I’m 48 years old this year, just a year younger than my mum was, when she died from breastcancer.. I think when I get to 49, I will hopefully put this whole cancer thing behind me..
I’m a mum of 2 boys, well young men, Steven aged 26 and Paul aged 22. I’m married to Andrew, and we have been married 27 years this year… I am also a nan to a leah 9 months, she’s my world..
Here’s my Cancer/Brca journey..
It was News year Day, we had just got the news that my Grandad had died, he had pancreatic cancer.. He went into hospital and never came home again.. It was too late, it was inoperable, and he was too poorly for any treatment. We were all devastated..
That was the start of the horrendous time we as a family, were going to have because of cancer..” if only we’d known then what we know now.”.
It was my mums 44th birthday, I’ll never forget it, she told me she’d found a lump in her breast, I asked her how long had it been there, she said, it had been there a while, but with my Grandad being poorly, and then dying, she had been scared to tell anyone… I made her an appointment at the doctors, she was seen fairly quickly. The doctor referred her to the hospital for a mammagram.. It was Cancer, and so the nightmare began.. Mum had a lumpectomy, and radiotherapy.. She seemed to do well for a while.. Then another lump appeared, this time she had a mastectomy.. It was grade 4 cancer this time and had spread to her spine too..
Mum struggled on for another 2 years, but the cancer was too aggressive, and spread to her liver and brain.. She died at home in my arms, with my dad, sister and brother all sat round the bed with her.. It was the worst night of my life..
Over the next few years we had more bad news, my mums younger sister, who was only 39, was diagnosed with breastcancer..Then her other sister was also diagnosed with breastcancer, and sadly she passed away too..
I was already having yearly mammagrams because I’d had a couple of cysts. This was before mum died, I remember the first time I went, Mum came with me, I was petrified, as she was going through the hellish treatment at the time.. It was just a cyst at that time,” If only I’d known then, what I know now”….
After we lost our mum, My sister and I, asked our gp if there was any chance, that all these cancers in our family could be hereditary, no was the answer, just bad luck they said.. So what could we do, we didn’t know where to go, or who to ask..
We looked into our family tree, and found out that there had been around 8 relatives on mums side that had died from breast cancer, the youngest being only 32.. After a lot of pestering, Our local hospital eventually put us in touch with a genetic counsellor, we met her and started the looking at family history, but the funding for this service stopped and we were left in limbo.
So I just carried on with my yearly checks.. It was after one of my mammagrams, I was called back for another. The hospital rang me at work it was a Friday afternoon, I was to come in on Monday morning, what a long weekend that was..
So off I went to the hospital, for what I thought was just another mammagram, so I’d gone on my own, I was there nearly all day, ultrasound, mammagram,10 biopsies under xray..I had to sit at a mammagram type machine, and with my boob squashed flat, a needle came down, and took a sample, it was like a giant sewing machine, After 3, the nurse went off to look under xray, she came back and said she hadn’t got anything, it took 10 attempts to get something, it hurt like hell. I felt sick with fright.
The next day I was black and blue
Come back in a week, the wait was hell.
I went back the next week, Thank god, its not cancer.. Calcification they said its ok, we will check it again in 2 years..
It was about six months later, I was having a bath, and I felt a lump, it only seemed to be there when I was laid down, when I stood up it disappeared.. It cant be anything surely.. I spent the next week with my hand down my top, checking to see if it was still there.. It was..
I told Andrew, he went mad at me for not telling him about it sooner, I was scared to.
I went to the doctors, my doctor said yes there was definitely something there, but thought it could of been caused by trauma, from the biopsies I’d had previously, as it was in the same breast, nearly the same place..he referred me back to breast clinic, I had a mammagram, and then had to go and wait in the waiting room, I needed to see the doctor. Oh god, not again.. there’s something there, the doctor said I’d need a needle biopsy under ultrasound..
Come back in a week..
It was the longest week of my life, I was absolutely petrified..
We went back to the hospital, it was the 6th January, the day my life would change forever.. we were called into the consulting room.. We sat there.. The doctor said, I’m sorry to say, you have breastcancer… I went numb, I couldn’t cry, couldn’t take in what he was saying..
All I could think was I’M GOING TO DIE…
He said we could probably be able to get it with a lumpectomy,and radiotherapy, but if not, I had to consent to a mastectomy.. I wanted to get rid of it all, I asked would he take them both off, he said, he would but not yet, lets get through this first.
I wasn’t bothered about reconstruction.. But the more I spoke to my consultant, I decided I would have one.. I looked at the bundle of leaflets we were sent home with.. The flap reconstructions looked massive surgery, as I have a bleeding disorder, we decided the best one for me would be an immediate expander implant..
I was booked in for a mastectomy with immediate reconstruction using expander implant and sentinel node removal…
This photo was taken after first inflation of implant
The results from the sentinel node, came back positive, I had to have a full node clearance, it would be done in 2 weeks.. Then I was going to have chemotherapy, all I could think about was, I would lose my eyebrows and eyelashes, I wasn’t that bothered about my hair..
after Andrew had shaved my head..
I had fec-t chemotherapy 8 cycles 3 weeks apart, it was really bad, and I was admitted 5 times with neutropenia, and then on chemo 7, I had sepsis, which started in my hickman line, this to be removed.. Because I was so weak, it was decided I would only have half the final dose of chemo, as they didn’t think my body would take it…
this was just before I went into hospital with sepsis..
Whilst all this was going on.. I read an article in a magazine about a lady called Wendy Watson, and her book, I’m still standing, I ordered a copy from my local bookshop.. I read it all in one go, I couldn’t put it down.. I asked my consultant, did he think it could be hereditary, no, he said only about 6% of bc are hereditary.. I was adamant I wasn’t going to be fobbed off again..
I asked could I be tested for the breastcancer gene, he agreed that he would refer me..
I also asked if I could have my other breast removed, as I would always be worrying.. He agreed.
I had the gene test done in june, and it was the following may when the results came back.. as I was the only living person in the family with cancer to be tested, they had nothing to compare it to..
The results were positive for brca2..
I was so relieved, I knew it was too much of a coincidence.
I have my second mastectomy with becker expander, but unfortunately I lost it due to infection. I had to wait 6 months to have another one put in..
after having the implant changed to permanent silicon implant, I had 2 lots of lypomodelling to fill in dips..
I had a break from breast surgery for a while, and had a total hysterectomy.
Just after I had my hysterectomy, we found out that Andrew, had throat cancer, he had been suffering with losing his voice, no pain. He had surgery on his vocal cords, because we caught it early, they managed to save his voice box.. He had 30 sessions of radiotherapy, which was horrendous, his neck and throat burned inside and out.. He has just got his 5 years clear.. I’m sure because of my cancer, and us being so aware, that something was wrong with him, and getting it checked out quickly, it saved him losing his voicebox..
The following year, I had my nipple reconstructions done.
This was done under local anaesthetic, It was amazing to watch them being done..
Then the icing on the cake was the areola tattoos, which I have had done twice..
We as a family have been to hell and back, we also lost our beloved dad, to cancer too, he had a rare bile duct cancer, which when diagnosed was inoperable.. He underwent gruelling chemotherapy, which worked well for 12 months, but then it took over his body, and he sadly passed away, at home in my arms with all his family round him…
It enough to watch one parent pass away in your arms but two, nobody should ever go through this…
I’M DETERMINED MY BOYS WONT GO THROUGH THIS…
This my Breastcancer/brca story, if only I’d known about wendy and the nhbch, and more about brca before mum died, I might not of had to go through 12 oprations, chemo, and radiotherapy..
Knowing I am positive for a faulty brca gene, has definitely empowered my family, as my sister has since tested positive, and had preventative surgery.. Other family members have also been tested, some positive and some negative.. The positive thing to come out of my cancer, is that it has probably saved some lives in our family
IF ONLY I’D KNOWN THEN, WHAT I KNOW NOW!!