Andy's Story

I had been diagnosed with PC and very shortly afterwards I was having a bone scan when I was in alot of pain in my kidneys. I was hospitalised and a catheter was put in as my kidneys were not draining properly. Before I was discharged I was put on hormone tablets for 4 weeks and was going to then have hormone injections after 2 weeks and then every 3 months. I had severe pain in my legs from the tablets but did not know at the time what was causing it. I thought it was my cancer spreading to my bones as it felt like they were really aching - this was fairly terrifying. It kept me awake at night. My advice would be to make sure you ask as many questions as possible about any medication you are given and understand the potential side effects. I would also ensure you have strong painkillers to get you through the worst of the pain. If you are getting alot of pain and other bad side effects then make sure you speak to your CNS or healthcare team as soon as possible as you may need to come off the medication and be put on a more agreeable treatment. I know people who have reacted very differently to the tablets- some take it with no really side effects and others have had to come off it as the side effects were severe.

My first advice would be to get as much exercise as you can. This will help muscle tone and your general fitness. Very soon after diagnosis I bought a e-bike and this was one of the best decisions I made. It enabled me to go out during all of my treatments and it helped me physically and mentally. It is a scientific fact that exercise helps you deal with your treatment better and makes the treatment more effective. Looking back I think this really helped with all my therapy treatment from hormone to chemo to radio and brachy therapy. I would use layers of clothing to deal with the hot flushes as it is then easy to remove a layer and help you stay cool. Definitely speak to others who are going through the same treatment. I was given two phone numbers by my CNS of men who ran support groups and speaking to them was invaluable. Make sure you ask if there are any support groups you can talk to and then make sure you understand as much about the side effects as you can. For me, regular walking and cycling helped keep me active physically and mentally. It was real escapism from dealing with the diagnosis. I stopped working the day I was diagnosed as I knew I had a tough treatment path ahead. I did crosswords - a simple thing - but I feel it was a good distraction and kept my brain functioning. The hormones make you tired and give you brain fog so while I exercised I also rested and slept when I felt I needed to. You need to listen to your body. To sum up I would talk to other men with PC, exercise regularly and keep active physically and mentally. Also ask your CNS if there is any counselling available. I was offered free counselling from Macmillan/BUPA for me and my family. Always reach out to your CNS if you have any questions or concerns about your treatment. My cancer team were very good and always answered the phone or responded very quickly to any questions I had.

I had been told that you can lose your fingernails or toenails during chemo as it attacks fast growing cells so your hair and nails are affected. I bought some polybalm and put this all my nails twice a day during chemo. Only one of my nails was slightly damaged so maybe it was the balm that helped. I spoke to men that had gone through chemo and this was very useful. I wanted to find out more about the cold cap and heard different stories - it seemed clear that each person had a different story and the chemo affected them in different ways. I decided not to go for the cold cap as you are there for a lot longer and it is painful. My hair started to fall out after then second chemo session both on my head and body - mainly legs at first. My facial hair also fell out and I didn't need to shave for 6 months. I bought a lot of hats and caps and this was more to do with not having to see my hair or lack of it in the mirror. I didn't want constant reminders or to remind my family that I was ill. I wore caps at home and a flat cap out most of the time and it really helped me forget about the issues. My hair did grow back after 6 months following chemo - it came back thicker and the same colour as before so I was quite lucky although I now have a lot of hats I don't need! The chemo knocked me out a bit and I just stayed in bed when I needed to and didn't push myself. When I felt okay I got up and went for a walk or a cycle - it's important to exercise as much as you can but also listen to your body. When I was nauseous and had stomach pains I took anti-sickness tablets and when I got bad headaches I took painkillers. I always tried to drink lots of water and bought a very large water bottle which helped remind me. Another thing I noticed was that my heart rate went up about 12 beats per minute during chemo and would peak straight after each cycle. I did get nerve damage in my back from chemo and this caused referred pain in my legs which stopped me sleeping. I bought a knee pillow which enabled me to sleep on my side better and meant I got some sleep - sleeping on my back was not an option as too painful. I was getting other side effects during chemo but I think they were due to the hormone tablets and injections.