As I'm a few months down the road on my cancer journey, I will fill in the gaps prior to today. I so wish that I had started this earlier as my friends suggested!
I am 54 years young, with three grown up children.
On Monday 3rd September 2012, I visited my GP, with concerns about a breast lump I had found. My doctor examined me and had no hesitation in completing a rapid response referral to the breast clinic. She said I would be seen quickly. The NICE guidelines say up to two weeks for urgent referrals. For most of the this year, I had been back and fore the doctors with fatigue like I've never known, to the extent where I had to have a month off work to just rest. I normally enjoyed regular zumba and pilates classes, but was too exhausted to keep them up. I felt like I had a hangover everyday, but minus the enjoyment of the alcohol the night before!! All my blood tests revealed that I was fit and well. I have discussed this with a few other women and they had months of fatigue before other symptoms presented themselves too.
I began an anxious wait for a breast clinic appointment. On Friday 7th September I rang the new appointments office to ask if they could tell me when my appointment was as I hadn't heard anything and I didn't want to go through the weekend without knowing. They told me that they didn't have a date and that it would be up to six weeks. I was totally shocked and reminded them that it was a rapid response referral and that I couldn't wait that long. They explained that due to the long waiting list for urgent referrals, all patients had to wait up to six weeks.
I broke down in tears then rang my doctors surgery. My GP rang me back and was as shocked as me. My GP said her referral laid out the details of the lump and the urgency to be seen. She wrote and faxed an expedite letter too reinforcing that I needed to be seen urgently.
I rang new appointments and told them this and they told me to ring again on the afternoon of Monday 10th September, after the consultant had seen the expedite letter.
The weekend was an emotional nightmare. I rang new appointments at the hospital on Monday afternoon, to be told that the consultant had to show the referral to another consultant and to ring back on the afternoon of Wednesday 12th September, but there was no guarantee I would be seen any earlier than six weeks. I broke down again.
Enough was enough, I rang the Spire Hospital in Cardiff and made an private consultation appointment for the 12th September. I was lucky in that my private healthcare insurance covered £400 of the £431 fees, to cover the consultation, mammogram and ultrasound scan. The private appointment resulted in a fast track referral by the private consultant into his NHS breast clinic for a gun biopsy on the following Monday. The consultant told me to come straight off my HRT and to have my contraceptive implant removed. My hot flushes returned with a vengeance within days!
And so, I found myself sitting, with my youngest daughter, with a group of women all wearing the same tie up gowns, but with various patterns on on the Monday. I was scared, but I did find the gown thing rather funny and even found myself thinking I wish I'd got one with hearts on!! I got chatting to a lady next to me with a bleeding nipple. She showed me a picture on her phone of the said nipple and I thought what a funny world I've been thrown into! I cannot lie, the gun biopsy was not a good experience for me and they had to use a lot of anesthetic to get the five biopsies. The staff were fantastic and even fanned me when I had one of my hot flushes.
On the 26th September I met with the breast consultant and he told me that I had stage 2 breast cancer. The lump was 22mm. I had to decide between a lumpectomy and a mastectomy. I would need radiotherapy afterwards, every week day for three weeks after. I sat and listened quietly and then said that I was not surprised as I know my body and I just knew that there was something seriously wrong with me. I didn't cry, but my daughter did - holding her whilst she cried broke my heart. Telling my other three children was painful and the hardest thing I've ever had to do in my life.
The breast nurse came to see me a few days after and brought pictures of the results of a lumpectomy, which were helpful as I need visual things. I decided on the lumpectomy or Wide Local Excision, to remove the cancer. I would also have SLNB, sentinel lymph node biopsy, to check whether the cancer had spread through the lymph nodes. I would be in hospital for two nights. I decided to keep the following week free to prepare myself mentally and emotionally and to enable me to see John Bishop live in Cardiff!!
On the 4th October, I underwent a lumpectomy and SLNB at the Llandough Hospital in Cardiff. I recommend getting some loose comfy PJ bottoms and a soft stretch camisole top (for easy access) to wear in hospital, along with a dressing gown. My boob was checked regularly and I also got very warm. I guess the hot flushes didn't help! The staff were lovely and I met some lovely ladies in the ward and the food was great. I was wobbly after surgery and I needed the painkillers. Showering was not easy, but a huge relief, especially when I managed to wash my hair. At home, I managed to pull the shower head off its high holder and do my hair separate to showering my body. As I live alone, I stayed with a close friend of mine for a couple of weeks after surgery and for the first time in my life, I allowed someone else to take care of me and boss me about. My boob was sore, felt rock hard and was badly bruised and the area under my arm was very sore too.
I went back to the hospital, with my close friend, to see the consultant on the 15th October for my results following surgery. I was shocked to get the new diagnosis of triple negative grade 3 cancer. This is a relatively newly discovered, faster growing, more aggressive cancer and only up to 20% of breast cancers are triple negative. The cancer turned out to be bigger than first though at 40mm. My only treatment option is chemotherapy. On the positive side, the margins and lymph nodes were clear.
This news did send me into shock, disbelief and so many emotions I cannot begin to list. The word chemotherapy scared the living day lights out of me. I was told I would lose my hair and that I would have to cancel my holiday to Fuerteventura in January. I sobbed and I got very angry "why me", I had a big swearing outburst and I hardly ever swear!
From that day on, I feel like I have moved over into a parallel world, where I have less control over my own life. Its like I can see my world down below me, but its out of reach at the moment. I look forward to the day that I can cross back over to it, though I suspect that my world will never be quite the same again.
Telling my three grown up children my new diagnosis was horrendous. I tried not to cry and to keep strong and positive, despite falling apart inside. I was desperate to have all my children with me as soon as possible to hold them tight and tell them that everything would be ok, even though I don't actually know if it will be.
I have proved myself to be a very strong positive person through different dramas in my life, but boy this has been the biggest test ever!
In my wakeful hours of the night, I wrote a poem called 'My darkest hours'. It helped me to get my feelings out when they are at their lowest point. Maybe I will share it one day.
My new treatment regime is 6 cycles of FEC chemo, followed by 3 weeks of daily (week days only) radiotherapy.
I have tried to take control of as much as I possibly can in my life - this is so important to me. I made the personal decision not to use cold cap and I have purchased some funky bandanas and I bought a fab wig with the £100 NHS voucher I was given. I attended a weekend cancer course at the Penny Brohn charity cancer care centre in Bristol, which was free to me and my supporter. It was a wonderful experience and has really helped me in so many ways. My healthy diet has got healthier and I bought a juicer. I also use meditation and relaxation techniques I learnt at the centre to help with my stress levels and insomnia. I also allow myself to cry when emotions overwhelm me now. When I feel sad and low and well meaning friends and family tell me to be strong and positive, I smile and though I sometimes feel like punching them, I say "it's my cancer and I'll cry if I want to".
My chemo starts on the 30th November and so I will leave this very long intro blog post and from now on I will post my story as it happens from the week of the 26th November. xx
