Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Oh! Our previous teacher told us it was & tbh, I couldn't be arsed to look any further into it...I shall do now rather than take her word for it. Probably should have done in the first place 🙈

@lucysmam

I've just been thinking about it, and wouldn't it maybe be more comfortable for you to be at home for phone calls from the hospital?

Maybe you should take the morning off (or afternoon, or day depending on the time of the phone appointment)?

I'm just thinking about your right to privacy, and also your feelings when dealing with calls like that. I don't know about you, but I find these oncology calls rather stressful and I make sure I'm at home. Sorry, just thinking it all through! I'm absolutely not trying to tell you what to do xxx

I leave work around 1pm @SummerCycling , hence my request for mid-afternoon. Even though I'm only ten mins ish away, I'll definitely be home by then (or my best friend's house - I would be ok taking a call there too).

@lucysmam

That sounds much less stressful, if the hospital can phone in the afternoon. I wonder why the registrar reacted like she did when you requested an afternoon call. In any case, fingers crossed they can do that!

I'd guess most folks "take what they get"? I'm just conscious that it's my first week back & I don't want to take the mick waiting for a 10am (for example) phone call that comes half way through dinner time when I would be expected in at some point before the end of my working day iyswim?

@ClashCityRocker fabulous news, I'm so happy for you!

@lucysmam I ask for every following telephone appointment to be as early in the morning as possible. The longer I have to wait, the more anxious I feel so by the afternoon I'm swallowing down the sick and I'd rather avoid that if I can. A few times, a nurse/doctor has expressed surprise that I should ask but I think it's reasonable, even if they can't then accommodate my request. Sadly, I think it's another example of the cancer patient having to be 'grateful' for whatever they can get. I also have low sodium and was told it was because I drink a lot. However, I was also told to drink 'plenty' of water on these chemo tablets to try and avoid UTIs.

@lucysmam I am a primary headteacher and currently being treated for breast cancer. It is not unreasonable in these circumstances for you to have your phone on vibrate in your pocket and for another member of staff to be on call to cover you and maintain ratios. You can also request the time off to take the appointment at home. I would be more than happy to cover you myself if you worked in my school.

@ClashCityRocker that's fantastic news

Thank you all for your kind words. I really wasn't expecting it at this point. I still feel kinda shell shocked. Taking today off work to get my head around it and going for a nice meal tonight.

On the low sodium thing, I thought it was drinking too much that messed with that...

I know when I was going through radio and was drinking tons (as well as the 3 litres of saline I got with chemo - to protect the kidneys apparently) I had to take electrolytes as my sodium,, potassium and magnesium were on the low side due to this.

I phoned secretary, there's a CT results backlog. They're not even going to chase until this time next week.
At least I'm not sat staring at my phone expecting it to ring now!

Unex I phoned the CT people myself when it same boat, think it was just the appointments number, which just gets the receptionist but they can put you through or pass a message on. Results then out to team that afternoon. Just did the I have stage 3 cancer and kids and worried got stage 4 please help I know you are superbusy approach.

Thanks @Silkiebunny
Might be a good idea
Once they've got the results, they've then got to have a meeting apparently
Coz why not!

I just called the breast care team about my bone scan. It turns out the machine broke down 4 weeks ago so they are sending “urgent urgent” cases to Plymouth and pre op injection patients to Exeter on their day of surgery ( to drive up and back on the morning of their operation!) I fall into the “urgent” category so nothing is happening for me. Nice to understand why I’ve waited two months already but no prospect of a date for a while. Interestingly when I rang the nurses I got a bit tearful. I hadn’t realised it was upsetting me.
In the news this week is the opening of the new radiotherapy CT scanner unit. Shame they can’t fix the other machine though.

Crikey @TopOfTheCliff that's rubbish!
Can you be moved to "urgent urgent "?

@TopOfTheCliff that must be so frustrating- and the lack of communication is awful. No wonder you got upset.
I may have missed this- but does anyone on here have any experience of Abemaciclib? Friend has been offered this after v tough time on chemo/ radio. Any thoughts welcome.

Sorry they can't do your bone scan soon Top but glad treatment is nearly over for you.

Sandwich I was offered that drug, had a very tough time with chemo and steroids and DS had just been taken as an inpatient and there's a lot of cases having really bad stomachs for ages when start so I turned it down so could see DS. Another woman offered it at the same time claimed it was a no brainer not to take it and she had no concerns about that. I saw her then post a couple of months later she had stopped it due to that. I think Dotty on here is on it and been OK for her. My concern was also 3 to 5 hours exercise a weeks cuts reoccurrence risk 50% if I had a bad stomach that would not be possible and it cuts risk by a third someone said but the data looked unclear to me. My oncologist did not seem very bothered about it but I was just in 1 lymph node so a marginal case for taking. I was told would be far less benefit that chemo was and that was 6% over 10 years for me. I think LucysMam may have started too. One thing she could always do is try and see. There are some FB groups with lots on it.

@TopOfTheCliff that's dreadful to have to be left waiting that long. I can see why you would be upset. These long waits take a real mental toll on top of the physical risk. It sounds like all will be fine in your case (you mentioned it has been better following physio) but they can't know that! It is shocking really. Hopefully they can upgrade you to 'urgent urgent' (what categories has it come to?!).

@TopOfTheCliff Two months is ridiculous and obviously unacceptable in such a wealthy country, but what can you do? 😭is there a private scanner within a reasonable distance, or maybe that isn't such a great idea for a bone scan?

@Silkiebunny Could I ask you about the 3-5 hours of exercise & 50% risk reduction of recurrence: is that specific to your type of BC, or would it also apply to Her2+++ ER-0, PR-0 BC? I'm asking because I was advised to do at least 150 mins moderate exercise per week, but that is less and I'd really like to know if it needs to be more. (That 150 min advice was generic, given to our mixed group of people with different cancers, so not only BC and I'm wondering if it varies).

I'm so weak and unfit in comparison to before treatment, but am keen to get stronger - more a topic for The Great Recovery thread though! I'd love to know the minimum I need to do each week and try to make sure I do it. I'm going to join a different gym, one with a swimming pool and squash courts; my old gym was so nice, but much smaller and limited in choice of sports.

As far as I know Summer its generic cancer advice, maybe breast cancer though would imagine applies more widely as well, based on research but it was a while back I saw it and can't remember where. I think its 3 to 5 hours a week of moderate intensity exercise. Just had a quick google and this came up:

https://blog.dana-farber.org/insight/2018/02/can-exercise-reduce-risk-cancer-recurrence/

I find it good for mental health and physical health to do within that range. I keep a record of how much I've done, add the minutes each time and calculate and average.

When you are just starting Summer if 3 hours is too much just do whatever you can and build up as you go. I do 4 hours a week now, average for 2023 to date but in my treatment year (2022) it was just under 2 hours a week, treatment finished in the August. Any exercise is better than none.

I found I was overdoing it last time after treatment ended doing two activities each day. I was so stiff and sore I had to cut back. I am an Audax cyclist so we go out for about five hours twice or three times a week on our bikes. This easily hits the target. I just need to get fit enough to resume my cycling! I think swimming and gymming will do it for me. And some weight training

Thanks @Silkiebunny much appreciated

Sandwich They also told me you could start that drug up to 12 weeks from radio end if that would help give a break. I would discuss with oncologist though can be a balance between quantity and quality of life.

@thesandwich , yes I’m on Abemaciclib. Not finding it too bad. I’m a bit more tired, I think, and sometimes a little light headed but nothing major. I have the occasional bout of mild diarrhoea bit nothing that gets in the way of normal life. I’m very high risk though, and ER+ but not strongly which could mean hormone treatment may be less effective on its own. So I’m keen to throw everything at it.