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 so glad that you’re home for the play and to be able to watch the star of the show💕 Hope you’re feeling a bit better.

@cannaecookrisottoso pleased that you’re back home with your family.
@FcukBreastCancers7ch good news that they got clear margins and that you don’t need chemo.
I hope everyone is coping with their treatment.
Still feeling tired after the radiotherapy and whenever I get hot (quite often especially at night) may boob scar feels irritated. Also I went to the hygienist and wow is was excruciating painful when she was cleaning my bottom front teeth, much more than usual. It was like she was drilling into my nerves.. Could it be down to the letrozole? I’m sure it’s not the first time I’ve seen this hygienist. I nearly jumped out of the chair.

Happy Friday all. Hoping you are feeling good in the run up to Christmas. Looks like some of us have had good news esp @FcukBreastCancer so pleased for you.
Glad you are home @cannaecookrisotto I bet that was a moment and a half. Put a lump in my throat to read it!
@Ventress sending you cold kicking vibes, really hope you are feeling better for Christmas.
@Sbmpp your frequent a&e long waits sound crazy making! So glad you don’t have DVT. There is a history of this in my family so I’m going to be careful to keep an eye out for it when treatment starts.

I’ve had a lovely day with my kids and dd’s fabulous boyfriend. Tree finally up and we had a baked ham tonight by the fire with Home Alone all snuggled up on the sofa together. Almost felt like Christmas day!

I’m now sitting here trying to figure out what to do when chemo starts. I run a hospitality business with my BF and am employed by him. Been advised by consultant that it won’t be a good idea to work once I’m on chemo due to the extremely high risk of picking something up from the large amount of people I’d have contact with.
I live alone, have my son 50/50 with ex so no CM, and am already on UC as I don’t earn loads. The business really cant afford to keep me on full pay for sick leave as we’re already really struggling in this climate to keep it going. Does anyone have experience of what financial help is available out there for those of us in this sort of situation?
BF has said he will help me out but I am really, really loathe to accept this if I can stay independent. I left a 20 year marriage 5 years ago and have fought hard to stand back on my own two feet financially after years of being a sahm and stupidly trusting I’d be ok in divorce.
I just don’t want to rely on any man to be ok again. Maybe I’m silly for being like this…I trust BF and he's wonderful and won’t see me starve. But I feel like its too big a cost to lose my ability to support myself just as I’m finally able to be self sufficient.

That was long winded, but basically I’m asking if anyone on here has been on UC before and during treatment and what else might be out there. Ive used entitledto. And Macmillan to figure out what I might be able to source, but both are giving me figures I know won’t be enough to keep my home going alone and the way their questionnaires are worded means I’m not sure how accurate they are.

@Nonamelass Me too on the worrying about my kids. They’ve already been through so much with the divorce and both parents being with new partners, and they are truly the most amazing human beings despite it all. I hate landing cancer at their lap. X

@Inthebasement I’m so sorry to read your financial worries on top of everything else and really don’t have any experience or advice as I live in France but just wondering on the off chance if you have ever lived or live in Merseyside ? If so there’s the Liverpool Merchant’s Guild ( you don’t have to be a merchant 😉) that might be worth a look at .

Thanks @Nonamelass. Unfortunately not, but thank you for the reply. 😘

@Ventress hope you’re feeling better !
and hi to everyone else!

I got my petscan date so will get that done. Though I did get a bit tearful when they phoned me. I just wish I could just have the op and not have to do that first but I know it’s not logical. It just petrifies me ( well the results do) I shall now force myself to forget it until I get the treatment plan after the 7th.

Everybody has been so kind and quietly supportive at work. I haven’t actually told them all ,just a few but haven’t said it’s a secret either and they can all see that I’ ve not been myself . I’ve had a couple of presents and supportive notes discreetly left on my desk, offers of help with any work ‘ I haven’t got time for,’ a little pat on arm( in a nice way) , someone jumping up to go and get me a chair when all the chairs were taken and I’d usually just go and get one myself, they really are all so quietly lovely ( and I have to steel myself not to actually cry because they are so sweet) my boss is a supportive angel. and I am so terribly fortunate to work somewhere that I actually want to go to to keep my mind off things.

Ach it was a long shot. I don’t suppose there’s anything similar where you are? It’s sod’s law that you should have done so well getting yourself on your feet after your divorce for this to happen. I hope someone else will have some advice xxx

I mostly lurk here rather than post, but I had my last chemo yesterday.

I work from home and have been well enough to work through chemo apart from the first 5 days after treatment, although I appreciate that it’s not the same for everyone.

It sounds like the issue is being face-to-face in hospitality rather than working itself. I’m wondering whether you could spend the time focusing on making the business more profitable. And be paid for your hours?

So, things like advertising and marketing, financial planning, 3-year strategy, looking at productivity, market research, taking bookings, upselling to existing bookings, contacting prior guests to encourage returns, supporting with sorting specific requests, arranging specific events on quiet dates etc.

I work in this area and lots of hospitality business owners spend a lot of time firefighting and not much time leading, so although unplanned, this could be really positive for your boyfriend’s business to have someone focusing on this stuff if the business is struggling.

@Nonamelass Going to keep everything crossed for good pet scan results. Love, hope and prayers for you too. I think mine will be next month and will be thinking of you.

That’s great news @FcukBreastCancer! Good margins and no chemo. I hope you enjoyed your shopping.

thank you @cantbelieveIamhere@Inthebasementand @Sbmpp

Ypu will be able to claim statutory sick pay @Inthebasement. I would give macmillan a call. They have a free financial service which advises on this type of issue. I think they also offer an advocacy. I don’t think you are wrong not to want to lean on your boyfriend for money. Check the macmillan website first. I’m sure they will help get you to a place where you can be off work for your chemo and stay financially independent 💐Is there any work you can do for the business from home?

You sound like you had a lovely day!

@Nonamelassthe fear is so horrible and so consuming. Again I’m going to point at MacMillan- they have a telephone counselling service and a “buddy” service. I know you are in France, so perhaps it’s a different charity but, on the phone, they aren’t going to know where you are! With the Christmas holidays and festivities it’s not long until 7th. Hang in there, you will be fine!

I, stupidly, fell over yesterday. My own fault but I’ve banged my knee (just bruised) and my foot is throbbing and swollen. I’m really hoping I haven’t broken a metatarsal. I’m just going to stay off it as much as possible and hope it calms down.

I took a double whammy of night nurse and oramorph last night and slept soundly 😊

love, best wishes and calming vibes to everyone x

Thanks for the replies @Nonamelass @Ventress and @Namechange822
ive looked on the Macmillan website and into ssp in the last few days. The ssp I’ll get wont even cover my rent unfortunately. The macmillan calculator says I’ll only get marginally more than I do already and the shortfall in wages for ssp leaves a gap of about 1kpm for me to try and fill. Good idea to call them though..thats on my list.

@Namechange822 I do already do most of that, and can continue with those parts from home, but its a small business comparatively and unfortunately not the scope to increase that enough to make up the lost hours of being ‘in’ the business for the amount if hours I’ll lose by staying away from the physically present aspects of the job.

I think it’ll be a case of suck it and see as to how I feel and whether I can do quieter shifts where there are less chances of picking up bugs. I love the human contact element of it, and the great relationships I’ve built with regular clients so will really miss it if I need to step back completely.

Congrats on your last chemo! Will you have to have maintainence or does this mean you are now waiting for the final all clear? Fingers crossed for you if so.

@Nonamelass sorry that you are dreading the petscan..the anticipation of one is horrible, but I found the reality was nowhere near as bad as I imagined, though I’m sure its different for everyone and very much depends on the team doing it and your claustrophobia levels. (I’m assuming its a PET CT so sorry if im wrong and its something else entirely). I think its not your first though? So you’ll have real reasons for feeling apprehensive if it was horrible for you. Is there anything we can do to take your mind off of it a bit?

@Ventress Ouch for your fall, that sounds painful! Will you be able to take it easy for a day or two until the swelling goes down? Hope it heals quickly. X

I’m working all weekend now and most of next week..but will catch up with you lovely lot in between the madness of extra Christmas shifts. Wishing you all a well-as-possible Christmas with lots of quality time with the people who you love. You are a wonderful bunch of selfless women, who have made a big difference to the beginning of this process for me. Thank you. Xx

@Ventress oh no!! Thats all you need. Hooe it sorts itself out quickly and you don’t have to go to flipping Aand E , can you pop into the pharmacy and show them?
Thanks @Ventress💕💕 I’ve actually phoned Macmillan a couple of times over the years, for myself and for a family member in the UK. They’re great and don’t mind that I’m in France. there’s actually a woman at work and we ‘ve realized we both had it at 35 at more or less the same time and she was just wonderful on Thursday when she found out about it 💕 . It’s easier to talk to people who’ve been or who are going through it sometimes ❤️ or a bcn.
But yes you’re right I’ll phone macmillan if it gets overwhelming , it’s fine this morning, I’ve been dancing around while tidying up.

That buddy idea is great I’m going to ask about it here and maybe once this is done and dusted 🤞I’d actually like to volunteer for something like that .
Big hugs to everyone xx hope your foot behaves itself ventress

Sending you strength for the xmas rush 😉hope the business makes lots of dosh !!! . Wishing you a lovely time for Xmas too. Ps thanks for the petscan advice 💕

Thankyou 💕

@Inthebasement just a thought… if you are in a private rental and it’s a high rent might it be an idea to put yourself down for social housing ? Sorry if you’ve already thought of that… and obviously the chemo won’t last forever so you’ll be going back to work ( maybe with a mask as per covid?) but it might be worth a look…

Thanks @Nonamelass its possible, but I think would take months longer than the end of treatment to get a place. I have got the option of moving in with BF which we were going to do anyway at some point, but then i’ll lose benefits and it leaves me in a similar place finanacially. I think I’m maybe cutting off my nose to spite my face. Bf is lovely and wants to look after me, I just hate the idea of going back to being financially dependant like I was in marriage. It was a huge error of judgement on my part and I’m scared of repeating it.

@Inthebasement you can claim housing benefit and council tax benefit if your income is low, so you would get that based on your statutory sick pay if you got it.

That does sound really challenging, but good that you can atleast do some work.

Ive got a big scan in a couple of weeks and if I’m signed off at that it’ll be no more chemo and just regular scans. Hurrah 🎉

Hi all
I've been quite quiet this week - it's been eventful!
Son has already left because 'i need to have a good look at my behaviour ' after I suggested that he doesn't spend 45 minutes in the shower things just escalated and by the evening he'd gone back to uni accomodation.
I've had a cold brewing since they've arrived and with the sore throat alongside I'm back to how I felt April/may of this year when being diagnosed and the paranoia Treatment hasn't worked is growing. My oncologist has said it's unlikely I'll get a scan in January and likely February sometime. At least when I was really sick I was too focused on that to worry if it was working but the idea of another 6+ weeks not knowing isn't helping
It feels a little like being back at the start waiting in biopsies and scans again.

@Inthebasementis your rent allowance calculated as part of your UC? I think (no expert though) that you need to ask for it to be recalculated on your new circumstances. MacMillan will be able to help you go through everything, and can advocate on your behalf.

oh @ForestFlowerFairy I’m sorry you’ve had such a crap week. Your son sounds like he could do with someone to talk to about everything that is happening to you, rather than lashing out and taking it out on you. Being back at university may give him some perspective.

You have follow up tests booked in January don’t you? I must admit I fell similarly. I can hardly breathe and I’m scared I will end up back in hospital. My oxygen saturation reading is barely getting above 92. I spent most of yesterday in bed- just concentrating on breathing.

Isn’t it far more likely to be your cold swelling your throat than the tumour growing? Can you ask for an urgent oncology clinic appointment tomorrow? That may help ease your worries.

I think I’ve broken my foot. DH is going out to rent me a wheelchair so that I can get to my hospital appointments this week. Im not sure a crutch would be enough as my lungs as so bad I can only take a few steps without pausing to get my breath back.

Big (gentle) hugs to @ForestFlowerFairyand everyone in this shitty group that nobody wants to be in.

@Ventress oh heck poor you. You are always supportive and comforting, and deserve those gentle hugs back.Have you had your foot looked at?
@ForestFlowerFairy It’s so very hard not to worry about every single symptom .February is torturously long to wait for the scan. I’d defo try and see someone asap just so you can relax a bit.
Kids !!! as Ventress says he is perhaps striking out at the safest person ie the one who loves him the most , which also happens to be you. It’s really not fair but he is perhaps not mature enough yet to realise it..It’s a good idea to suggest he sees someone I think , getting him to do that is a different matter of course…Hope it works out quickly and sending you gentle hugs too.

Evening All

@Ventress
Really sorry to hear about your foot! Last thing you need! Also sorry to hear your breathing isn’t too clever at the moment. Is there anything they can give you to help?

@ForestFlowerFairy
I think Ventress is right, is there anybody your son could speak with? You’re going through a lot, I’m sure he knows that but might be worried and not know how to deal with it?
Is your daughter home with you too?

Sorry to hear you’re coming down with a cold, I’ve had it and my throat was terrible, I’m sure there’s a super cold going round at the moment. I think it’s more likely that it’s the cold causing your sore throat but I completely get the paranoia, I think that’s something we will have for quite some time after going through what we have. It’s one of the reasons I’ve agreed to go along with the psychology sessions. February feels quite far away for follow up scans in terms of you worrying, do you have a specialist nurse that you could have a chat with and see if they can offer any reassurance? Or a chat with your oncologist?

@Inthebasement
Sorry to hear about your dilemma in regards to working, I do think it would be risky to mix with lots of people whilst on chemo plus you might not feel up to it with side effects. Would your UC increase if your hours reduced? I know what you mean about maintaining your financial independence, I’m exactly the same. But sometimes we need a little bit of help. Would you be willing to accept a bit of help from your BF? Maybe let him help with some of the bills but not all of them?

@Nonamelass
Scans are terrifying aren’t they. What date is your PET? We will all be here holding your hand.
Your colleagues sound really lovely, it does help doesn’t it when we have supportive people around us. Have they said what flavour BC you have? Forgive me if you’ve mentioned already, my chemo fog is terrible!!

@Namechange822
Nice to meet you :)
Congrats on having your last chemo yesterday! Would you like to tell us a bit about you? No pressure if not but you’re more than welcome 🤗.

@Sbmpp
Are you all ready for Christmas? 🎄

@FcukBreastCancer
Absolutely fabulous news!! Good margins and no chemo is marvellous 🥳. You can have a nice Christmas now without the thought of chemo hanging over you.
How is your DD now?

@cantbelieveIamhere
How are you getting on with your chemo? Are the side effects behaving themselves?

…

Waving to everybody and anybody I might have missed!
I’m feeling a lot better, now dreading the next EC. I get goosebumps of horror whenever I think about it.

My hair hasn’t started shedding yet, I’ve read the big test is the second cycle. Not sure how true this is. If anybody has experience of EC, when did you start properly shedding? I’ve had a couple of loose hairs but it’s just what I’d normally lose from brushing.

My appetite is buggered so no more cake. Now I eat beige dry foods. Might shed a few of those pounds!

I wasn’t given any steroids after EC. I asked why not and was told that my oncologist doesn’t believe they’re required on EC. I miss my Dexamethasone!!

@cannaecookrisotto I had my EC dose reduced as I was so ill on my last paclitaxel, with the prescription of ultra strong anti puke drugs which really helped.

I think “the shed” happens around day 21, from what I’ve seen on social media. Even with cold capping. This was good to know as I moulted like mad for a few days, getting to the point that I was wearing a soft beanie around the house as the hair was going everywhere. Then it slowed down. The lint roller was my friend. I continued to lose hair at a faster rate than I normally would but it appeared that one accelerated hair loss cycle happened but didn’t stay at that rate, if that makes some sort of sense.

Physio today to see if anything can be done about my buggered joints and muscle pain (yay anastrozole!). Cancer centre this afternoon to have a check up and to be issued with my next 3 week prescription of chemu. Still, I’m here to moan about it, so I’ll crack on.