couple of big patches that are very thin but want to carry on cold capping even if i lose more now that I have started and also hoping it will help it grow back quickly.

lots of people in the unit today getting blood tests ready for tomorrow.

back to chemo tomorrow its going to be a long day and another long session with the cold cap hat on.

sorry to see so many new people on here it makes me feel sad, whats going on that there is so much cancer around.

@ventress are you feeling any better?

Hello All, thank you all for thinking of me and your good wishes. It's been a busy one. The lymphangitis is substantially better, thanks. I am very relieved as previously the steroids had little impact on the lymphangitis. I am having difficulty sleeping and experiencing manic eating binges which are all steroid related.

DSIL came for four days which was lovely. She is such a sweetheart and just does her own thing, helps out and is no trouble at all. I still feel bad that DH is doing almost everything but I've been drawing up a to-do/new years resolution list which I'm definitely going to stick to

DS has split up with his girlfriend of 18 months. He's quite cut up and having trouble sleeping and concentrating. DH has made him a bacon sandwich and taken him out for some driving practice to try and get him focusing and thinking about something different.

I hope your DH is feeling a bit better and getting over Covid @TopOfTheCliff . How was your Christmas? I love that your chances of reaching 80 have increased so much - that's fantastic news, well done! I'm sure you will get back to feeling "normal" in time - even if that's a new normal.

Thank you for the Christmas Quiz @DanFmDorking - hope you had a good Christmas involving lots of roast meals!

I hope the chemo goes well today @cantbelieveIamhere - thinking of you

How did the radiotherapy talk go @FcukBreastCancer ? I haven't had experience of it to share I'm afraid.

I hope your cold is getting a bit better @cannaecookrisotto and that baby FatFat's conjunctivitis is getting better. That must be miserable for her and you. I agree with @cantbelieveIamhere - I would carry on with the cold cap if I were you with. If your hair is thinning and you need to detangle that much the clippers do make you feel better . I thought I would feel really bad after the clipper experience but the reduction in scalp sensitivity and not having the awful feeling of the hair coming out in the brush or shower is actually really good.

I hope your friend gets her second opinion. That does sound very distressing and I hope she can get everything that is happening to her straightened out in her head.

Sorting out my affairs is one of the things I have decided to prioritise next year. I'm not sure if I'm ready to hear how long I've got (as it were and if anyone knows) but I want to sort out my financial and legal affairs and make sure DS and DH are sorted out.

Apologies for all of the typos, my fingers and feet are still not responding as they should!

Good wishes to everyone on this thread - big hugs to you all

@ForestFlowerFairy - how are you doing? I hope the side effects have eased.

Hi @Ventress glad to hear you’re feeling better despite the sleepless nights. It’s sounds like you had a nice Xmas but sorry about DS bruised heart , hope that passes quickly for him.
Do you have anyone to help with housework and stuff ( apart from DH) ?
Getting financial affairs in place is always important no matter where we are in life isn’t it? We put it off but yeah none of us know what’s around the corner.
I agree about the clippers and hair , for me it just felt more comfortable regarding scalp sensitivity to get rid of it. It’s hard though because it really makes you feel like a cancer patient.
Sending you a big gentle hug and one for your DS and DH too
@FcukBreastCancer I can’t help on radio either as apart from not being under the NHS I did chemo first. I seem to remember radio started a couple of weeks after that finished.
@dancingwhilstfacingthemusic thanks ! Hope your chemo is going well and the day isn’t too long
Hugs to everyone on this thread

Thanks @Nonamelass. It’s just DH doing the chores at home at the moment which is on my list to deal with. I’m also going to work on doing more. Taking the time off work and trying to improve my health, both lung health and general walking and doing bits and pieces.

The whole financial and general affairs issues are one of the things that keep me awake at 3am (as well as the steroids 😂 ) DS should be off to university in the autumn and I’d like to help with fees and rent as much as possible.

I absolutely agree about the scalp sensitivity and the “cancer patient” feeling. I couldn’t believe the difference it made after I clippered my hair and that did negate the patient feeling as I just felt so much better.

It sounds like you had a lovely Christmas. I’m pleased the pet scan went well and there is no sign of any secondary cancer. That is fantastic news, you must be so happy. What treatment are they suggesting for you now as a result of the scan?

Glad you’re feeling better @Ventress, doesn’t help there’s all sorts of shite going around at the moment. Im coughing my bollocks off so make sure nobody has this crappy cold before entering fort Ventress, last thing you need would be this. At this moment I don’t even want chemo on Wednesday, I’m worried it will flatten me and I’ll end up back in hospital. I’m sure my bloods tomorrow will give the final verdict.

Putting affairs in order must be such a scary thought, it sucks that you’re having to consider it. I don’t know what these lot would do without me here working, I’m so stupid for not having some kind of life insurance. I know my outlook is ok with being stage 3 but the 3am thoughts are bastards aren’t they?

As for prognosis, I wouldn’t even ask the question if I were you ❤️. Nobody can truly say, you’re your own biological body and only your body knows how it’s going to respond to treatments etc. We’re our own little data centres aren’t we.

Do you have any specific plans for when you’re off work? Or some rest and relaxation?

I’ve decided that the moment I see a bald patch the clippers are coming out and the shaving will commence, like you say, I’m finding it more distressing finding my hair!!

@cantbelieveIamhere I will carry on cold capping as it’s supposed to protect hair follicles. I’ve done it for 13 rounds now so I feel I need to carry on out of principle :)! Next chemo is this Weds so we shall see what my bloods decide, although if I feel like this on Weds I might tell them to shove it for a week. Nurse is coming to do bloods tomorrow so I’ll see what she says.

Have you seen those heated poncho things you can get? Apparently very good for heating the core whilst cold capping, are you still doing cold hands and feet?

I’ve noticed cancer everywhere too but wondering if it’s because I’m more alert to it. Like when I was pregnant I saw pregnant women and babies everywhere.

@FcukBreastCancer
I imagine they’ll want to make sure you’re fully healed after surgery, I think my treatment letter path thingy says 6 weeks after surgery before starting rads, how long ago was your surgery now?

@Nonamelass
I’m going to pop into the wig shop at the Christie’s after chemo this Weds to see what’s on offer there and learn a bit more about wigs in general.

I’ll be halfway after Weds 😬, thank the lawd because my mojo is flagging, just want surgery now and to start feeling human again!

Waving to everyone else 👋 xxx

I dont actually dare feel too happy @Ventress I feel like I have to keep touching wood..
I’ll feel better ( the ´at first glance’ everything looks ok , occasionally pops up in my mind) when I get my treatment plan after the committee meeting on the 7th but I do feel really relieved touch wood. I had to refrain from kissing the radiologist 😅 I can deal with another BC that’s confined to boob 🤞 🤞 though I’d love to avoid chemo this time if I can tbf.
This cancer stuff though.. it just feels like I’m always looking over my shoulder sometimes … then again I realise how lucky I am.
@cannaecookrisotto yep roll on the end of chemo and the op. I know what you mean about wanting to feel human again. Hopefully you won’t have such a bad reaction this time .
@Ventress @cannaecookrisotto I feel the same about not asking about prognosis . I pussy footed around in 2002 with a ‘ can I feel hopeful?’ and their answer was ‘we are putting everything we can on your side’( translated from French) I had that blooming mark on my lungs that caused me much angst ( and scans) but even back then my gynecologist told me she’d had a patient with secondary BC to lungs for twenty years. I also know someone that’s been living a normal life in between three weekly injections since 2019 ( and long may that last) . So there are really no rules.

It’s blooming freezing here, I’m off work so have spent the afternoon watching Netflix and eatin chocolate snails 😊

@cannaecookrisotto definitely postpone if you are not up to it, the oncologist will probably say that anyway.
When I had my first shit session and was really ill for most of the three weeks I saw the oncologist on the tuesday before chemo due on friday and in my head I was saying just go and get on with it despite the fact I had barely recovered.
She said - no we will postpone and when she did I could have cried it was a big relief, so yes have the time to recover and go back in stronger.

Also @Poptart I would say the same, best to defer if you need to recover. It is annoying but sometimes things just go that way and work out for the best as I ended up being able to taste christmas dinner which would have been unlikely if I had continued on my original chemo dates.

@Ventress thank you for thinking of me, good you are feeling a bit better.
I am not asking those questions either, as @cannaecookrisotto says everyone is different and best to take everything one day at a time. Even people without cancer dont know whats around the corner.
But lovely to hear @Nonamelass good news and also tales of survival which are always good to hear.

Nurses were kind to me, chemo was given slowly and more meds to alleviate any issues and all went well but a long day. Cold capping continued with a strange cotton elasticated cap and I did it for three hours today!
But the cold mitts had to be thrown off as I was getting far too cold, although I managed longer with my feet in icepacks which is weird because I hate having cold feet.
I thought of @cannaecookrisotto when I ditched them.

So steroid high for a couple of days.

sorry if i have missed vital stuff I am knackered have been up since 5am from nerves about today.
Did notice Bon Jovi Halfway there reference - wish I had thought of that

Read all your comments. My heart goes out to all and I love every positive moment you share. I’m just back from chemo idk what # but mildly nauseous. Granyx starts Wednesday. Saw my oncologist and PET scan pending within the next few weeks. It’s the waiting for results and hoping the hammer doesn’t fall. I finally asked what’s the next step if the taxol stops working. She said there’s one more targeted therapy (I might have posted this before). Then that’s about it 😪🤷🏻‍♀️. I’m not giving up but hope I use my common sense. @Nonamelass I,too, avoided asking about prognosis right from the start. I’m starting year 3 of tx. I wish with all my heart I had been given a phone call about the need for an egd two years earlier when I was more likely to be cured.

@Sbmpp I’m so sorry that you didn’t get that phone call. I hope taxol will continue working for ages , then you still have the next therapy that’s possible and there’s a chance that new therapies may be available after that , things are objectively moving very fast in cancer treatments. Sending you very warm wishes across the Atlantic ( I think its the Atlantic between europe and the usa? I’m so rubbish at geography 🤦🏻‍♀️) xxxx

@Nonamelass 😝. Yes it’s the Atlantic. Geography wasn’t my best subject either however I’ve watched endless fabulous WW2 miniseries from the UK and boy did they help.
My oncologist has told me that there’s so many new things coming around she can hardly keep up. So I am somewhat hopeful. Thank you for the kind post.

@Ventress Thank you - I hope you all enjoy the Christmas Puzzle Good Luck with it - please let me know how you get on

I wish you all a very happy, healthy and improving New Year - Dan.

How was the blood test today @cannaecookrisotto? If you aren’t feeling up to chemo tomorrow you should definitely say. There’s no point in going ahead and getting sicker. Thinking of you.

I went out to lunch with a friend today. It was really nice. I stuck my poorly foot into a boot for the first time in two weeks 😂 Luckily there were only a few people in the pub and they were over 70’s so fingers crossed, no colds floating around!

I agree with you all about asking about prognosis. I could get hit by a bus tomorrow. I’m just a bit of a control freak. I plan to catch up with friends, I am going to sort things like my will and LPAs for DH and DS, just in case. I also really want to get outside and walk around. I’ve just been so tired after work (and it’s dark!) that I haven’t had the energy.

I spoke to the chemo ward today and they have rescheduled my zoledronic acid from Friday until Tuesday after my oncology appointment. Apparently this means that the ribocyclib can be ordered to the chemo ward and I won’t have to spend an hour waiting in the pharmacy, which sounds good to me! They are so kind. I have nothing but praise for the team ❤️

I hope you don’t find more hair @cannaecookrisotto, although the clippers can be rather emancipating, particularly if your scalp is very sensitive. I am finding the ability to just “wash and go “ very freeing 😊

Half way through is a massive milestone but don’t rush it - it will happen but it doesn’t have to be when you are feeling really poorly.

I think you can feel happy about the diagnosis @Nonamelass. You need to take whatever small wins you can get on this journey! I hope the meeting goes well (it will, I am only being positive these days 🤞) I’m also taking a lot of strength from your knowing someone with secondary bc in the lungs. I know my lymphangitis is not the same but it sort of is (being positive again).

Are you watching anything good on Netflix? I need a box set!

How are you feeling post chemo now @cantbelieveIamhere? Three hours cold capping sounds absolutely awful! You cold capping ladies are simply amazing. No way would I have the ability to do it.

Urgh steroids - they really are horrid. I’ve found that I sleep every other night but it’s a strange, fitful not sleeping and not awake type of state. I feel quite zombie like during the day. How much longer will you have to take them?

How are you feeling now post chemo @Sbmpp? Granyx starting on Wednesday (yay!) Hopefully the taxol isn’t going to stop working. It’s such a well used, and well received chemo drug. I was with ladies when I was an inpatient who had used it for decades on and off. Other therapies are improving day to day too. As @Nonamelasssays there will be another option should you need one as it moves so fast ❤️

Will do @DanFmDorking- I am home tomorrow and plan to delve into your puzzle. Take care, be well.

@Ventress oh goodness yesterday I watched speak no evil😱 It said it was a thriller… I mean it was hair raisingly good but 😳 the facial expressions were a bit comical at times but blimey !!! I got engrossed in it and I don’t usually like violent stuff ( especially with kids involved.) anyway spoiler alert it ends ok (sort of.)

Yeah I’ll take the win 😊😊 me and DH ( who were squabbling like toddlers with the tension of it on the way there) were elated !!
I unfortunately decided to look at my biopsy results this morning stupidly ( I can log in and look) that KI thing looks a bit high to me and chat gpt , and it’s progesterone negative (but highly estrogen positive ) so I’m not so sure I won’t be a candidate for chemo again… I should have just done what i usually do and remain in blissful ( ish) ignorance. Hey ho what will be will be I suppose.
Am also thinking about what I want op wise if that’s what I’m having . I’m deciding now before I see the surgeon so there’s no delay in operating while I think about it . I think I don’t want an immediate reconstruction. It just seems such a big op all in one go especially if I have the double mastectomy.i think I might just go flat and get padded bras … I dunno ?

@Ventress you are absolutely right to stay positive , it’s not just empty words that cancer treatments are coming on in leaps and bounds, loads of people are living with it as a chronic illness these days.
I’m like you I find comfort in knowing things are sorted out financially and legally ( aka control freak too)!I’m thinking of doing a file with all necessary information paperwork and passwords in it . When we first went off on holiday without the kids I actually left a list of what to do and who to ask in an envelope in a drawer for them in case we didn’t come back 😂

@cantbelieveIamhere ( I can’t believe I´m here ( again) either) hope yoûre not feeling too rough today and what a warrior you are with all the cold stuff!! No wonder the mitts got thrown off!!!
@Sbmpp phew it is the Atlantic!! Hope you’re feeling ok today
@cannaecookrisotto hope you’re feeling better and baby too.
And yes steroids… the joy …I was like a hyperactive bunny bouncing around with no sleep and then crash landed in a heap on the sofa with our boy ( dog) patiently lying next to me💕
Sending best wishes to everyone and @DanFmDorking I’ll have a go at the puzzle too 😉

Thanks to all for the support ♥️. Yesterday was a chemo day. Today nauseous. Also I always get red, warm cherry pink cheeks the day after chemo (lasts 2-3 days) and they’re painful!! Plus nosebleeds and sneezing. I haven’t heard from pet scan, Which is ok because no news is good news. Last weekend (tmi) I was feeling lousy and ended up with n/v/d. The vomiting concerned me because there was blood in it (light pink. Not the color that comes about from damage to esophagus from excessive vomiting. So, I’m hoping, praying it won’t have grown. Adenocarcinomas are so difficult to fight. I am just loving all of you and I’m hoping the New Year will see progress and cures and that you all will have strength to fight and win. (Sorry once again for rambling).

Hi all, well it's coming up to 3am and I'm awake with all the stupid 'what if' thoughts
This last week hasn't been great. Christmas was interesting! Son did come home but my word the house was tense until he went home again. We had friends round over the Christmas period and I absolutely over did it on activities to try and lighten the house and mood. Unfortunately it means I've really been struggling with energy levels and discomfort - my neck and throat are so sore, I'm eating but continuing to lose weight and whilst logically I know it's normal to have ups and down, and that it's likely because we've been so busy but inside my brain is screaming the treatment didn't work.

Everything I've read says scanning too early can lead to shadows and over treatments so them delaying to 14-16 weeks after is totally normal and paying to go private may cause more anxiety than it actually solves.

I'm going to spend the next couple of days forcing myself to rest so I can more easily see if my 'symptoms' are me overdoing it or if I am genuinely starting to go backwards again.

I agree with everyone saying don't ask for a prognosis, years ago my Grandad was given 18 months. None of us knew this, until he took us all out for a meal to celebrate the start of his extra time and beating the 18 months - it had clearly weighed so heavily on him and we had him for about 3 years after that.

@Ventress I do have a file started to get everything in order and I eased myself in. I started with a household one - which I could justify as 'if we sell the house' as well as 'if the worst happens ' it's broken down by room, with window certificates, floor choices and paint colour and brand as well as manuals or warranties for items in each room.
Then I have a household bill folder - our supplies, payment details, log in details. These ones calmed me and absolutely helped with some of the late night worries.
Next up is the bigger stuff like my life insurance, pensions etc I also still need my will sorting and honestly that's the bit I'm dreading the most as there's a difference between what happens now V what would happen if much older. Things like ensuring my half of our assets go to the kids and protected if my husband remarried, I don't think I'm ready to write that yet.

Is everyone creating their new years resolutions?
I saw a meme the other day reminding everyone they don't need to be positive - it's absolutely acceptable to have one that says 'be angry, loose your temper more' and I kinda liked the idea. Why has it always got to be about self improvement?!
I'm going to try more to 'do the thing' so often I see little courses or experiences and don't book them because I don't want to go alone or leave it too late and they are sold out. No more! If I see something and I want to try it, I'm going to book it. I'm keeping an eye on our local pottery place and a few artists who run introduction to painting courses as well as seeking out some more cooking classes.

@ForestFlowerFairy sorry to hear you are struggling, its hard to see progress sometimes and I think we all end up with the same thoughts of has it worked, am I getting worse.

We did our wills via Martin lewis website recommendation - a free will website and it was pretty straightforward - and free although they send you a few emails suggesting you get it bound and would you like other things. Anyway its an idea.

I hope some rest will help with your throat and eating, its scary when you cant get the nutrition you need to help you recover.

best wishes to you - me up early with the steroids