Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support 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.

@TopOfTheCliff I'm following your progress through round two - hoping it goes as smoothly and uneventfully as possible.

Hello again friends old and new. My QOTD is small & practical today not huge & unwieldy for a change ... Anyone with primary school age children & on chemo or other cancer drugs that suppress immune system?? Flu vaccine stuff - school sending out permission slips. I know the nasal vaccine is more effective for children but it's a live virus & the school bumf & some other places say to avoid contact for two weeks - haha that just won't work, she's 4.

So she could have the jab; but ow (I won't be there though so I will be spared her second-hand pain) but more importantly not quite so effective.

I have booked to have flu vaccine myself as soon as available - not until Oct 10. I don't know what date school is doing theirs, will find out.

BUT other good sources of info from cancer charities etc also say avoiding all contact with someone who has had the live vaccine for 2 weeks is only necessary if you are v. severely immunocompromised from cancer treatment & you are usually isolated etc. Seems like a small risk of catching flu from a live virus & the 2 week advice is a bit overkill?

@Runningwithoutstopping fingers crossed for your scanxiety. I have a scan on friday so my dull roar of anxiety is really ramping up; more of an all-singing, all dancing, all-encompassing terror. Steampunk wedding sounds an excellent distraction.

@MrsMontyD hello & welcome & sorry you find yourself here. Yes you can book covid jab online by saying you are immunocompromised/having treatment for cancer. I have taken letters along but no-one's ever asked me for them. But I look like a cancer patient, baldy twat with picc line.

Pre-surgery sounds like a good bet to me. I think a v prime place to get covid is in a hospital

@TopOfTheCliff sadly waves goodbye to your hair

Hiya, haven’t checked in for a while.
diagnosed Aug 2013 reoccured July 2022.
i spent some weeks in hospital but now back home under Hospice at home care.
hardly any pain. Just on steroids
had one round of chemo but then refused more.
issue I have is that I still want treatment to try and buy more time but the system seem to want to run me down!
Trying to get private second opinion is so much harder than it should be. I even have health cover but would pay as I have some savings.
onwards with the battle today.
my legs are swelling up and look beautiful 😄

I have telephone appt with Onc tomorrow but they haven’t organised blood tests so how will they know what’s going on?

will speak to consultant secretary and GP as I don’t think I am being treated as I want, will also keep pursuing 2nd opinion.

it’s so frustrating

Wednesday is my three-year Cancerversary, or rather, the date I was diagnosed officially with cancer. The boom didn't drop until late October that it was Stage IV BC, but as October is already way overloaded with pink BC crap, I prefer to mark the original date. Amazing how fast time has gone by, but doing very well on my second line of treatment and feel and look completely normal. Perhaps a bit more cynical and definitely not up to taking anyone's bs, but it is very freeing in a way.

@mowly77 my oncologist said 'absolutely no' to the live vaccine flu jab for my son when I was going through chemo. I tried to get him a jab but my GP practice was very unhelpful they initially said yes in theory but in practice it never happened. I think it came down to budgets( why would they do something that's already allocated for in the school/ health budget).D'S has asthma so I spent a worried winter that he would come down with flu & guilty that I was the reason he couldn't have it. Hopefully you might have better luck organising it.
I hope your scan is okay and everyone else who is waiting for results gets them soon and is treated with care and compassion during the process.

Hello everyone, and thank you for the new thread.

Sorry to hear so much anxiety and so many struggles and frustrations in these updates - big and small. Keeping fingers crossed for everyone waiting for next steps this week.

Quick intro to me - I am relatively new here, diagnosed 5 weeks ago today with grade 3 BC, ER+, HER-. Tentatively Stage 2 but one positive node at biopsy so am fully expecting that to go up with surgery results - have had full node clearance. I posted about my stupidity in delaying seeking treatment here. I am 2 weeks post-surgery and feeling pretty good physically - back to doing small bits of work (I'm freelance), but overwhelmed with the anxiety and stress of it all. I have a walk with a friend in the diary for this afternoon, so that's my nice thing for the day.

thank you @Runningwithoutstopping I think the school is also offering the jab as nasal spray contains pork gelatine (yum!) so she can have that. I'm going to double check with BC nurse this PM as I have another question, but I already feel they will err on side of caution. That's pretty shocking given your son has asthma & they still couldn't pull their finger out... but on the other hand, given some of the tales about the NHS on the forum, perhaps not shocking at all.

it feels wrong to say happy cancerversary @HerbalRefreshment but it's very good to hear you're doing well on second line. I'm about to switch & it's a real headfuck.

@foofooyeah It's so hard to be heard sometimes isn't it? What a headfuck (another one). I hope you get somewhere with your onc this afternoon about treatment. You absolutely have the right to it, and a second opinion.

@dotty2 I read your other thread. Don’t blame yourself, it’s human nature to go into denial of something like this. I was working as a GP when I found the first lump during lockdown and ignored it till DH made me get it checked out. I should have known better! I had a grade 3 25mm sentinel lymph node I didn’t know was there too. But it all disappeared with a complete response to treatment.
Sending calming waves towards you - all will be well!
Top xx

Oh god, my 5 year old is due the flu nasal vaccine, I hadn’t even thought about the live virus bit. Bugger.

On the plus side, I got my PIP assessment report through the post and I think the lovely lady who did it has ensured I get enough points to qualify which will be a weight off my mind.

I home educated my DD for a year and a half at secondary school age and it took a year to get her vaccinations sorted out through the central vaccinations service, I'd phone up and explain the situation, then they'd tell me I needed to speak to the school nurse, so I explained that she didn't have a school or a nurse, and they'd tell me the name of someone I needed to speak to who would never call me back, so then I'd phone again and speak to someone else and the cycle would begin again! You can see why people end up not giving the kids vaccinations, I had to be really persistent.

@dotty2 I'm also freelance. It gives flexibility in some ways but is a nightmare to coordinate in others. I'm lucky that I've had enough work from existing clients, there's no way I would've been able to take on anything new since I was diagnosed in April. I am partly living off my savings though.

Yes, being freelance is a two-edged sword. Loads of flex, but no work=no income. I'm lucky in that I've got a good savings cushion and all my current projects are working as part of a team of associates, and colleagues are being very supportive about picking up things I can't manage. I'm worried about the longer-term, though, as I can't think about pitching for anything new for the foreseeable future.

Thanks for the good wishes @TopOfTheCliff - sending them right back to you too x

I've just been for my GP appointment to discuss my blood results. My CA125 had come back normal but I have several symptoms of OC as well as a strong family history of female cancers.
GP told me that because I'm not post menopausal I don't fit into the criteria for a scan and she is reassured by my bloods. I've to try buscopan for IBS for a month and if no better then they will think at sending me for one.
Tbh I'm not sure what to feel and think. On one hand I'm thinking great, bloods are normal but on the other I'm scared they've dismissed me due to my age and it's still going to be cancer.

Hi all, looks like I need to join. Found a lump and my breast clinic appointment was yesterday, not one lump found but 3 lumps and armpit lymph node also mentioned. Feeling physically sore from all the biopsies and emotionally I'm in a hell of a mess. Need to wait until the biopsies come back to say what the next step is but will definitely be surgery. I've got 4 kids and I'm so scared about what is going to happen and if it's already spread

Hi everyone. Just had my first lot of chemo. Does anyone else we alot while they're there?! I went five times for a wee🤣 no one else seemed too.

@BonnieBairn could you pay for a private ultrasound? I think they’re about £200. A lot of money but may put your mind at rest.

@fudgecat Im sorry you’re here. There are so many wise BC ladies here that you will find lots of support and answers. It’s a scary scary time for you, I also have young children (5) and have barely slept with the worry of leaving them since diagnosis in May. It’s really rubbish. Be kind to yourself.

@fudgecat welcome to our lovely thread, so sorry you find yourself here.

@Chocolateismyfavourite I used to wee loads on chemo, several times there and then the enormous horse wees when I was home. It didn't help that I had huge fibroids. Tmi but the hospital journey back was over an hour, so I would wear Tena Lady pants for chemo days after my first chemo when I didn't make it home in time.

@AGreatUsername I did think about that but then I think maybe I'm just being ridiculous. I honestly don't know what to think.

@Chocolateismyfavourite I also wee tonnes on chemo, overnight is the worst I think my record was 19 times! It's probably not accurate at all, but I say I'm weeing out the cancer, it makes me feel better about it all 😁

@Chocolateismyfavourite I put on during the day then lost half a stone overnight with the peeing! I think it's partly the IV fluid they give you but also I try to drink a lot to keep hydrated as I assume it may help to protect my veins.

@dotty2 I'm managing work in the short term, in some ways I want to take more time off but it is the longer term thing of not having a business at the end of this. I've had three years of having to rely on savings, my DF died, my DM was seriously ill twice and I cared for both of them, I lost half of my income during Covid and was excluded from financial support. Obviously it's better having savings than not, but I would like some day to be able to use them for something nice!

@fudgecat sorry you're here, the beginning of all this is a particularly challenging time 

@BonnieBairn not to worry you unnecessarily, but with a strong history of female cancers I'd either insist with the GP or pay for a scan. Chances are you're fine, but I had a stage 1a OC that didn't show in my CA125. You're best to catch it early.

@ashitghost , hi, my neuropathy is being treated with gabapentin. When I took it during chemo, it flattened me, but now I am not on any other strong meds it really has no effect except to help my feet which is where my neuropathy manifests. My oncologist prescribed it, then a neurologist specialist confirmed it and upped my dose. It’s working for me atm. Good luck!

Thanks for all the replies about the weeing, good to know I'm not alone. Love the idea of weeing the cancer out 😁 luckily it's only 25 mins from the hospital to home, so wasn't to bad this time.

@SierraSapphire thanks for replying. I did say to my GP the stats about the number of women with early stage OC that had normal CA125 levels but she wasn't listening. I think maybe I will push for a private scan. I'd rather be overreacting than have undiagnosed cancer. My gran died at 39 from ovarian cancer, I'm the same age. But because I wasn't post menopausal I didn't meet the criteria for a scan.

@BonnieBairn Can you speak to your practice nurse, mine referred me for an ultrasound scan after I spoke about some abnormal bleeding. It didn’t find my cancer because it was a squamous cell cancer in my vagina but it might be easier than convincing the GP.

@Chocolateismyfavourite I could wee forever post chemo, my first drug needed 1ltr of fluid before, 1ltr with and 1ltr afterwards. We lived an hour from the centre as well.
It’s even more disconcerting with epirubicin when your pee is red.

I am home from sunny Jamaica, back to grey UK. I have an annoying cough, and have done for the last week.
I saw my lymphoedema lady today and she was amazed at how good my tissues were after a 9 hour flight. I think the daily swimming has helped and maybe I should be able to get a pool built on the NHS.
I am not taking any meds for my neuropathy but I am seeing my oncologist in person tomorrow so it will probably be discussed.