Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

New thread

We saw them a few years ago at Hyde Park, but DD is coming this time, I've made sure she has good taste in music @HauntedDishcloth

Hi all
I haven't read the thread so apologies if I'm interrupting in the middle of a particular conversation.

I'm just stressing out and feeling a bit low. I've been through a year of pretty full on treatment for breast cancer (her2 and estrogen positive). I saw my oncology consultant when I got my diagnosis in April of last year and haven't seen or spoken to him since. I haven't had any scans etc since just before my surgery in November.

I was supposed to have an appointment in February. It got cancelled and moved to May. That got cancelled and moved to July. Today I got a text that my appointment has been cancelled again and moved to the end of August. The text came 10 minutes after their office is closed so I couldn't get anyone on the phone. I don't really believe the August appointment will happen at this stage.

I needed to ask some questions - for example I was told not to take any supplements while on Tamoxifen and my GP has told me recently that I'm anaemic and I don't know what to do. Also no one's even told me if the treatment worked or whatever. I hear about people being given the all clear but nobody has told me anything. I guess things are ok if they are ok with cancelling my appointments but I feel so abandoned.

I don't know why I'm so emotional. I've been crying all evening. I just wish the message hadn't come on a Friday evening so I have to get through the weekend before I can get someone on the phone.

Anyway, thanks for reading!

That's really bad @Lurkylurks - they should keep to the recommended schedule of follow ups. Mine was a bit late too, but not that bad. You could try the secretary or otherwise PALS.

It's important that you get enough iron as well as the co-factors that help it to work if you're low on those - although there are some things you shouldn't take with Tamoxifen, as far as I know iron isn't one of those things, but I'm not a doctor, and I'm not on tamoxifen! I was concerned about the link between iron and cancer, but I take gentle iron. Can your GP help with that in the meantime? Or do you have a breast care nurse?

I finish my chemo in November and I have found these last few months really difficult too

Your DD looks lovely LucysMam

Lurky I am on Tamoxifen and been told can take any supplement, its quite a lot of anti depressants I can't take. I take Wellwoman 50 a lot of days and helps.

Just been swimming, sauna, steam room and jacuzzi. I did have a bakewell tart.

Lurky I had surgery surgery2 then chemo radio Tamoxifen and I had all clear from surgeon after surgery 2 but no further scans. Well a bone scan. Finished Aug 22 radio. Though for diep was a abdominal ct and that was clear.

@Lurkylurks , that’s really tough. No advice but lots of sympathy x

Thanks @dotty2 you’re so right about the headphones. Always someone’s IV going off all night. Though I fear I was the worst offender getting 2 different AB’s through my chest port, then flush, then back on the fluids. I made a bit of a fuss when I arrived about needing the bed nearest the bathroom and they did arrange that for me. I proved my point by needing the loo every hour on the hour and had to resort to the glamorous incontinence pants as I still didn’t have enough time to unplug my IV pole and make it to the bathroom on time.

Welcome @Lurkylurks I hope you get some answers soon.

Sorry to miss afternoon tea. I doubt anyone wants to share my toast and vegemite - but there will be no doubt I’m Australian!

@Lurkylurks basing this only on what my oncologist said on Weds about cardiology will have reviewed my notes/ct/ecg by now so take it as positive they haven't rushed to get me through their doors, I would take it as alright that they're ok moving your appointments.

That said - if I wasn't hearing anything & just chugging along with weekly chemo, bloods, and the rest, with zero contact, I think I would feel abandoned too. I'm sorry you've got to wait the weekend to try and speak to someone - it must be so frustrating.

I've thought of something else after your earlier reply @TopOfTheCliff - they've been struggling to get blood since the first drain when they gave me a variety of pills to bring my bp down(which didn't work and the ramipril still isn't working to lower it now 🤷‍♀️). Would it be possible for those pills to be contributing to the slow blood flow & maybe, therefore, the blood tests? Sorry to bombard you, I will make a note for my gp/oncologist depending which I speak to soonest.

Hi @Lurkylurks and welcome. My first BC was triple positive like yours. I had chemo then surgery and radiotherapy, followed by another 8 months of Herceptin injections. My mammogram and scan was in November 2020 before surgery and I wasn’t scheduled to have another one for a year. I didn’t see anybody while I was on Herceptin except the chemo unit team. Once I finished I was able to call the BCNs if I had any worries. Because I found a stray lymph node they saw me and biopsied it but all was well. That meant I never got my review by the surgical team because they saw I had been reviewed but nobody told me. I pestered for the mammogram but it took six weeks of me crying down the phone to the secretary to get the results. In other words I recognise the abandonment you are feeling and suggest you need to call the BCNs and tell them you are feeling neglected. Give them the list of missed review dates and ask them to see you or arrange a follow up in clinic. Our nurses do everything the doctor would do anyway. If you have any actual concerns like scar tissue or lumps or pains then definitively ring the BCNs and report it. That is how I found my second cancer 6 months after the normal follow up mammogram. But that is another tedious story. Good luck and I hope you are feeling a bit better after a good cry.

@lucysmam I don’t think the medication would make your veins collapse unless you are on a diuretic and not drinking enough. I always try to drink a pint of water before I go in for my bloods. Maybe the poor veins are damaged from overuse.

Used my one spoon today to visit my sports club but had no energy when I got there so had a cup of tea and came home. What a lame day!
Top

Hi @scandimandy good to hear your op went well. I picked up on your note about being in pain at the sight of the drains. Could it be that the drain is sitting on a nerve as I had the same thing and couldn't move for almost two days. In the end the nurse came by and removed it, but by then the drains were ready to come out anyways. Just something to consider. I wish everyone a good weekend. Ta

Thanks so much for the welcome everyone.

@remaker and @dotty2 thanks so much x

@SierraSapphire Thanks - that's reassuring. Yes I guess its probably ok to take a supplement if I need to - it was probably just a blanket statement from a very rushed junior doctor for simplicity's sake. I guess it would just be good to be able to check. It was because of Tamoxifen that he said not to take iron though. Yes I'm sure I can ask the breast care nurse or check with the secretary that they're aware my appointment has been cancelled 3 times and if that's ok - I think it's just that it came on a Friday afternoon and having to wait the weekend that's getting to me! Hope all is ok for you - sorry I haven't read the thread so don't know people's stories yet.

Thanks @Silkierabbit - that's reassuring to hear. The thing is I've never been given any all clear though. Congrats on getting through treatment and clear scan etc.

@lucysmam Thanks so much - yes I'm trying to view it that way - that it's a good sign they don't feel the need to rush me in there. But I'm not going through treatment anymore - I finished chemo last September and all other treatments had finished by this May and no one's told me anything. Hopefully it is a good sign but I don't want to take that for granted as organisational glitches can happen! It's going to be niggling at me until Monday but I'm sure I will survive!

@TopOfTheCliff Sounds like I had the exact same treatment regimen as you except I was switched from Herceptin to Kadkyla after surgey (but that's just Herceptin with an extra component - I don't really understand it tbh, but didn't get any extra side effects). Thanks, yes I am feeling better after lots of tears and also because I now have one less night to get through before I can try and get hold of someone. Gosh that's terrible you had to wait so long for your mammogram results and basically had to beg for them! So sorry to hear you had a recurrence. I hope you're doing ok.

@Silkierabbit and @TopOfTheCliff , thank you! I just panicked as I had bought insurance, Isaid had had bc, but not on active treatment and suddenly scared it would be invalidated because of that stupid six month infusion. (Which I am very grateful for, but received news of my Dad’s death while having the first one so blame it, totally rational). @TopOfTheCliff , I am going to Gran Canaria, can’t wait.
@lucysmam , your daughter looks beautiful. My youngest had her leavers prom last month, great occasion.
@GayPareeee everything crossed for you, the wait is awful.
@CoachBeardsJane hope you are feeling better. I found after surgery once the anaesthetic completely left I started to feel a bit stronger everyday, though often a bit teary if I thought back to what I’d been through. Which you need to do to process it really. It’s hard.
@Lurkylurks , I hope you’ve been able to find some answers to put your mind at rest. I’m sorry no one has given you a prognosis, sometimes everyone seems to think someone else has done that job. My surgeon was the one to tell me she was ‘confident’ I was cancer free.
@Remaker ,hope you are not in hospital too long and you can get some peace.
Wishing us all love and light, this is a long old journey and can make us very weary❤️

@TopOfTheCliff no, I'm not on any diuretics. Maybe my veins are just not keen to share any more 🤣 I'll try and increase my water intake a bit and see if that helps, although I pretty much always have a glass of something cold on the go lately. Thank you Top, if I could actually share my spoons with you, I would.

I've just measured my stomach before brekky, as I have been doing, and it's 28.5" today - still not quite me sized but definitely heading there, which has made my day already!

Unfortunately, I tried my skinnies on yesterday before heading to chemo, and they are still loose. I think I need roughly a stone still which is really annoying because I'm eating really well. I guess putting it back is a very slow process 🤷‍♀️

Thanks @Podgedodge yes I'm thinking along the same lines, that they're all so rushed off their feet that no one realises no one has spoken to me.

@Lurkylurks there is a facet of being a cancer patient that demands we advocate for ourselves. In the giant and well meaning machine that is the NHS we can get lost unless we shout. Being trusting and passive is not in our interests. It’s not the fault of the lovely staff but they are drowning under the tidal wave of work. I check now, how long till I should hear back from you? Then I start to harass them nicely to get action.
My second cancer wasn’t a recurrence luckily. It was a whole new triple negative primary breast cancer. BOGOF?
You probably got Kadcycla because at surgery they found some live cells still in the tumour they removed so this is a mop up. If you had a complete response to treatment you would just have Herceptin. I got a PCR first time but not the second which is why I am on Capecitabine.
Using a spoon to take the MIL out for coffee this morning.
Love and peace to all
Top

@TopOfTheCliff BOGOF🤣🤣🤣🤣🤣🤣🤣🤣

@Lurkylurks yes, Top is right, this is part of the job description of a cancer patient. I find it very hard to stand up for myself generally, but I found my voice from somewhere during the run up to my very much delayed treatment starting. When you get any letters from the hospital, scour them for useful telephone numbers and write them all down, this way you have more avenues to try when getting answers is difficult. I also make a polite nuisance of myself now, I reason that the staff answering probably find me a real pain, but they're so busy they've soon forgotten as they are onto the next needy patient hassling them.

Hi @TopOfTheCliff and @Fantasea(Your names kind of go together in a pleasing visual image!) Yes, absolutely - that's why it's so frustrating that I got the text ten minutes after their offices closed for the weekend - I really wanted to blow up their phone right away! You would think that the one thing the last year would have taught me is patience but apparently not.

That's a good point @Fantasea. I'm always worried I'm annoying them - it doesn't stop me contacting them if I need to but I worry for ages afterwards when in reality they don't have much time to be annoyed as the tidal wave of patients keeps coming. That's great you found your voice through that experience although I'm sorry your treatment was delayed - that must have been distressing. I am lucky that at least the delays are happening on the other side of treatment

Hope you enjoyed the coffee with mil @TopOfTheCliff

Omg clothes are annoying me lately...one breast has gone that way...the other > that way, so I've been wearing those lacy bralettes from Primarni. Except^ under the slouchy fit vest tops in a 2xs, you can see most of the top of the bra.

I've tried different styles of vest tops, and different undies, and none are bloody right. I bought the smallest bandeau type ones I could find & they just slide down my boobs so my nipples are on show if I bend over 🙈

Maybe I'm just feeling that way out today but it's getting to me a bit now. I've even tried kids bra tops & dd1 suggested kids crop tops but they looked (admittedly still on their hangers) like they'd still not be right. And nowhere seems to have plain kids vest tops actually in a shop that I could try on.

Who bloody knew needing to put weight back on was going to cause so many bloody clothes moans!? It's 3/4 of a stone but clearly it makes a huge difference!

@lucysmam sloggi bralettes are working for me at the moment. Got the latest lot from Amazon. None of my old bras fit right now.

@LemonDrizzle10 thank you, I'll have a look at those now...there must be something out there that will be ok while I put the weight back on!

Hello I’m still in hospital and will be here until at least Monday according to the dr who barely slowed down as she did her rounds - argh I hate weekends in hospital they feel like such a waste of time.

My temperature is normal in the mornings and goes up in the late afternoon/evening so I keep having my hopes dashed that I will be discharged the following day.

The diarrhoea I arrived with is still present though it’s basically bright green liquid (sorry TMI) that mainly likes to flow out of me when I’m asleep. I’ve started eating and that’s making no difference though maybe if they offered something edible I could manage a bit more. The nice overnight nurse decided maybe we should get another stool sample seeing as it’s changed so much since the last one. Sounds like a plan to me though I am concerned they’ll find blood as I’m so burned and sore from the constant diarrhoea and that will kick off a whole new round of investigation. I’m sure there’s some kind of documented ‘cascade’ that I’m falling into. Roll on Monday when my oncologist is back at work and I might get some proper answers.

They do look like they might suit better at the moment, thank you. I'll order one to try.

@Remaker that sounds rubbish- but it does sound like you’re in the right place.
Hope you get good rest tonight and feel a bit better tomorrow 💐

@lucysmam my favourites are the M&S crop tops with matching knickers. I have them in lots of colours. They are really soft and don’t cut in at the sides where I had the lymph nodes removed. I’m gradually chucking out all my wired bras as they hurt me. The BCU has a bra recycling bin for charity.
@Remaker sorry to hear you are stuck in hospital but it does sound as though you need to be there at the moment. Here’s hoping the bowels settle.

Tonight I picked my first ever gherkins in my allotment and a nice courgette. I’ve got gooseberries to make into fool and rhubarb and strawberries. It’s a lovely organic haven with fabulous views. I will take some coffee up there in the morning and have a little picnic. I’m running on 5 to 10 percent energy levels but still plodding on. I hate this chronic exhaustion and what it is doing to my nice life. Grrrr. Roll on October.