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“At first I thought I had mastitis, which seems silly now as my kids were 9 and 12 at the time! I went to my doctor, who basically told me to go away, because of course I couldn’t have mastitis, and not long afterwards I felt a lump in my breast. I didn’t feel I could go back to the doctor at the time, but I kept getting people to feel the lump- everyone kept saying it was just a cyst. 14 months later I went back to my doctor- at first they said it might just be scar tissue from breast feeding- I’m not sure that’s actually a thing though?
I was referred to the hospital and, two weeks later, went along to the breast clinic. My appointment was ten past two, and I just remember thinking ‘I hope I’ll be done in time to pick the kids up from school’. The clinic was packed, and I waited over two hours. The doctor didn’t seem sure that there was a lump there but I was sure I had one, so sent me for a mammogram and then a biopsy, which was really painful. The results were benign, but the doctor wanted to do another one, to make sure the right area had been tested. I really didn’t want another biopsy, but I went along with it, and then I sat and waited again. By this time, I was the only person left in the waiting room. There had been one lady just ahead of me all day, and I saw her coming out of the consultation room in tears. I thought ‘that’s why she’s been so long; they’ve had to give her bad news’. What I didn’t realise was that they had also kept me back to do the same- I had breast cancer.
It was completely surreal; the breast care nurse was in the room and they were already talking about a lumpectomy. They asked if there was anyone they could call, but I just said ‘no, I’m fine’, and went home. The next day, I went back in with my partner and the nurse talked us through it all again. We were just about to go on holiday to France, and they allowed me to delay the lumpectomy until we got back. The whole holiday was surreal; I felt fine but the cancer was in the back of my head the whole time.
When we got back, I went for surgery, and when I woke up I found they had also removed my lymph nodes under my arm, so I knew it had spread beyond the original tumour. It was then that they told me I would need a full mastectomy. I was devastated- this was what I had been dreading. I wanted an immediate reconstruction, so was told that I would need to have my chemotherapy first to get rid of as much of the cancer as possible before my surgery. I had chemo over the winter, and coped reasonably well with it. I had to stay as normal as possible for my boys, although they did struggle with it all at times. Having to get up and do normal things for them helped me so much- I have found it much harder the second time around as they are now older and don’t need me so much day-to-day and I have less of a routine.
I started to lose my hair, which, at the time, was the worst part of the whole thing. People don’t tell you that it actually hurts- a bit like when you have sensitive skin from the flu. My eyelashes started to fall out, and I was wearing sunglasses in January because my eyes were so sore. I had really long blonde hair, and I had started to cut it shorter, but it started to fall out much more and I eventually decided to shave my head.
My partner shaved it for me, in our kitchen, while my 9-year-old was bawling upstairs- he was so upset by the whole thing. I know it’s all for a good cause, and people are really well intentioned, but I really hate those ‘brave the shave’ campaigns- in real life, you don’t have crowds of people cheering you when you have to shave your head, and your hair doesn’t just grow straight back. I had a wig fitted, and I did wear it most of the time I went out- it was really important to my kids that things stayed as normal as possible and this helped.
At the end of chemotherapy I went over to Birmingham to discuss my mastectomy and reconstruction. When I got there, they said that they actually couldn’t do the reconstruction until I had gone through radiotherapy, so I had to go ahead with the mastectomy without it. It ended up being done on my 39th birthday at Princess Royal at Telford, waking up after the surgery was horrible. It was 14 months before I could have my reconstruction, but it’s the best thing I ever did. I know people who have said they wouldn’t bother but it was so important to me- breast cancer takes away your hair and your breasts- everything that makes you feel like a woman. I don’t think anyone can really know what they would do until it happens to them. It made a massive difference to me to have the reconstruction and begin to feel like myself again. I had five reconstruction operations in all.
After my mastectomy I had a course of radiotherapy and was put on Herceptin. At the start of treatment the nurse told me it would take a year out of my life- in reality it was nearer to three. There were some positives that came out of the whole thing- I was working in an admin job but was made redundant during my treatment so I decided to change my career. I enrolled on an Open University degree course, volunteered with Home Start and ended up working for Shropshire Council as a Family Support Worker for Children’s Centres where I still am. I’d had experience of being a single parent and I wanted to help other families who may be vulnerable or need some support. I moved on and life was good.
In November 2016, I fell on some wet leaves at work and afterwards had some pain in my rib. Thinking it was broken, I went to the doctor who sent me for an x-ray. A couple of days later, the house phone rang at 7pm and I could see it was the doctor. I knew they wouldn’t be calling at this time for no reason; he said there was an ‘area of concern’ and that I needed to come for more tests. Soon afterwards, I was told I had tumours in my liver and both lungs- caused by a small number of cancer cells that had been left behind in my body last time. I was in total shock. I don’t smoke, and I had absolutely no symptoms. I still don’t really have symptoms, other than those caused by the treatment. What is really amazing is that the rib pain was a red herring- I had a bit of inflammation in my cartilage but nothing major- if it wasn’t for that, my cancer would not have been discovered and my position today could have been a lot worse.
I had another round of chemotherapy, and this time it was so much harder. The one positive is that chemo is predictable- I knew which days I would feel awful and spend all day in bed, and when I would start to feel OK again. This meant I could plan my weeks and do at least some normal things.
I have lost some friendships over my illness- some people just don’t know what to say and can’t handle it. People are afraid to ask questions, and it’s amazing how many people I have had to comfort, when they get upset about me being unwell. I hate it when people say I’m ‘brave’- I’m not brave, but I am angry about it; it does all seem very unfair.
Now, I’m feeling reasonably well and we’ve had a good year. My partner and I got married during my chemotherapy in March- on my birthday, to ‘counteract’ my mastectomy on my birthday seven years earlier. I was in hospital the week before and I was worried I wouldn’t make it to the wedding but it was a brilliant day. We had a ceremony at the Shrewsbury Museum and dinner at the Golden Cross. We only had 25 people there, so we’re having a big family dinner later this year, and a massive party for all of our friends. We’re social people- we normally have a big New Year’s Eve party, and as I was diagnosed just before Christmas we nearly cancelled. In the end, we went ahead and turned it into a bad taste wigs party- as much as it kills me inside to have to wear my wig, I just decided to embrace it and it was a great night.
I have a scan every three months, and an appointment with the consultant. I’m up at the hospital every couple of weeks in between for tests and check-ups. I’ve been told that my cancer can’t be cured, but it can be managed; people live well with some cancers for many years these days. I’m now taking Herceptin and Perjeta, and I’ll stay on these for ‘as long as I am responding’ to them. New treatments are coming out all the time, so you never know what might happen.
Life is good now, different but good. I’m doing my best to live the best I can whilst managing treatments and some side effects. I’m back to work and gradually doing those things I love and have put on hold for treatment. I have been extremely luckily to have a supportive family, fantastic funny friends and the support of all the staff at the hospital has been second to none.”
Herceptin: Herceptin is a drug which can help control the growth of cancer cells that contain high amounts of HER2 (human epidermal growth factor 2). It works by blocking the effect of HER2 and encouraging the body’s immune system to attack and kill the cancer cells.
Lumpectomy: Where a tumour is removed surgically from the breast.
Mastectomy: The surgical removal of the breast. There are a number of different forms of mastectomy.
Metastatic: Metastatic cancer is one that has spread from the original site, into a different area of the body. This is often through the bloodstream or lymph system. Tumours of metastatic cancers are known as secondary tumours.
Perjeta: Perjeta is a chemotherapy drug used to treat patients with HER-2 positive breast cancer. It is used alongside drugs such as Herceptin to attack and kill cancer cells.
Read more patient stories
Alan lives in Shifnal with his wife Elsa. He was diagnosed with prostate cancer in February 2017. He spoke to us about his experience of treatment and how keeping active through his radiotherapy helped his recovery.
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