Hi Zoesam,

It sounds as if you have been most unfortunate to start your cancer journey at such a young age. That you are still here 20 years on is good, but you now have another difficult challenge. I expect that this has knocked you for six and it’s no wonder your mind is all over the place.

I too have had experience of bullying and coercion whilst under treatment for breast cancer. It is so difficult when you haven’t got any faith in your care team. Would you consider moving to another surgeon at this late stage? I can fully understand if you want to go ahead with the surgeon you have so that you don’t delay treatment any further. I have now changed to another surgeon in a different hospital and what a difference that has made!

It is more difficult for you if you are working in the NHS - you probably have too much knowledge to take this lying down. I am in one of the professions supplementary to medicine, so am in a similar position. At one stage the oncologist wanted me to have radiotherapy. At that time I had a large lump in my other breast, but my surgeon told me that it was nothing and refused to do any tests for it.

I refused radiotherapy on the basis that there was no point in treating one breast whilst ignoring the other. My oncologist tried to section me on my first visit to her because I told her that life wasn’t worth living as I had the previous week. She immediately turned to my husband and told him that she had heard me threatening to commit suicide and was duty bound to call the in house psychiatrist. We both strongly denied this. I explained that I was complaining of my quality of life. The previous week I had buried my best friend who died of bowel cancer and on all four other weekdays I had attended hospitals for various treatments. It took us quite some time to talk her down, but I found that appointment quite terrifying.

After 11 months of a Mexican stand-off I was referred to another surgeon, who immediately found the lump in my other breast. He offered to take over my care and, what a difference that has made! He sent me to see two researchers in radiotherapy. I got completely different advice from them both, which was of no help at all. I later got a second primary cancer in the original breast and had a double mastectomy followed by hormone therapy. I changed from Tamoxifen to Letrozole, as the Tamoxifen obviously hadn’t worked.

You feel so dejected and low when you are suffering pain. Is there nothing that could prove more effective in keeping the pain at bay? Have you consulted with your doctor about the alternative therapies which you are taking? I had to stop some of mine because I was told that they reacted badly with my allopathic medication. If you haven’t already done so it might be worth asking.

I hope that the chemo goes well and that you become more accepting of it once you start your treatment. How many sessions do you expect to have and when do you hope to have your surgery?

Will be thinking of you and praying for the best possible outcome.

Kind regards,

Jolamine xx

Thank you for your kind thoughts Jolamine,

I have written a reply once and then pressed the wrong button!

My gp has been fabulous and helped with my pain. I start chemo on Tuesday and I'm having 2 rounds of infusions and oral at home then being rescanned as nothing has been checked since my diagnosis.  At the moment I can continue with my supplements as they don't interfere with the drugs.  With regards to my breast surgery it's a waiting game until i'm "cured".

I hope you are doing well on your journey and looking after yourself,

I know I have forgotten lots to reply but my brain is tired and needs some food!

Lots of positive vibes and prayers to you,

Zoesam

Hi Zoesam,

 I have done that so many times and it is infuriating. I now write all my contributions in word where I can retrieve them and then I paste them in to the reply box.

I am glad to hear that your GP has been so helpful. Fortunately it’s not long to wait until Tuesday, although I suspect that it still seems like forever to you.

I am glad to hear that you can continue with your supplements – much better than doping yourself up with allopathic medicine.

I thought that you would leave the breast meanwhile. You’ve got too much going on already. I hope that it won’t be too long until you are cured and you can face your final hurdle.

I shall be thinking of you on Tuesday and hope that the chemo manages to control the growth. I can fully appreciate the frequent crying and mood changes and how this impinges on the family too. I hope that they can be patient and understanding to you. I am sorry to hear that your pain is worse after you have cried, as crying is a great stress buster at times like these.

Stay strong.

Jolamine xx