Meet Kathy
Kathy was diagnosed with a rare type of vaginal cancer during the covid-19 pandemic.
"I had a reconstruction which is what causes the nerve pain. I had surgery, lymph node removal, chemotherapy and radiotherapy at the same time, all in the middle of the pandemic. I've never done things by halves all my life.
Kathy now lives with the late effects of pelvic radiotherapy which include chronic fluctuating pain and bladder and bowel problems. This meant she had to leave her job as a teaching assistant for children with special needs.
Keeping well after treatment
“I work hard to keep well. I go to aqua-fit for pain relief, I walk when I can, I eat well, I do my volunteering on cancer projects to keep my mind going, but I still find it challenging to keep well. I do rest too, I'm sensible. Listen to your body, you can't go wrong.
I set myself a goal of 5 hours of movement a week. On a Monday I book my classes in so I have an element of routine. I give myself a bit of a reward sometimes, like a coffee after class.
I make myself get up more or less the same time every day. I don't allow myself to stay in bed, unless I'm really poorly. Even if you just move yourself to the couch, put a bit of music on, just something simple. Keep moving even if it's just walking around your home.
I think if you get the physical health managed as well as possible, it helps with mental health too.”
Dealing with emotions after diagnosis
“I wanted to try and carry on as much as possible as I would normally. I wanted to let cancer fit in with me, adapt into my life, not the other way around. As we know, it's not that simple!
So I think from day one, from diagnosis, it helps if you accept you have got this illness. Try not to change anything that you can't change, deal with what you can deal with, and take one day at a time. But be prepared for change because one week is not the same as the next week.
Don't beat yourself up because you might think ‘this is how I'm going to deal with it’ and change your mind. And some days you just think, ‘I can't do it, cannot do cancer’. It's all normal. You think it's only you who's going through it.
Preparing for treatment and appointments
“I prepared for everything before treatment. I had everything in case I was sick. I had quite an easy ride on the chemo. Forward plan as much as you can, be really prepared, but don't anticipate you're going to get everything, every side effect, because that's not always the case. Sadly, it is sometimes, but it wasn't for me.
Always take a notebook to appointments and prepare your own questions because time's precious and you always leave the consultation thinking, “oh, I should have asked that”. If friends and family are coming with you get them to write their own questions too.
Get your information, but don't be swamped by it. Try not to go Google Mad. A good source is Macmillan's The Cancer Guide. I direct people to that.”
Support after treatment
“You finish your treatment and it's like learning to walk again. I found that very disjointed. Who do I contact? Do I go to my GP? Do I go to the Christie? I felt really in the middle.
They could signpost more at the end of treatment summaries. They could have a QR code at the end of treatment summaries which could direct you to the charities like Macmillan, and the Eve Appeal in my case.”
How Macmillan has helped
I think there's a lot of people out there that probably are not under the radar of Macmillan support or thinking they don't need support, and I was one of them.
If you'd have asked me at the beginning, I'm not a person who would have sought that support. I'd say, ‘no chance. Cancer's not making me go and ask for help, cancer can fit in with me’. But as we know, the reality is a bit different.
Macmillan have been amazing for me. I've had emotional support and practical support. I think the financial support was fantastic because I went on full pay, half pay, then no pay. And I had this PIP (Personal Independence Payment) battle because they said I couldn't be in pain because I could articulate myself, which was just plain nonsense really. I could have just assumed I don't qualify for benefits because I've never claimed them. There are a lot of assumptions when you've worked all your life.
I rang the Macmillan Support Line when I needed emotional support, I just needed someone who was far removed from me emotionally. I was really cheesed off with everything, trying to manage everything. I think I rang them about 3 times in a month. I rabbled on, but it helped move me on. I wasn't made to feel a nuisance, nobody rushed me. It really did help me.
