My SBC Journey - Helen - Make 2nds Count

SBC & Me

When were you diagnosed with SBC?

I was diagnosed with SBC on 16th March 2020

How were you diagnosed with SBC?

I found a lump in Dec 2019 while on holiday. In January, after a mammogram and ultrasound, biopsies showed that it was breast cancer. But as the underarm ultrasound was clear, I was told it was stage2. I had a left mastectomy in February and then CT and MRI scans before I started my chemo. The day before my chemo started, I saw the oncologist who told me quite bluntly that surprisingly I had shown nodules in my lung and also mets in my spine , sorry but I was now on palliative care. (Not a lot of bedside manners!). The spinal mets explained the horrendous sciatica that I had had the week before. I went straight from that appointment to get my PICC fitted...I was a wreck, the poor nurse thought she was hurting me, but I was just so upset.

I have a faulty BRaCA2 gene, my sister was diagnosed 6 weeks before me and we had some of our chemos on the same days, in different hospitals. My mum, granny and great granny also had breast cancer

What has been your treatment Journey?

Left mastectomy

6 x EC chemo ????????????????????????

Now I am on Letrozole, Palbocicclib and denosumab.

And on 25th May I am having a right mastectomy for symmetry and am actually excited about it!

What would have helped make your journey so far easier?

I cannot fault the treatment I have had and the care of the medical team at my hospital (Clatterbridge on Wirral). But the way I was told that I was on palliative treatment wasn't particularly helpful. I thought that he meant that I wasn't going to get any treatment and would be dead in months. Even though I soon learned otherwise, I felt that things could have been explained to me better. Also I read that some people have a Secondary Breast Care Nurse, that would be nice too. It was hard during 2020 to have all my appointments on my own too, and also to still have all my oncologist appointments over the phone.

What advice would you give someone who has just received their diagnosis?

Don't google straight away. And don't panic. I was determined to stay away from the statistics as I didn't want to scare myself. However recently I have started to do a bit of research and realised that googling isn't necessarily the best way. Support groups (such as this) are a better source of information.
Also, although the phrase 'take one say at a time' is much quoted, I honestly think it is so true. Today I feel OK, so I do normal things and put cancer to the back of my mind.
There are lots of places for support, Maggies Centres, Holistic Centres, support groups. Find out what kind of support you would like, and use it. I have had acupuncture, relaxation help, counselling and help to fill in disability forms.

What is your favourite holiday destination?

Scotland. Particularly the Islands. Arran, mull, Iona, Barra, Lewis & Harris. I grew up in Ayr and my bedroom window looked out at Arran. We have just bought a bigger campervan today!) and are looking forward to some fun trips. And also visiting The Netherlands where one of our 5 children lives.

Do you have any great TV/film recommendations?

I am rubbish at watching a film all the way through..

I like Bake Off and Sewing Bee, and sigh constantly when my husband watches reruns of Midsomer Murders, Endeavour, Lewis.... I have found that I can't watch anything upsetting any more, nor anything medical!

Favourite books?

I love reading and have just also discovered Audible books so that I can listen to my book on my waterproof headphones in the swimming pool!

I would recommend anything by Matt Haig, the Time Traveller's Wife still makes me cry, and I like Anita Shreve, Tracy Chevalier, Kate Attkinson