Jane recently shared her ‘Importance of pets during our cancer journey’ blog and is back as a guest blogger to share her reflections on her Endometrial cancer experiences one year later. She talks about some of the lasting effects from her chemotherapy and radiotherapy treatments and also about dealing with the fear of recurrence. Jane also talks about how she recognises the positive changes on her life and talks about her volunteering role as a Community Champion.
I am just coming up to a year since my treatments ended, the cancer has gone but life has changed. I think that when the treatments end, there is time where you can begin to try to process it all. The endless trips to hospital have stopped and now it is just once every twelve weeks. You sort of almost forget it until the letter drops through the letterbox. Then the feelings come back. What if it’s back?
You begin to think that every twinge is a sign. The fears that you try to hold back can return for a while. I find it hard not to panic but it’s like having a constant reminder. Although the cancer has gone the effects of it are not over. Life must again move on. But how do you begin to manage that?
“Chemotherapy was a challenge and one year later I still have symptoms daily from it.”
It’s hard because although they explain that this can happen, you don’t take it all in at the time. I remember my consents appointment as if it was yesterday. The long list of side effects, I think if anything can show the bravery of cancer patients. Sometimes you know that the treatments you are having are capable of causing serious harm to your body, yet you still need to do them.
I knew when I started treatment that it could cause damage and it did from that very first infusion. My oncologist adjusted doses and prescribed medications, but the damage progressed with each cycle. It’s an aggressive treatment and has to be because cancer is an aggressive illness.
“I have damage to the nerves in my hands and my lower legs. My consultant said it is permanent. It’s called Peripheral Neuropathy.”
There is numbness, cramp like pain, spasms, tingling, and changes in sensation. My hands slip sometimes when I play the piano. It’s one thing I spoke about to the consultant, the quality of life after treatment. I wanted to be able to play. I would be heartbroken if I couldn’t. My legs can be really painful unless I keep moving, sometimes I stumble. Each day I walk, and I am determined not to let it hold me back. It can take away your confidence if you let it, but I won’t.
The other effects do take a while to recover from, but I have found they get better with time. The fatigue, the pains, the nausea, the chemo brain, the emotional effects are now much less. My hair, skin and nails have recovered.
“On the outside I look more like me again, but inside I have changed.”
My consultant said I had an extreme reaction to the radiotherapy and that it was likely to cause some long-term damage. She was right. On my worst day I had 30 episodes of diarrhoea. I was so weak I needed to be helped off the plinth. I was unable to eat properly and anything I did eat went straight through me. I was prescribed a cocktail of drugs to get me to complete the treatment. I still remember some of the music they played while I was lying on the plinth. My first session they played Light my Fire by the Doors- appropriate perhaps for all the radiation. Burn baby burn, disco inferno- probably not their best choice. One year later I still have daily effects. I have developed food intolerances. My bowels and bladder look likely to have long term effects. One year on I still use the plastic pink NHS dilators I was given.
“I think cancer changes you, you find out what is important in life.”
Family and friends are what’s important. I no longer work at a job that I loved and that has been hard, but healing does not happen overnight. But you find new things that help. I love walking now and time in nature has helped me immensely. I have found a love of taking photographs. I have taught myself to knit. I have more time for writing and more time for music. Both of which I love. I need to be creative. I always have. It makes you aware of time, I value it more. It makes you think about doing things now rather than leaving it to an indefinite future. It makes you want to express feelings as life is too short. It makes you aware of your potential impact on others and what you can do for them.
“I have been volunteering with Macmillan for 6 months now.”
I have been humbled to learn of the cancer journeys of some of my fellow Community Champions. They truly are inspirational people who perhaps do not completely realise the impact they have on others. The passing of one lady this year serves as a stark reminder of what we have all been dealing with. She was a special lady who supported me when my journey began and who inspired me to volunteer myself. I still think of her most days.
My motivation is to give back to the community that helped me. That is where Macmillan comes in. It provides information that is relevant and accurate. It provides peer support. Cancer cannot be sugar-coated and some parts are pretty unpleasant, you need to know what to expect. Knowledge brings you some power in the situation and makes you feel more in control. I believe in supporting others sensitively but honestly, in building trust and in holding someone’s hand in their hour of need. Cancer can be scary but it’s important to feel that you do not have to face it alone. It is important to be heard and acknowledged.
“One year on, life has changed but on the whole it’s positive.”
In my experience, you don’t just bounce back from something like this, but you take a small step each day and these build up. If the whole day seems too much, then break it down into hours. It’s surprising how strong you can be and how much you can deal with and that is where the support is so important. Family, friends and Macmillan. It’s what got me where I am today.
Try to find something good in each day. Yes, there are bad parts, but I always try to find something positive even if I have to look really hard. On some days it was just about noticing the little things, a ripple caused by rain on the river, a bumble bee on a thistle or a beautiful rose in a garden. These are things that helped me.
Thank you, Jane, for sharing your reflections about your journey through endometrial cancer and how you are feeling one year after your treatments ended. We are so grateful that you continue to volunteer on the Community as a way of giving back.
Below are some links to further support resources and information and do leave your messages of support for Jane in the comment box below.
