Jen, Breast cancer
When were you diagnosed and what with?
I was diagnosed on the 23rd October 2015 with kidney cancer.
How did you find out you had cancer?
I had previously suffered from a lot of illness about 10 months before my diagnosis. During those 10 months I had looked very pale, lost a lot of weight and felt very tired. However, I put this down to recovering from the previous illness! I was feeling particularly unwell about a month before my diagnosis. I felt quite sick and had a loss of appetite and had noticed blood in my urine, at the time however, I thought that I was spotting as I am on the contraceptive pill. One night I woke up in terrible pain and my left side (at the waist and back) was pinching internally and aching. I visited the doctor that day and by then my urine looked the colour of Coca Cola! I was diagnosed with a water infection but after a week of antibiotics and no change in urine colour or pain, I went back to the doctors. I was referred for an ultrasound which I had a few weeks later. They then found a 10cm mass on my left kidney and referred me for a CT scan which I had about 10 days later. That's when they found the cancer. I received a call from my urologist that night.
What did you think and feel when you were diagnosed?
Honestly, I wasn't really sure how to act. I made a few jokes while everyone around me was very upset but I didn't cry (I did when I was told it had come back!) but I felt like I’d known what it was - almost that I'd been telling myself it wasn't going to be good news for a while. Not that you can really ever prepare yourself for such news, but I think my head I'd accepted that it was going to be cancer.
How did the people around you react?
Everyone was very shocked and very upset. I had a lot of outreach and incredible support from people. I was thoroughly showered in flowers, cards and gifts and it was so lovely to know that people were there for me. I think for some people it has been hard for them to express their sorrow and others have been shocked when I've told them how old I am - they have become visibly upset and that's always hard to see. It's great though when people treat me in the same way they did before as it's so important that people understand that cancer does not define us!
What treatment did you have?
I had a laproscopic nephrectomy (key hole surgery to take my left kidney out!) and then took part in a clinical trial for immunotherapy which meant that I would have two drugs given intravenously every three weeks. Before the trial I also had treatment to have some of my eggs frozen and for some embryos to be frozen too. I have participated in the trial for 6 months and now I am currently taking chemotherapy, I take a tablet a day for two weeks and then have a week off and I have a scan every three months.
How did you feel through treatment?
To be honest, after surgery I felt immediately better which sounds crazy but I felt like my insides just felt so much better. I mean, it was painful, don't get me wrong, but I did genuinely feel better after having my kidney taken out.
Shortly before I began the clinical trial, I had my eggs frozen and that was a tough process, emotionally and physically. I was really happy that I had decided to do it but it was tough. I remember crying after the procedure because I was relieved to have done it and got through it. When I began immunotherapy I actually felt really well and throughout the treatment I couldn't really moan as it had few side effects! I tended to feel a bit stuffy and my joints did cause me painful problems but it was worth it.
The chemotherapy however, has been a very different story! The first few cycles were awful, I really suffered with eating and sleeping and my stomach (you know what I mean!). I still suffer a lot now and I have recently developed a new side effect (extremely painful shoulders, collarbone and neck) which isn't fun! However, certain side effects get easier as each cycle passes so it is hopefully becoming more and more manageable.
What happened after treatment finished?
Well, it hasn't finished for me yet but I hope one day I can fill this in and let you know! :)
How did you get involved with Shine?
One or two people actually mentioned Shine to me while discussing groups and charities which focused on my age group. I immediately joined and also joined the Facebook group which is fantastic!
What difference has Shine made to you?
Shine has allowed me to meet others of a similar age and even though we all have different types or even subtypes of cancers, it's just really good to know that I'm not alone. Not that I want anyone to feel how I've felt but it's nice that I know people have experienced side effects like I have or certain emotions that I have. I think it's just really helped me mentally. I felt quite alone for a while and I didn't have anyone who would turn to me and say "Oh I know exactly how that feels!", so it's very much helped finding and speaking to new people.
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
I think the biggest change I've faced is my lifestyle. I haven't been able to work in a long time which has been frustrating. For me, work brings normality and I want to live as normal a life as I can.
If you could give one piece of advice to yourself before your what would it be?
Stop caring about what people think. Be confident enough to go for things!