By: Michelle Gray
My journey first started on 14 July 2001, when I found a lump in my left breast whilst having a shower. I knew straight away it was cancer even without it being confirmed. My parents (Dad and Step-Mum had just gone away for 3 weeks to USA). I was 34 years old, getting divorced with 2 boys who were 8 and 9. My Mum had died of breast cancer when I was 21, the year after I got married, she was 47. Why now? My life should just be starting! I managed to get an appointment to see my GP within a couple of days, who referred me to George Eliot Hospital, in Nuneaton. On 19 July I had triple assessment carried out and it was confirmed, I had got breast cancer, on 31 July. My whole world had now crumpled around me and there was nothing I could do. I elected to have a left mastectomy and level 2 axillary lymph node clearance, which was carried out on 15 August 2001. The histopathology was consistent with a 32.5mm sized tumour which was grade 3 and 3/19 lymph nodes were involved with metastatic cancer and an oestrogen receptor status was -ve. After the MDT it was felt that I needed chemotherapy and local radiotherapy, due to my age and family history. I remember coming away from the consultancy appointment with my step-mum and all I kept saying was “I’m going to loose my hair!” My Dad, bless him replied, “Michelle, it’s your life or your hair!”. 20 years on and that image is still with me. During all of these hospital appointments, I was attending solicitor appointments and court as I was getting divorced and my now ex-husband wanted to separate the boys, so CAFCASS was involved too. I remember being in court one day, just after having chemo, I’d lost my hair so I was wearing a bandanna and I felt so poorly and I have no idea how I got through it, but I did. I know that battling the divorce changed my focus off the cancer onto that instead. I had 6 cycles of FEC chemotherapy which I lost my hair which was very traumatic, which started 17 September 2001. I did have a wig, but did not feel comfortable wearing it, so I mostly wore bandannas, and hats. Lucky for me we were going into wintertime. I remember the first time of my hair coming out, I was having a shower and thinking, why is not the water running away. I put my hand down through the soapy suds and found clumps of hair … my hair. I cried … this was it, my hair was coming out. After a few cycles I had my hair shaven off at the local barbers.
On 20 February I commenced radiotherapy. Due to the treatment clipping my heart and lungs, it was decided, I would have electron version, but unfortunately there would be more skin damage. Around this time my youngest, Gareth, was involved in a footballing accident and had his knee broken. He came with me to the hospital to watch them mark, tattoo, me up using all the lasers etc. Gareth was fascinated with the whole procedure, and certainly enjoyed attending hospital with his Mum, looking through the window as the equipment did it’s job. I had my last radiotherapy on 20 March, my chest was very sore as if I had been severely sun burnt, and I struggled to wear a bra for quite a few weeks. Due to my Mum having breast cancer and dying at the age of 47 (lumpectomy and radiotherapy) and my Granddad having breast cancer, all of my data went over to Birmingham Women’s Hospital. The scarring on my chest was quite significant and I was given laser treatment to help remove the damage. Wow this hurt. Lying stripped to the waist, wearing dark sunglasses whilst a male consultant, zapped my chest with a laser … ouch! But I will say the end result was fantastic. However, over the years the broken blood vessels returned with a vengeance. I had very regular check-ups with my breast consultant and one day whilst I was sat there, I thought, do you know what, I want to look normal. My next venture started of my reconstruction. In 2003 I underwent a left chest reconstruction with DIEP flap. Mr Park did an amazing job and people still are amazed when I show them what I have had done. I was given the ‘all clear’ just before my 39th birthday which was a wonderful feeling – I cried so much with relief that this journey had come to an end. Little did I realise that in March 2019 my whole world would come tumbling around me again and I would be battling for my life. In 2019, I lost my home, due to a failing business and ex-boyfriend and I lived full-time in my mobile caravan on a farm. I received a letter from Birmingham Women’s Hospital advising I had got a pathogenic mutation in BRCa2 gene. I was referred for prophylactic bilateral salpingo-oophrectomy at UHCW, Coventry, which was carried out on 30 August. I knew something was wrong when my consultant came onto the ward the following morning with a Macmillan Nurse, you never forget the uniform when you see it. They had found I had peritoneal disease. Histology confirming high grade serous carcinoma of the fallopian tubes, FIGO stage 3c at least. What! I had only gone in for a preventative hysterectomy – how could I have cancer! I was 5 weeks into working at Mothercare in Rugby, and me thinking I’d be having 6 weeks off and returning back to work but so was put onto sick leave and not knowing how my journey would pan out. I had a CT which found carcinoma in the right breast. After a triple assessment I was grade 3 HER2+, not amplified – that news was presented to me on my 53rdbirthday last year. Happy Birthday Michelle and oh by the way you have breast cancer too!! I remember my consultant informing me of the news and all I said was “oh ok”. I do not think he expected me to react so calmly as his face was a picture. My BCN then took me into a side room and went through further details with me. In the December I decided I needed to inform my sister, she was 13 months older than me, and we had not spoken for over 15 years. I wrote to her explaining about the BRCa letter and my subsequent diagnosis and that said that she should get checked out. A couple of months later, she advised that she was all clear. I felt very angry and bitter – why me? How come she does not have it and yet I have got cancer again and twice as bad this time! Life just did not seem to be fair. It also meant that my two boys, well men, 28 and 29 needed to be checked out too as not only are they high risk breast cancer but also prostate cancer. There were various consultant appointments, which were sort of a blur, but a feeling of, here we go again, though this time, one thing I would be control of was my hair. My hair was half-way down my back, and I would decide when I was going to have my head shaven. As I was a BRCa2 I would be given a PARP inhibitor and the clock would now be ticking, as NICE have certain stipulations on when this can be started. I had first line chemotherapy with Paclitaxel and Carboplatin which should have been for 6 cycles, 21 days apart, given by a PORTacath which was fitted minutes before my first cycle. I ran around to the Arden Centre, to start my chemo, puffing and panting like an old woman. After my first cycle, I developed significant side effects; rashes and peripheral neuropathy, I was switched to Carboplatin as a single agent. I completed all 6 cycles eventually on 17 January 2020. My, that was certainly a rollercoaster and many a time I thought of stopping it all. The hours I must have cried by myself – it was tough.
My eldest Michael is a hairdresser, and after my first cycle of chemo my hair had started to thin so I asked him to cut my hair into a bob. After cycle 3, I was very bald on the side and back, so I got Michael to clipper my hair off. That was the best feeling – I did not have to worry about my hair anymore, I could scratch my head and not fret over my hair coming out. I learnt from a lovely lady at Bee Bold Bee Beautiful, in Atherstone, how to use scarves to create bandannas. She herself had had breast cancer and knew the importance of looking good even if you did not feel like that on the inside. The compliments I got were a lovely pick me up. I always dressed up for my chemo – big pants, war paint on (make-up), hair on (wig or headwear). This sentence I use a lot with fellow Ovarian Warriors … put your big pants on! You have to laugh, or you’d cry! I was fortunate to attend a Look Good Feel Good session on how to put on make-up etc. I am not big into make-up anyway, so this was a huge learning curve, but being with fellow female chemo warriors, I thoroughly enjoyed the session and from that day forward, I wore make-up. In January, Mothercare went into liquidation, so now I was no longer employed on sick leave, I was now claiming benefits and having to claim for redundancy pay etc, let’s just keep kicking a person when they are down! On 21 February I has a laparoscopy to see if the chemo had killed off enough cancer for me to have my debulking surgery – yes – I could have my surgery – what a relief, the chemo journey had been worth it. Sunday 29 March 2020, just as lockdown had started due to Covid, I had phone call at 8am from the hospital, asking where I was? No-one had advised me that my surgery was that day, in fact morning. I had got 2 hours to get to hospital to have my surgery and then my consultant had no idea when she would get any more theatre time. My mind went into overdrive. I cried, I shouted, I panicked, but, yes I got to hospital intime for my laparotomy, omentectomy and peritoneal biopsies achieving optimal debulking. The final histology consistent with residual metastatic high grade serous carcinoma with a complete or near complete response in omental biopsy. I was cut from below my breastbone, right down to my pubic bone. I was looking like a patchwork quilt with all the scars I was getting on my body. This surgery was hard going, even getting in and out of bed required a particular procedure to undertake. I could not drive for 6 weeks again, which for me was like having my legs cut off – to have a car sat outside and not be able to use it! On 24 April 2020, I saw my oncologist with regards to PARPs – I would be taking Letrozole 2.5mg for 5 years for the breast cancer and maintenance treatment with Olaparib for 2 years for the ovarian cancer. The aches, pains, exhaustion, sleepless nights, that I got and still have from these can be crippling some days, that is on top of the peripheral neuropathy that I still have. I needed to have 6 cycles of the PARPs and then I could have my right mastectomy. On 13 November 2020, and after a COVID-19 test, I attended Nuffield in Leamington for my mastectomy surgery and sentinel lymph node biopsy.
Considering I was having major surgery again, I was so excited as I was going private – I was the luckiest person … so I felt. I would have been out the same day, but due to me having ovarian cancer, I was high risk of DVT so had to stay in overnight. I am now 7 weeks after this surgery and had the amazing news on 3 December, that originally, I was diagnosed at stage 3c, but following intravenous chemo and 6 cycles of PARPs it was down to a 1c – wow – such amazing results. This refers to my breast cancer only, my Ovarian cancer is still Advanced 3C. I cannot deny this has been and is a tough journey, that I certainly never volunteered for, but it has happened, and I have to accept it. I have met some amazing, inspiring people along my journey, some who have become good friends and support.
We can do this fellow warriors..