One thing that has played on my mind a lot recently, is hearing people say they won’t let cancer define them. I really can see why they say this, but for me I think it has to. It came in and changed my life and made me sit back and think about what is important to me.
The other day I found myself very quickly telling a colleague all about my cancer and then wondered if it bored people. Then I thought back to the day where the nurse said to me ‘sorry, its cancer’ and I cried at that word. Because that word IS scary. Cancer does kill people, but it can also be treated. Some people will live with it as a long term health condition… but for our society it is still a word we fear, and that is what I would like to see change.
5 years ago my son was diagnosed with Type 1 diabetes age 21. From a normal life where he had just finished his degree at Liverpool University he had to adapt to a lifelong condition where he has to inject himself multiple times a day. I remember crying when he got that diagnosis and wondering what difference it would make to his life. I wanted to drive the 400 miles to give him a hug and look after him. My husband at that time just said OK, it was something that he would have to get used to. Not beating about the bush – I couldn’t accept that – I wanted to protect Olly. Now when I had my cancer diagnosis I was faced with a similar kind of situation and I was the one telling everyone it was no big deal.
18 months after diagnosis I’ve completed all the major treatments, and am on Hormone Therapy. I can’y help but worry about every ache and pain. I don’t get a headache anymore – I convince myself it’s brain cancer. The mid-life’ hip pain – my mind tells me that it’s cancer that’s gone to my bones. Even the lump on my little finger which my doctor confidently says is arthritis – I was sure it must be finger cancer… I googled it, so it must be true.
But there are so many positives. I really appreciate every call with family, every text to and from my kids. The pictures of them and their partners take me back to how carefree life was when I was that age. I find myself recalling memories from the past to them…just in case anything happens to me. I’ve even decided that for if I am ever lucky enough to have grandchildren that I want to be Nanna Nikki, and keep dropping that in, so if I’m not around when that time comes they will know what I would like to be called.
Cancer treatment became my life, and now with daily tablets and monthly injections the reminder is still there.
But I am a different person this side of diagnosis, I live for the moment and try not to worry too much about the future. I am stopping to think what I want from life, and how I want to spend my time, instead of drifting along. I am learning each day what is important to me, and my only goal is to make the most of everyday. I hope I am a happier, less stressed person for it.
My first blog, was Thankyou Cancer and I do keep thinking back to this. I’ve lost friends and family to cancer and it does not deserve any praise. I’ve seen the devastation it can cause. Too many people are still dying of this terrible disease. The ‘Cancer Club’ was not one that anyone would choose to be part of, but its given me the chance to meet some amazing people and also to learn so much about myself.
So yes, cancer has changed my life, and in doing that it defines me – its up to me to make it for the better…
The reality of my chemo experience….behind the ‘brave face’ I was putting on.
I was due to have 6 cycles of chemotherapy, and these last 3 were be specifically targeted to the make up of my cancer. The results of the biopsies showed that there were parts that were hormone receptive positive and treatment for this had been found to be very effective. We had been away for the weekend, having our early Christmas with family, so when we got home just after midnight I was excited to have a letter from the oncology department. After over a month of test, scans and x-rays I was finally going to know what treatment I was going to have.
The letter said that it was to be Pertuzumab, Trazumab and Docetaxel and they had enclosed a leaflet explaining these. Unfortunately someone had send an out of date leaflet which said these drugs were used to treat breast cancer that has spread or come back in the same breast but cant be treated with surgery. We opened the letter at 12.30 am so as you can imagine it sent us both into a panic. I remember crying into my pillow, what had they found? Why hadn’t they told us? Nothing Mark could say or do would make it better. We needed answers but there was no way to get them. We’d had a lovely meal out with my husbands family and I had taken comfort from talking to my brother in law who was an extremely knowledgeable and respected doctor with oncology experience and really knew his stuff! That advice is the tag line to my blog…you have done nothing wrong, its just very very very bad luck. None of us were to know that 3 weeks later he would die suddenly from a heart attack. If you take one thing from this blog please let it be one thing….life is short, make the most of each day, make memories and don’t have regrets. Everything happens for a reason, only you can chose to make it a positive.
I was determined that I was going to go to Ian’s funeral, but as the time got closer it became apparent that I wouldn’t have the strength, and the risk of catching an infection was too great. Being alone that day was horrible, mostly because it was the first time the reality that it could be me next hit me. I had various pieces of paper dotted around with ideas for my funeral so I started putting them together. It was the first time I had been on my own at home, and finally I let myself cry. I think this was actually really good as I had been trying to put on a mask for too long.
The side effects I had were pretty normal – I lost all my hair, eyelashes and eyebrows, taste, although that seemed to come back during the 3rd week after treatment. Spotty, dry skin, and sores that didn’t heal. A few of my toe nails fell off. A couple of them still haven’t grown back. I had constipation and diarrhoea – that was interesting! Then there were mouth ulcers, general sore mouth and throat. A couple of my teeth broke, but it was suggested that I shouldn’t visit the dentist due to the risks with bleeding. I’m not going to pretend this was a problem, I am absolutely terrified of the dentists so I had a secret smile to myself. I was completely exhausted with fatigue, but made myself get out and walk the dog each day, and really appreciated those times just wandering with her.
I put on weight, partly steroids partly lack of exercise and a big part probably of not eating very well! It wasn’t excessive but the ‘chemo stone’ that I had read so much about was so much easier to put on than it was going to be to lose.I tried to read up on the drugs, but at that time it was all such a lot to take in, and its only with hindsight that I realise how spaced out I was. I had lost all my hair and my face looked drawn. I tried to put on a smile every-time I spoke to family and friends, but it was hard. Inside I was broken and I couldn’t see how I was going to heal.
In between treatments I had been having MRI scans which showed that the tumour had grown from 6cm to 10cm and then only reduced by 0.3cm in all the time that I had been having EC. I felt deflated, it was such invasive treatment.
Christmas came and Millie was working Christmas Day. We had the day to ourselves and then picked her up to be with us. Time to put that brave face on again, but I was so tired. it was 4 days since I had had chemo and the steroids had worn off and all I really wanted to do was sleep…but I also didn’t want to miss a minute. Olly had gone to his dads in Kent. I didn’t like to challenge this as I knew I would feel unwell but it was so hard, not having him with me and not knowing if this would possibly have been my last Christmas. Although I had remarried and was very happy the divorce was still raw, as well as the feeling of rejection.
I did get to spend some time with Olly after Christmas, and at least I was feeling a bit better for this. While he was down we arranged to go for a trip on a Steam Train across the Yorkshire Dales for Marks 50th Birthday in February. We are lucky to live 10 mins walk from where the Railway Children was filmed at Oakworth station in West Yorkshire, and it was going along this line and then following the main line up to Carlisle. Finally I had found something to look forward to, and what a difference that made.
All in all the 18 weeks went really quickly and I started having appointments for the next stage of my treatment – the mastectomy with immediate reconstruction, even though the tumour had shrunk I had always known that this was to come. Sometimes they can perform a lumpectomy and save some of the breast, but the size of my original tumour meant that this would give me the best chance of the cancer to be completely removed. However when they had the last scan results they were so impressed with how these drugs had worked…the tumour had shrunk back down to 6cm that the Oncologist wanted to try 1 extra cycle. Talk about being an emotional roller-coaster. I went with the idea, I wanted all the treatment available, but my body decided to say no, it had had enough. I had numbness coming in my fingers, so called the hospital. They identified this as neuropathy, another side effect of chemo which can become permanent. I had no strength left.
So as with everything we muddled on, plans changing every day. I didn’t get to ring the bell at the chemo ward, as I was thinking that I would be back for the 7th cycle. Suddenly this was cancelled and I was booked in to have my lymph nodes removed 5 days later. There was no time to recover from the chemo, but I was glad. The tumour was large and I could feel it and see it in the mirror. Finally it was going to be removed ….