Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

Topofthecliff** my doctors are missing inaction they have had notificatgions from oncologist I have seen the letters. My beloved dog is having to go into kennels tmorrow I shall not see her again. Been awake all night againb due to steroids trying to damp down symptopms,god Im boredwitless.

@thereisonlyoneofme that is such upsetting news. Am holding your hand tightly.
So sad to hear about your dog going to the kennels. 🌺

Hopefully they will rehome her quickly and will keep you up to date. I’m so angry on your behalf, are you in London? Are you on top of your pain for the weekend? I usually email my gp as there’s no point ringing. I hope you hear something today.

im having my third taxol today it feels strange having a break after for two weeks. I won’t know what to do with myself. Do you still get your picc line dressed on your weeks off?

@thereisonlyoneofme this lack of communication is just terrible and to try to fight to speak to someone is totally unacceptable when you're so ill, I'm so sorry. Just a thought, do you think it might be worthwhile calling the chemo helpline? Not the same thing, but the nurse I spoke to rang the GP on my behalf when there were issues over my first Covid jab. I'm thinking of you and your little dog and sending you love Xxx

@thereisonlyoneofme please please please let me or Top call your awful GP for you? I DMd you a while ago with my details & I am so furious on your behalf that you have been left like this. I am very good at channeling my fury into getting things done. I know the magic words to say to GP surgeries to get medications, appointments & attention & @TopOfTheCliff does too. You need sleep for a start and there are certainly drugs for that which work well in the short term. Let us take this on, I know you must feel so absolutely done in and hopeless. I know how that feels. You need someone to advocate for you.

If you’d prefer someone you know in real life I understand, but please let them advocate for you. You’re going through things no one should go through; this lack of care from medical side can and could be fixed though.

@thereisonlyoneofme this is absolutely unacceptable! Please take up the offers from Mowly or Top to advocate for you, it’s totally unfair that you are having to fight like this for basic help!!

I am also sorry beyond words for your little dog and for you having to give her up. I hope they find her a lovely new home very quickly.

@Makemineadecafplease I was mulling over the side effects of chemotherapy and IIRC the docetaxel gave me a sore mouth and bottom with loose stools, mild neuropathy in fingers and toes, and minor joint aches. Nothing like as fierce as FEC was. Twice I got migraine from not hydrating enough but I was okay if I juggled all the loperamide, painkillers and fluids correctly. It was tough but each round I bounced back before the next dose. My hair started growing back on it too.

I’ve just been for a nice doggy ramble by the river with a friend. I can walk for about 30 minutes now. Slow and steady like a flipping tortoise!

Thank you so much for replying.
I have very few side effects from taking the Anastrozole. My worst is lack of sex drive (I feel nothing during sex) slightly dry eyes that I manage with eye drops and hot flushes.

My joints are so far ok. I'm just wondering if my side effect is the breathlessness. I've not taken them for 2 days. I'm going to ring my breast care nurse and say I'm having a break from them for a month and see what happens.

If the breathlessness continues then I know it's something else.

@Makemineadecafplease I finished 4 rounds of Docetaxel at the end of November, following 4 rounds of FEC. I was really worried about starting the Docetaxel as I really struggled with the FEC, it made me feel really awful. I read some online cancer threads where most people said they found Docetaxel much worse than FEC, but for me it was definitely the other way round. Side effects for me (mostly in the first week) were: feeling very, very weak and listless, a slightly sore mouth, taste affected, bloody nose, nerve pain in feet (still got that), aches and pains for about 3 days (paracetamol def helped), disjointed sleep (think that’s the steroids though), and for me, really awful constipation. That make me feel very unwell, and I wasn’t ready for it as the oncologist had told me I would probably suffer with diarrhoea. Drinking lots of water and using Laxido / softeners helped enormously.
I cold-capped and didn’t lose the hair on my head at all.
I’m in awe of all of you who manage to work through chemo. I don’t know how you do it. That said, I’m a teacher and there was just no way I could do that job while going through chemo.

Ive just had my third dose. I was shocked when three nurses said they cant believe I havent cold capped as my hair is still so plentiful. You know what will happen now that theyve said that dont you?🙂

Thank you all for your replies.

I hope everyone has an enjoyable weekend.

@thereisonlyoneofme Im so sorry about the lack of care you are receiving. And your lovely dog. Please let the v kind posters fight for you.

@thereisonlyoneofme so sorry to hear the news about your dog. That must hurt like hell. I’m sure she will be rehomed quickly but that will not fill the gap in your heart. I wish you some peace, sleep and less crap GPs.
(please let posters advocate for you, you deserve it.)

@thereisonlyoneofme I will be thinking of you and your dog today. I hope you get some response from your GPs…it’s totally unacceptable.

@thereisonlyoneofme you and your darling dog are very much in my thoughts. It sounds like a very caring place you have organised for your dog and they do settle in quicker than we think. Today will be a tough one for you, it’s really not much and I don’t know if you are a hugger but I’m sending so many hugs and hand holds to you today.

@thereisonlyoneofme Also sending you my virtual support to you at this horrendous time, not that it does much but I do acknowledge how awful it is. I encounter people rehoming their cats at the rescue centre I volunteer at & it's heartbreaking, as anyone's who's ever loved an animal will know. But the animals are treated so well so try not to worry about side of things at least.

Has anyone paid for private surgery? I've been told even though it needs to be within 4 weeks it will probably be 4 + months before I get the survey I need on the nhs because of the backlog and the fact that the surgeon who needs to do it is a plastic surgeon and they are so busy with other things. My amazing in laws are offering to pay for my surgery and lymph node clearance privately. Do I call the hospital directly? I didn't ever deal with private patients when I worked there.

I haven't heard from my bosses at all since I told them I have cancer, its so odd. I've sent my sick notes and I've made it so I get a notification when my email is opened but no reply at all.

Long live the nhs eh? (As an employer)

@PumpkinPastiez I made the same enquiry at our local Spire hospital as my NHS plastic surgeon also works privately there. They advised that, although they can provide a prophylactic mastectomy + reconstruction (planning this once chemo is finished) on the “healthy” breast, they would not operate on the diagnosed breast. Not sure if this is the case everywhere and I didn’t enquire anywhere else. Are you having chemo or rads prior to surgery due to the wait involved ? My Oncologist and chemo treatment are private. I don’t know what cancer you have / if it will help, but In light of the long wait for surgery you might want to make enquiries on that side. Just Google whatever hospital you want to be treated at and add “private care” - not all hospitals will offer. If it helps, I’m up North and mines at Christie’s Manchester. Good luck.

P.S. People can be very weird when it comes to the C Word BUT it might also be a misunderstanding or they think they are giving you space to get your head round things? I had the same experience with my employers, advised them, submitted sick note got an email back as acknowledgment and that was it … nothing. They then texted the day after my operation to ask how I was and if I’d received the flowers from a few weeks ago, course i hadn’t, the next day a lovely bouquet arrived. No idea what had happened but for weeks it did niggle me that I’d been stepped over and forgotten.

Also NHS worker here. My manager did ring me but it felt like a courtesy call chasing my sick note up. However the nurses Ive worked with for over ten years are totally there for me. Even fighting over giving me lifts. Im trying not to get them too involved with that as I am dreading them to all want to come into my little flat afterwards😃

i got a letter yesterday saying I will be getting the capability to work payment I urge you all to apply for it. The form is very straightforward for cancer. It will be three months before it comes through but it will help as my wages will be due to drop after that.

the benefit of being NHS is that we do get good sick pay, when did you all go back to work? Or when are you planning?

@EachandEveryone is applied for ESA, is that the same? If so I’d encourage everyone to apply for that too, every little helps.

I returned full time 3 sessions into my 6 session Chemo. I was bored at home and had the luxury of being allowed to do my hours at home and take special paid leave for chemo day and the day after. I’d then take AL on the Monday (chemo was on Thursdays 3 weekly) and be fine by Tuesday. I worked fully at home until after it ended and started attending the office 2 days a week about a month later. I was fortunate with my area of work and my employer though. For a physical role I’d have probably stayed off throughout and maybe started a phased return a month or so after chemo ended.

All my chemo side effects were gone within 2 weeks or so of it ending, again I was very lucky with this. My energy levels were normal not long after.

@AGreatUsername that's such positive news, good to hear.

Hi thanks :) my surgery will be at the Christie and they do private surgery as well as chemo and radiotherapy. I think I'll contact the private wing tomorrow and ask for a price. Hope you've all had a nice weekend x

Im abit down today. Is this normal when you have a break in chemo? It feels weird not having any appointments coming up. Plus the lump doesnt feel like its going down and im scared its not working.

@EachandEveryone sorry you are feeling down. It’s the cancer rollercoaster which you have boarded. The smallest thing can give you a wobble, an unkind word or a delayed treatment. Don’t worry about the lump it may stay the same but be dead cells inside, it’s too early to tell. I found on the down days I had to concentrate on small pleasures like a nice coffee in the sunshine with DH or a flowering plant in my garden. It passes like all things.
I’ve had a wonderful weekend catching up with all my siblings for DMs 89th birthday. It was a joy! I appreciate them all much more these days and they seem to be showing me more warmth too.
The down side was seeing how unfit I am even in comparison with DM 😂 I truly have a mountain to climb and having done it all in 2021 I am quaking at the effort needed. I need to trust my body. Part of me thinks there’s no point if the cancer is going to come back again. I might as well eat drink and be merry. But my DF took that approach and lived 30 years longer than he expected!
I’m still sore from surgery so can’t do much yet. That’s frustrating but it will pass. I don’t want to wish my life away but time is hanging heavily here. Grrr

Thinking of you @thereisonlyoneofme and sending hugs

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