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

@FcukBreastCancer isn’t it strange how our perspectives on what we consider good news to be has completely changed? I’m glad you’ve got confirmation of hormone positive, some nice targeted therapies coming your way!! Will blast it.

I had MRI too, bilateral of both breasts with dye, so only covered breasts. Had to pop them into little egg cups and lie on my front. Couldn’t hear a bloody word the woman was saying down the headphones.

fingers crossed for ultrasound and biopsy on other side and for a clear CT for you.

They said they might take some biopsies from my lymph nodes tomorrow so will see how that goes.

when is your CT booked in?

Ultrasound is friday but no date for CT so waiting to hear.
My tumor be 5cm... (hopefully only one of the bloody things. )

@FcukBreastCancer hopefully you’ll get a call tomorrow to book you in, the waiting is the worst so hopefully you get in sharpish. Have you got a designated BCN? If you’ve not heard by tomorrow it might be worth giving them a call and asking them to push because you’ve got enough anxiety going on as it is.

I don’t know why my post has turned bold and I don’t know how I’ve done that!!! Can’t seem to turn it back off 😂.

@cannaecookrisotto Excellent news - I'm really pleased for you 😃

Thanks so much @DanFmDorking. It’s a relief for sure. How are you today? Is it chemo day this Thursday or next? don’t forget those 2 hours at the gym and 10,000 steps ;).

My mums expecting me to be doing 10,000 steps a day but I think I’ll pop my Apple Watch on my cat. That should do the trick!

@TopOfTheCliff
thank you so much for your reply it has really helped. I now realise that I need to contact my cancer nurses.
I saw my breast care nurse in the cancer clinic during my appointment in the hospital where I had my surgery. My radiotherapy is now in a different hospital and I feel disconnected from the breast nurses side of things. They don’t check in, but I suppose it’s up to me to make them aware of my concerns.
I’m trying to do this in my own and I now realise I should reach out for support xx

Unnecessary dilemma and stress!!
i was diagnosed in April, had a lumpectomy on 4th July and have been waiting for the next course of treatment ever since then.
I had an appointment with my oncologist 3 weeks ago who said he didn’t recommend chemo for me as my onco dx score was 15, he wanted me to go straight into radiotherapy. I had to wait a further 3 weeks for a telephone appointment- yesterday 3 weeks later I spoke to Claire a diagnostic radiographer which was an arranged telephone appointment I’d waited 3 weeks for. Claire was acting on behalf of radiotherapy.
She implied that I won’t be starting radiotherapy until well into October.

We originals spoke to Dr C my main oncologist 3 weeks ago , he referred me to radiotherapy - he said to go ahead with a holiday we had planned for 2nd October, I’d arranged with my travel agent to defer the final payment as we didn’t know if I could go. Dr C told me to go ahead with the holiday as there was plenty of time to get my treatment completed and he would put a note on my request.
so we paid the balance on the holiday saying we could go.

Now it looks like I won’t be going, Claire said that my treatment won’t begin until well into October but I can defer my treatment until we get back from holiday in the middle of October.
There’s absolutely no way I’d do that, it’s far too long to leave it after my surgery. I’ve researched it, and it’s over the ideal recommended time of 12 weeks, leaving it but the internet states leaving it longer than 12 weeks may not add a significant risk.

I’m not prepared to take any risks.

I Could do without the additional stress, I know it sounds trivial and the money for the holiday is not as important as my health but I’ve been misinformed and could have easily postponed it if dr C hadn’t said I could go ahead.
I’m not even sure if I’m covered by insurance as the radiologists didn’t say ‘don’t go’.but I know I don’t want to delay any treatment by 2 weeks.
please done judge me badly by this - I don’t look at my holiday in any way as a priority - it’s not.
But this whole situation could have easily been avoided

@LiliJilliBobs have you been referred to Brest Cancer Now for additional support by the hospital? I had someone ring me and they’ve assigned me a “buddy” whose been/going through the same experience as me with same type of cancer and so on. They’re in process of setting it up but it sounds really good. The lady reeled off a list of support services I could get access too, might be worth looking into? The BCN referred me straight after diagnosis and I heard back on Monday this week.

Sorry to hear about the holiday dilemma, how annoying!! Can you speak to the oncologist who told you to go ahead and see if he would be willing to write you a letter saying it’s not recommended to defer treatment to see if that might get insurance to pay out?

Or would the holiday company maybe defer your holiday to a better time if you explained? They might make an exception under the circumstances, it could be worth a go? How many days would you be deferring treatment for should you go on the holiday?

@cannaecookrisotto next Chemo is a week tomorrow - I made myself have a short walk this afternoon - when I got back I was exhausted beyond the thunderdome - that's how it is.

Glad to hear you got out @DanFmDorkingand may your energy start replenishing over the next couple of days before the circle begins again next Thursday.

I’m going to miss eating takeaways and sugar, it’s obviously a small price to pay to give me any kind of advantage over the lumpy bastard, but that morning coffee with two big sugars will be sorely missed.

I’ve got different family members who are all suddenly cancer nutritionists and dieticians telling me what I should and shouldn’t eat. One says use sweeteners, another says use a teaspoon of honey in morning brew as artificial sugar is bad, another is telling me to water fast, and my favourite is the crazy uncle telling me I’ve got parasites and ivermectin and Mebendazole will cure me.

I think I’m going to just eat as healthy as possible, no processed foods and treat myself every now and again to a bit of something naughty like a coffee with real sugar 😂.

Is there anything that I really should avoid like the plague? Or foods that you guys have found don’t agree with chemo? Or foods that you felt made chemo a bit less shit overall?

@FcukBreastCancerdid you hear anything about your CT today?

@ForestFlowerFairy did you get the form completed? Fingers crossed for your claim to go through super quick so you can treat yourself to the throne of comfy luxury!

No news today. Thank you for thinking of me @cannaecookrisotto

Will ring nurse tomorrow

Make sure you do, that’s what they’re there for ❤️. I swear they must see my number flash up on their phone now and their eyes must roll into the back of their heads 👀. Nothing wrong with giving them a wee nudge xx

@cannaecookrisotto I have to admit I can't stand all that nutribollocks stuff (a Liz O'Riordan phrase, I bloody love her). Eat what you feel like eating.

I totally lost my appetite during chemo, the dietician was thrilled one day to see me eating a Yum Yum 😂 I lost loads of weight, the last thing I needed was someone bimbling along and telling me I needed to have kale smoothies 🤢🤢

@BatshitCrazyWoman this makes me feel vindicated!! I think if I have to sit eating broccoli and kale for the next year of my life I’ll lose my mind.

Plus, I’ve gone from 70kg to 59kg, surely I need to fatten up a wee bit so I’m a bit sturdier for chemo?

All I’m hearing from people is “cancer loves sugar” and all I want to do is sit in bed and eat a bag of strawberry laces 😂

That sugar feeds cancer thing isn't true. The irony is I was slim, ate really well, exercised and barely drank - I still got cancer! People love to have all sorts of opinions about what you should be doing/eating/thinking ("stay positive"). I ignored them all! Chemo and a lumpectomy saved my life, how I got through that was my choice.

Just carry on eating as normal @cannaecookrisotto and I hope it all goes well for you.

I agree completely about diet, there are so many conflicting theories.
not sure we can eat anything at all!!

I'm also eating whatever I feel like, but I can tell when I've had a day of junk food (or Chinese) because of my feeding tube, it's clear and needs an extra syringe to wash through so you can't see floaty bits 🤢

At this stage I figure I just do whatever I need to get through but I am very much looking forward to starting treatment next week. As it's every week day for 6 weeks and we have no family nearby I have a different person coming to stay each week and give me lifts.
I'm usually too tired after work to cook, so DH is cooking...or should I say warming food up. I'm seriously hoping family members will have one night of his brown warmed up children's food and take on the cooking role as well as taxi 🤣

And yes @cannaecookrisotto I'm pleased to say the NHS app shows the form has been completed, so now I'm stalking the insurance companies tracker but it isn't showing on there yet.

Did you guys find spicy foods were a no no? I love a good curry.

Glad your forms been completed!!!

had mammo today, markers inserted and lymph node biopsy this morning. Worst bit was the local anaesthetic going into the armpit, all else was fine.

I think food is a very personal thing - i know someone who ate lots of curry during chemo as it was the only thing she felt she could taste properly. I couldn't eat spicy food at all, as I got raging oral thrush with my chemo so it was too sore to eat spice. I lived on bland pasta and custard (but not in the same bowl !).

Something to keep in mind - i read somewhere to be careful about eating/drinking your favourite things when you're having chemo. They can become associated with how you feel during chemo and you'll have ruined them for yourself. For this reason, I stayed off the wine🍷 during chemo...

Edited for a crucial typo!

@Poledra will be interesting to see what I can and can’t eat. Good info about avoiding my favourite things so I don’t associate it with feeling like shite.

I bloody love custard. Can just eat it on its own so if I need to live on that I’ll cope.

Sorry to keep asking questions, what about snacking during the chemo itself? I’ve also read that sucking ice can help with mouth ulcers, is there any truth to that?

I ate what I wanted through chemo. However, as my sense of taste was affected and I had a slimy chemo mouth, I tended to want marmite on toast or other umami type things. You’ll know what you crave at the time. I made sure I ate a couple of dates a day (yum!) and when on strong anti sickness drugs also added figs and prunes - I didn’t need laxatives for this reason!!

One reason to avoid fave foods around chemo time is if you’re sick. There’s nothing worse than reverse engineering a favourite snack as it’s not something you might want to eat again for a while!

Glad your biopsy was OK. You are tough!
I'm possibly getting stabbed again tomorrow in other armpit as have ultrasound. Still no news on CT but will chase up when I'm there.
Left a message with my nurse, who left me a message saying see you tomorrow. Consultant had said there was one CT slot reserved for urgent cases on Fridays, but probably I didnt get it.
Back is killing today, headache back. I need that CT to put my mind at ease!

@FcukBreastCanceri’m not feeling tough now the local has worn off, I’m in a right grump. My 5 month old is like a bowling ball (in age 9-12 month clothes) so hefting her around is a challenge!!

definitely chase up that CT, I feel like ringing them on your behalf and asking wtf they’re playing at.

my lymph nodes looked a bit suss today on US so m they did biopsy. Radiologist said that they can remove my lymph nodes, but because I’m TN I’m having chemo first. I’ve got appt with Oncologist on Monday so I have a notebook filled with questions, that I don’t want to particularly know the answers to but should probably ask. I’m taking my DM and DH with me but I don’t know how I feel asking the questions in front of them, some of them will sound quite stark and I don’t want to add to their worry.

My back has been absolutely crippling me for a few months, so naturally when I got my diagnosis I was imagining the back pain was due to mets. My cancer is 10cm, they put the clip in today. I’m slowly bringing my head out of the sand in terms of reading the (safe) websites about triple negative, treatments and prognosis.

Good luck for your armpit stabby tomorrow, I find talking a stream of bollocks to the nurses and closing my eyes really helps.

@dancingwhilstfacingthemusicI love marmite so I hope that’s a craving! I love eggs too, in any form.

I’ve bought myself a little notebook to keep track of symptoms and all these little things. I’m going to make a list of favourite snacks to avoid too.

@cannaecookrisotto a notebook is a good idea. I kept a diary throughout treatment and it helped me track good and not so fab days to see a pattern. Looking back on it almost a year on from my third op (mastectomy) just before chemo is helping me to grapple with these weird post- treatment times.

I hope you soon get seen @FcukBreastCancer

@cannaecookrisotto absolutely yes to ice on a sore mouth - I sucked on ice poles and one of my DDs dug out the old ice lolly moulds from when they were little, and made me ice lollies with fruit juice. Even water can taste strange with chemo so this helped me keep up my intake of liquids.