Breast cancer

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Secondaries - Advice please

jmp
Posted by

The addition of a cat ....>^••^<  xxxx

jmp
Posted by

Or even more :-)

Weeblemum
Posted by

Hi Judith!

I'm sure I replied to your post on another thread, but not sure which one! 

If you want to know anything about oral Capectiabine treatment, just ask as I've been on it since June (well, having a short break at the mo due to side effects, hopefully back on it next week!) 

Best wishes

Cathy

PS The Mona Lisa picture could be me - mad cat lady! 

Best wishes

Cathy

x

jmp
Posted by

Hi Everyone,

I can‘t sleep!  Probably worried about oral chemo starting next Wed. I wonder if I should have flu vaccine? I have sent an email to my breast care nurse ( secondary) and copied in my GP‘s.

On a different theme entirely who makes you laugh or smile? For me it’s Graham Norton every time. Judith xx

BryonyO
Posted by

Hi Judith 

Seems perfectly reasonable that you are awake. Changes to meds are always concerning but whatever happen you’ll deal with it, but it’s just the unknown. 


Graham Norton makes me laugh too. Other co Edison’s I enjoy? Jason Byrne, Sarah Millican, Miranda Hart. 


I’m awake because my partner’s woken in pain. I’ve given her a second dose of her breakthrough pain killer and I think that’s helped. She’ll fall asleep and I’ll be wide awake. Hey ho. I thought I’d reply as I saw you were awake now, though you may not see it. 

Bryony 

If you look hard enough, there’s something positive in every day.  

Weeblemum
Posted by

Hi Judith

My oncology dept was quite keen on me having the flu jab, but they suggested that it was done in the time when I wasn't taking the Cape. Now you're so close , it might be worth waiting until after Day 14 when you have a week off rather than just a couple of days before you start. Mind you, I think all onco departments are different though, so definitely worth checking!!

Best wishes

Cathy

x

jmp
Posted by

Hi Bryony,

Thank you for your reply xxx My sleep is all over the place at present. I start Chemo on Wed : pre Chemo info, Chemo & Biopsy result all same day.  

Hope that I will be more grounded after that. 

I am sorry that your partner has extreme pain, and hope that the medication can help lessen it. 

Judith xxxxx

jmp
Posted by

Hi Cathy,

Thank you for your reply :-) I’m a bit irritated by my breast care nurse  ( whom

I met on secondary diagnosis day 4/01 ) lack of info and contact. She took my weight and height ( pre Chemo) and provided the Cape leaflet + one on secondary bc which looked depressing so not read. 

She was lovely on the day and said I didn’t look my age ( 61 Feb 16th) and said she’s 55 yrs  and needs to lose a stone in weight. My BMI is too high I know but difficult when I feel depressed especially now !

She knows I have no family at all, parents passed on, no bros/sis, children though me ex has been there for me. Which I’m really grateful for as he had his own health issues too. 

My work in London has allowed me two months off and I’m part of UNISON, but I have another 6 yrs before I can retire. God I wish I’d bought property in the 1980’s hind sight is a great thing!!

Since 04/01 then I have sent her 4 emails asking various questions which she’s not answered properly. 

Just a random email from her that it must be so “ overwhelming for you to receive all these appointments in the post “ ( actually, no it isn’t). 

Also  said “continue taking Magnesium Citrate ( when I told her via email that I didn’t currently take it and what did she think of me starting it to aid sleep and everything else it is supposed to be good for? 

I rang her last week to ask if she had received my emails and she said yes and that I should speak to my GP about Vit Supplements. Why not say that in a reply then? She did not like it when I said that.

I am trying to be more patient as she may have an enormous, stressful workload? (I would have thought that she might have asked me if I’ve had the flu vaccine prior to Chemo.?).

This is a bit of a RANT I know but that’s how I feel at present. I have had more support so far from the GP’s surgery. Judith xxxxx

Weeblemum
Posted by

Rant away!I know what you mean Judith!

Last time around, most of the breast nurses on the team were on sick leave, so it was REALLY difficult to get hold of one at all! They weren't present at oncology appointments at all. Luckily, I have a wonderful GP, so I tended to go to them or the chemo nurses (once I'd started) for any advice etc. 

This time, when they were originally looking at lung cancer instead of secondary breast, the lung cancer nurses were fantastic - very knowledgeable and rang me a couple of times to see if I was okay. Unfortunately, I was passed back to the breast nurses once the diagnosis was made. This time, my breast care nurse has been at some of the oncology appointments, but the team aren't based at the hospital where many people have their treatment so they aren't always around. 

I must admit, I don't bother to contact them with any queries as they are always slow to get back - I think they probably do have massive caseloads, but you always seem to speak to someone different so it's difficult to feel that you are getting to know anyone and that they know you. I tend to use my GP as I have her email address. 

Good that your work has given you time off to at least begin the treatment. I'm on long term sick leave (I work for the NHS) but am going for early retirement on medical grounds as I work with children and the oncologist is not happy about being around bugs all the time. My chest symptoms at their worst also make it difficult for me to function well at my job (I'm a speech and language therapist so constantly talking!) and the fatigue is sometimes severe and variable! I've given 31 years to the NHS and was working 11+ hour days to cover the caseload before I went off sick, so I just want to spend the next few years (or however long!) doing things that I enjoy... 

Where are you based - do you live in London?

Best wishes

Cathy

x

Best wishes

Cathy

x

jmp
Posted by

Hi Cathy,

I live in Brighton and was commuting 4 days per week 1:05 hrs each way to work in N London. I work for a local authority and am part of UNISON. I don’t know if I can afford to take retirement on medical grounds will need to look into it. 

As my secondary is in an unusual position according to Oncologist ( near heart) and possibly due to radiation damage, not sure if that will include other nurses other than Chemo? 

My secondary breast care nurse provided her work contact card with mobile and email address. She is not based at one site either. 

I have lived in London for most of my adult life and moved to Brighton when diagnosed in 2013, relationship broke down, and got tired of being surrounded by 8 million people :-). xxx