Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@Lunificent I seem to be quite drug sensitive and probably not a good poster child for Kadcyla. It's easier than full chemo but not as easy as I was hoping. Like all the rest - it just seems to vary a lot person to person. I'm having my 3rd infusion tomorrow and dr has prescribed new anti-nausea for after the aprepitant which is only for the first 3 days. Yes - I also heard and read that for her2 chances are about 50-50. I knew before way before surgery though, from my last MRI which was easier in some ways - pathology was just details.

My brain scan is 15th. Lady on the phone sounded apologetic about the date but I don't want the scan in a chemo week anyway and I've been around this block enough to know that another week will make no difference. And part of me doesn't really want to know.

I'm seriously practicing my stoicism and zen. If this scan is clear - there will be more so I need to be able to keep calm and control the anxiety. I think I'm managing quite well at the moment - see how that goes if I start feeling sick.

Little update on me, I have managed to pay for a private appointment on Wednesday, same dr different hospital. I work for the trust it was previously booked at so I'm going to email him using the look up function and basically just email him asking him if he knew all the breast cancer rapid access clinics have been cancelled until late November. I used to work at the Christie where I'm now paying to see a dr. The only difference will be that the waiting room is a bit nicer .

I'm so so angry. I'm 30, no children and have 4 female relatives who have breast cancer, 3 have died, my mum and 2 of her cousins and an aunt. I am not a routine case, and even if I was it's not good enough to be left 12 weeks. I'm going to start a petition tomorrow for the government to put cancer treatment back on the agenda.

I know covid is hard. I got deployed to covid icu but it's no excuse, they could have sent their cancer clinic patients to a local private hospital but instead they've just cancelled it.

I'm going to complain to everyone who will listen and I don't care who I annoy in the process.

I'm sorry I've just been whining on this thread but I'm so grateful for the outlet

I'll certainly sign that petition it's n

I'll certainly sign that petition. Although you shouldn't of had to go through what you have to get seen I'm glad to hear that you have managed to get an appt sorted. X

I'll sign too, and I don't think you've been whining at all. The way you've been treated is terrible.

@Bakewellisntjustacake that is really appalling and unacceptable.

@Bakewellisntjustacake It really is dreadful, and not being able to be referred to any other local hospital is such bad practice. Whatever happened to patient choice?

I'll definitely sign a petition.

@Bakewellisntjustacake this is just unacceptable, how upsetting and worrying for you. I'm pleased you've managed to sort out an appointment but you really shouldn't have to deal with this stress. I too will sign your petition xxx.

I’ll sign the petition.

@Bakewellisntjustacake count me in, too. An absolute disgrace. I just about died from worry when I had to wait one week between seeing my GP and my appt. at the breast clinic in June 2020. Mine was a recurrence (and I am in Scotland), so maybe they did take me a bit more seriously.

I have been floored by the news re: Sarah Harding. I woke up all anxious and fretful. I just wanted to smash the house up from frustration (and I am normally the meekest person around), what a fucking fucker cancer is! I wasn’t a fan of GA but they way she went and her age (10 years YOUNGER than me) just made me feel… well, ridiculously angry. Bawled my eyes out and everything.

@Acinonyx2 keeping my fingers crossed for 15th Sept.

Wishing all as peaceful and stress free week as it is possible. . I am still lurking. My next oncologist check up is on 5 Nov., no doubt I will be crapping myself silly over it. Zoladex injection at the end of October which means being back at the chemo ward. I can already feel flashbacks looming.

@balkanscot yes the news about Sarah Harding has been very sobering.

Just back from chemo. Forgot again which level I parked the car on. I thought I hadn't gone up as far as usual so I started on level 2 and got all the way to 7 - then searched them all again back down to - you guess it? - level 1 How could I forget going up only one level There was a lady below eating her lunch on the grass watching going up and down the stairs - no doubt thinking 'that daft woman's lost her car again...' And I was feeling sick and needed a wee

Not as bad as humiliating as forgetting to pay for the ticket after exchanging it at customer services for a patient's discounted version. Second time was in rush hour - terrible queue to the barrier then - ooops. Squeezing out of the door to do the 'walk of shame' to the pay machine.

petition.parliament.uk/petitions/596474/sponsors/new?token=DXfuch79nIzQAxXVyKrX I should probably name change now but o don't really care

Ive got the most dreadful permanent hunger pains! Came on a couple of days ago, assume its the PARP now kicking in, i could actually eat a horse and possibly follow it up with cow. Im hoping that its not going to last, I have to keep telling myself dont keep eating it doesnt make any difference ! The usual side effects are decrease in appetite .

Fourth day post chemo and still tired all the time. I'm only awake about 4 hours a day. I expected to be tired but I've never felt anything like this. I'm wondering if I'll ever be able to do a full day's work ever again (ok, maybe a touch dramatic). Do some people really manage to work through chemo as my oncologist suggested?

@SewingBees I haven’t worked since I started treatment but I was fine whilst having FEC. It’s the Docetaxol that has really affected me.

Did anyone who had breast cancer have the change to freeze eggs?

@SewingBees I had planned to work through but one week in (last Nov) I went sick through to June. There was too much of the time I couldn't work. I'm now working PT - and I can't imagine leaving the house for a full time job. For a start I have so many hospital appts.

Some people do work through - but no-one I actually know personally.

@peridito thanks for that. I have bought one of those cushions. I currently have a rather precarious pillow arrangement which is very comfy and I sleep well but my neck and back are feeling the strain. I'd love a massage but guess the whole lying down thing is tricky, then there is covid of course. My poor head is weary, side sleeping helps but can give me reflux I find. I had though about one of those adjustable beds but it feels a bit granny 😄

@SewingBees chemo totally knocked me out too this time and it's because is was severely neutropenic so I would may be get in touch with someone about how you are feeling. I didn't have this problem when my neutrophils were coping. Do you have filgristim?

@MrsPnut sorry to hear the Docetaxel is making you feel rubbish. Hope the chest situ is improving.

@Bakewellisntjustacake that's really terrible and I'll sign too. Hope the appointment goes well tomorrow.

@Acinonyx2 sympathies with the forgetfulness. I completely forgot to take my dexamethasone yesterday for today's chemo and I've asked the nurses twice if they are going to take my blood pressure even though they did it an hour ago. I had zero memory of this until they said. There is no way I could drive myself back from chemo as my brain is fried from the drugs. Hope the Zen stoicism is holding up and keeping everything crossed for the 15th.

@Lunificent wishing you all the best for Monday.

@HumphreysCorner hope your DS has a lovely birthday 🎂

I'm on the ward waiting to have my chemo but I forgot to tell them I think I have a UTI until an hour ago so this could all be a massive waste of everyone's time 

Big wave and love to everyone and thinking of you @ChocolateandCheese

@quinin having to sleep sitting up is torture! As soon as I possibly could at about 10 weeks on from surgery & complications I started half-propping on my side at an angle and went from there. I think it probably has had consequences for the healing and shaping process but I just couldn't stand it any more.

If this going to be longer term maybe a granny bed is the answer!

@quinin I have found that taking 40mg omeprazole in the morning before food has helped with reflux .

20mg at night was recommended but was not effective .

@peridito thanks, I'll try that. I'm currently taking 20mg at night but it's varies on how effective it is. I think the chemo is aggravating things too.

@Acinonyx2 it's for life so granny bed may be the answer, plus it would match my granny knickers, so perhaps I could just go all out granny and make it a theme 😄

I've been sleeping upright since Feb and gotten kind of used to it. It does mean I tend to nod off anywhere though.

@quinin Good advice, thank you. I've put a call into my local team. Hopefully I'll be awake when they ring back. Yes, I've been taking Nivestim since Saturday so hopefully that will help. I did notice at my pre-assessment that they'd recorded my height wrong at 6cm taller than I am, but they did say they'd recalculate my dose before giving it to me.

I've been awake for a few hours now and eaten quite a lot so for the first time in days I don't actually feel like I need to sleep but I'm still completely spaced. Trying not to worry about the burden this is placing on my husband who is now shopping, cooking, cleaning, doing the school run as well as trying to work full time, all while I sit on the sofa staring into space.

@Bakewellisntjustacake I'm waiting for your petition to go live so I can sign. I told my husband about your situation and he was so angry on your behalf he had to go and pace round the garden.

It's a lovely sunny warm day for us in Northumberland today - the first in a while - so all the windows and doors are open which is lovely but does mean we have wasps flying in constantly. I'm trying to find the energy to shower and wash my hair, possibly the last time for a while (the hair bit). My wig arrived today, it's a good match for my natural hair but the parting is on the opposite side so that's going to take some getting used to.

I’ve been for my follow up appt this morning after my lumpectomy and SNB. They are doing an oncotype test. Has anyone had any experience of it? Thanks

@SewingBees could I ask where you got your wig from? I'm thinking of investing in one. Was it easy to find something you liked?

@grateful3 I've not got BC but did have a range of onco tests including genetic profiling. It guides treatment options and risks if BRCA positive etc. Mine were all negative bit im sure someone more knowledgeable will give a more useful answer.

@grateful3 My tumour (breast) was sent for oncotyping. I understand it's a series of genetic tests that give a score which indicates whether chemo is likely to be beneficial or not in terms of reducing recurrence. It's not an indication that chemo will definitely prevent recurrence because it's all based on statistics, so the choice whether to go for chemo is still yours. In my case the oncotyping suggested that chemo would reduce the likelihood of recurrence and so I decided to go for the chemo.

@SewingBees thank you. That’s really helpful.