What Should I Be Doing/Thinking/Feeling - Have NO Idea.

I am off to see the Oncologist tomorrow nothing to worry about final chat before he signs me back over to the surgical team (again this is their standard procedure).

This might sound so, so silly but all in all, I am not, do not think about my cancer (I am just getting on with things) I have NO idea if I should be checking anything, yes I know the letrozole makes me feel rough at times, and I am losing the extra weight this drug has helped me put on.
I have had NO contact from my GP through any of my treatments basically it seems to be all down to me and something inside me has rebelled/closed ranks - should I be worried.
I read on here what good support some of you ladies have had from your GP we are still on the ‘get past the receptionist malarky’ then the doc will ring if they see fit.

My last letter from the Oncologist (copy to GP) recommended Vit D tabs, the letter even said (help needed from GP with this matter) nothing that was weeks ago I did ring GP to inquire, was told it was down to the Oncologist?

Anyway, here I am one year down the line since chemo, surgery, and rads - getting on with life and not a clue what I should or should not be feeling/doing/thinking.

Does anyone else feel like this?

Poppy xx

Hi poppy,

I understand how you feel, just a shame you don’t have very good doctors as they should be getting you checked and sorted out with you having cancer surgery etc.

mention all of what bothers you to your Oncologist and make sure they listen as this is about you getting to feeling normal not wondering what’s next,  if your not getting on with your Letrozole  talk to the doctor and ask them to change it, I did as it didn’t agree with me so now I’m on anastrozole and I feel loads better.

your energy levels will be low so rest up as much as you can listen and feel what your body wants to do, and yes do take the high strength vitamin D3 which is for your bone strength etc, I’ve been taking it for years.

Ask yourself this do you feel depressed, not in the zone like spaced out a bit, well if so you will need to tell your doctor and make sure they listen to you,I know some doctors just want you in and out with their being so many patient’s and most of them are elderly and just go for a chat lol yes this dose happen  so like I said make sure they listen to what you have to say.

you also need to keep checking your breasts now and agin to see if any changes have occurred etc, but I have been told it can take up to 2/3 years before you start feeling yourself, so rest, listen to your body, don’t go doing to much, also their is always someone you can phone on here to chat to a Nurse so don’t forget there is always a listening ear, you are a strong woman that has been through the mill now it’s time to think you.

take care of yourself my lovely

CATT57 xx

Hi Poppy

I’m sorry you find yourself in this situation. It happened to me too. The moment my GP practice referred me, they wanted nothing more to do with me. I suffer from lifelong anxiety and phobias, yet it didn’t occur to them I might need additional support. I met with ‘any woman would feel anxious’ and, from another, ‘I have no knowledge of chemotherapy side effects’. They just left me to the hospital. Fortunately I had an excellent oncology team, business-like but always responding to whatever I said.

Like you, I felt isolated and abandoned once treatment finished. I suffered side effects which my GP wanted nothing to do with even though a rheumatologist said my GP needed to do x, y and z and I had to rely on an optician during lockdown to suggest I needed a referral to ophthalmology for an unusual eye problem which turned out, unfortunately to be my secondary cancer. My GP, when I got a face to face appointment, hadn’t examined it, just peered from her 2metre safety zone and suggested it might be dermatitis!

There is an excellent article that is spot on in looking at this strange period of transition. A nurse posted it on one of the forums and I kept the link. It really is worth reading.

Ask about what you should now be looking for. It may just be checking your scar for lumps and bumps but it may be checking for anything. The spot I had at the top of my spine that wouldn’t go away turned out to be a skin lesion, part of the secondary cancer. This isn’t to scare you but encourage you to pay attention to your body just in case. Most women with breast cancer are cured permanently!

Here’s the article. Hope it reassures you

workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

@catt57  
@Jaybro  

Thank you so much for your kind and informational replies.
I will speak to the Oncolgist about all of this tomorrow - when I first met him before the start of chemo he was lovely, he told me that any problems contact my GP if I cannot get hold of him and my GP which get in touch via email (we are all connected up together he said) he might think they are but my GP obviously does not adhere to this or does not know about it.

I suffer from MH problems on meds for borderline which I have learned to deal with (seems to be the story of my life) my GP knows I live alone and what I was facing but nothing, does not give you confidence does it.
I do look at my breast and do as told about my arm regarding lymphedema and if any unusual pain occurred I would seek advice but that is all.
I am ok on the letrozole, changed to nighttime taking and that has helped also losing some of the weight I gained trying so hard to keep positive and on top of it all - would be so easy though to just cave in especially with no real support.

Going to ask the oncologist about vit D
Phew, and there was me thinking Cancer would be the problem not trying to get help and support.

Thank you both again and thanks for the link onto it.

Poppy xx