CAROLINE SHARES HER STORY WITH US AS PART OF BREAST CANCER AWARENESS MONTH
At what age were you diagnosed? I am sure that the day is firmly etched on your brain - can you talk us through the first 10 minutes after hearing the news?
I was diagnosed at 49, on Feb 17th 2017! The first ten minutes were like being hit by a lorry! I was going to go on my own to get the results, luckily a friend came with me, in the room was the oncologist and a wonderful Macmillan nurse who I didn’t know would become my confidence through my whole treatment. The oncologist words were ‘we have found cancer cells in your left breast’ my response was ‘fuck fuck fuck’ does that mean I have breast cancer?!
I then said how am I going to tell my sister and my loved ones?!
How was your cancer detected? Did you experience changes in your breasts or was it a routine check that brought about the diagnosis?
I found a lump in my breast in the December of 2016, next to my left nipple, whilst having a bath, I always checked my boobies regularly, due to having fairly lumpy boobs, this particular lump felt different as it was also itchy, a very strange sensation, as in when I scratched it, it didn’t go away. I was going away before Christmas and then we obviously had Christmas, then in the mid to late January I went to my GP she was great and said she didn’t think it was anything but she will send me for a mammogram anyway as I was nearly 50! You have a two week window from the GP recommending you to have a mammogram to when you have the mammogram - it’s very quick. Whilst having the mammogram, I also had an ultrasound and biopsy (this isn’t normal, they had obviously seen something) I was told within 10 days it was cancer.
How soon after your diagnosis did you share the news with your family and friends?
A handful of best friends were told within hours and my sister was told the next day, which was horrendous! I couldn’t bare seeing the pain in her eyes, she's 10yrs younger than me and we are very close. I played it down and said I’ve just got some cancer cells that they are going to cut out.
What treatment did you receive and over how long?
I had a lumpectomy and three lymph nodes removed within 3 weeks, I went back for the results with 4 of my friends where they found two more smaller lumps and pre cancer cells. My surgeon said I needed a mastectomy, I said if I have one off I want them both off, nothing to do with aesthetics all to do with being terrified it can come back in the other one! He was very reluctant as it was a ‘healthy’ boob, I said I didn’t care I wanted them both off! Then 7 weeks later I was allowed to have a double mastectomy and reconstruction all in the same operation, for me this was the easy part......
What side effects did you endure? Can you talk us through any coping strategies you put in place?
Thankfully I didn’t need chemo or radiotherapy, they had removed all the cancer from the mastectomy!
I had hideous side effects, terrible PTSD, panic attacks, couldn’t sleep, the post cancer drugs making all my joints ache terribly, struggling to move, struggling to get up in the morning, chronic fatigue. I also got nerve damage from the knee down with accelerated osteoarthritis from the post cancer drugs! I was struggling massively and being a fitness instructor and living on my own this was killing me. I went onto venlafaxin, which is an antidepressant, which helped with my anxiety and sweats but my body was so painful everyday.
After 18 months I went to see my oncologist for the second time after already changing my drugs after the first six month from anastrozole to tamoxifen. I said "I cannot do this anymore, I need help!" He put all my stats into a research programme that one of the universities had carried out for 100 women of my age and my cancer, over a 10yr period, and only 8% benefitted from being on tamoxifen. So, he said he would trial me off it for 6 weeks as it takes that length of time to come out of the system, I cried as I was so happy that I could come off it, that made me feel better in itself!
When I went back after six weeks and said I didn't want to go back on it, because it is a very low percentage to be in pain for the next eight and a half years, he gave me the ok! I had to have a lot of therapy, I had hypnotherapy, EMDR, counselling and exercise!
Where did you get your strength from?
My strength came from knowing my mum wouldn’t want me to give up, she fought to keep me in this world when I was a baby and young child as a single mum. Strength also came from my sister, my nephews, my amazing friends and my godchildren, I have so much to live for!
I want to be the embarrassing auntie/godmum at their weddings singing badly on the dance floor! I’m always a glass half full person as well which helps, I always look at what I have got not what I haven’t and, to be honest, I’m glad It was me that had the cancer, I’m not sure I could have coped with my sister or any of my loved ones having it?!
What was your biggest personal challenge throughout your treatment?
Feeling shit and anxious all the time and ‘trying’ to be positive for everyone around me! I hated seeing their faces when I was at another appointment listening and hearing what I had to go through next - it broke my heart!
I also always wear fake tan and red lipstick so hid it well!
Did you have a support network around you?
I had the most AMAZING support network around me! I was literally scooped up and looked after from all angles and I cannot thank them enough and never will be able to!
What kind of things did you do to distract you during your treatment - both in hospital and at home?
Laughter...and lots of it! Trying to exercise as much as my body would let me, going for coffee, eating out, being with my family, being with my nephews, my godaughters and my closest friends who were all there for me! Just not being on my own.
How did your appearance change during treatment?
My hair started thinning, I gained a lot of weight, I aged years, had a lot of problems and still do with my tummy (digestive system).
As a friend or family member of a Breast Cancer sufferer - what is the no.1 most important thing that they can do for you?
Just be there in whatever way shape or form! Even if you say you don’t need anything, you do really, even if it’s a hug or a phone call or a text, it doesn’t have to be anything big!
Finally - what is the no.1 thing that they should NOT do or say?
Oh sorry I can’t come to an appointment as I’ve got a hygienist appointment’ which yes one ‘ex friend’ did!