Radiotherapy progress

I am almost done with five weeks of radiotherapy. I realised I haven’t provided any updates on how I’m doing. I know I don’t owe anyone my medical details – but I’ve made a decision to be public about my experience with cancer and cancer treatment so that the next person with ichthyosis who is diagnosed with cancer (and their dermatologist and oncologist) won’t feel so alone. Because I couldn’t find any info on how chemotherapy and radiotherapy interacts with ichthyosis when I was diagnosed.

I am using my public platform to share my experiences – and I acknowledge that everyone’s cancer experiences and treatment is different, and the same for ichthyosis.

So – how am I after 22 sessions of radiotherapy? Good.

I’ve been doing it each weekday (apart from one Friday which was swapped to a Saturday). I wake up around 6.00 am – which is hard as an arts worker, even harder when I’ve not had to get up before 9.00 am while I was on leave! I’m at the hospital around 8.00 am to have treatment at 8.30 or so – depending on how my bladder behaves.

I was really scared of radiotherapy, especially after the terrible experience I had with my first chemotherapy dose. I didn’t think I’d make it through. But I can do hard things.

Radiotherapy will reduce the risk of the cancer recurring, but there are many side effects. I was really worried about them, especially the impact it might have on my skin.

Fortunately, very few of the side effects have emerged. I have had diarrhoea a few times lately, and in a little tired. My skin has been fine – I already use Dermeze which they give to patients. It was a little scalier than usual for a few days but nothing as bad as it was during chemotherapy.

The hardest things are trying to relax on the bed (it’s hard to relax with my pants down and bladder full – but the staff are so great at reassuring me); and ensuring my bladder is full. Radiotherapy is all about precision – so these things are important. As mentioned previously, even when I drink a lot of water, it goes to my skin. Ichthyosis makes me very dehydrated. So it takes ages to fill my bladder. Drinking warm water helps. It often takes a long time to fill my bladder if it’s hot, or after the weekend.

I keep getting asked if I am very tired – yes, but I don’t know if it’s because I’m getting up early and being back at work, or if it is the radiotherapy.

Every day I get a little appraisal of how my body is responding on the bed – compliments like my bladder is perfect or I’m very gassy.

The staff I see each day are so good – and I’ve come to chat to other patients and their support people in the waiting room.

Two more sessions to go!

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Image: Carly at the NGV, in front of pink spot art and silver balls.

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