Fears about chemotherapy

Hi

I'm sorry to hear how much you're struggling with your treatment and it's natural to be scared that you're going to feel unwell again after this next cycle.

The community has different support groups so I hope you don't mind me suggesting that you also join and post this in the soft tissue sarcoma group where you may find others who have rhabdomyosarcoma.

If this is something that you'd like to do just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'. 

It would be great if you could pop something about your diagnosis and treatment in your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Wishing you all the best with today's treatment.

x

Hi , I’m sorry to hear how your chemo is making you feel. I haven’t had chemo myself but I have had 55 iv’s of immunotherapy. I think it’s harder for people going through things now as pre covid there used to be a sort of friendly lively environment to help people through the experience, and now it’s a bit quieter, and with the spacing there’s less opportunity to chat. I am a Pokemon Go player so sometimes when I’m there I continue playing that or if the cannula is in the wrong arm or hand I just plug in my head phones.

I was wondering what you do ? to make the day more ...I was going to say enjoyable but I’m not sure that’s the right word. I also used to go to a National Trust property on the same day again to have something different to remember the day for, I haven’t been able to do that so it’s been a question of choosing a film to look forward to on getting home. 

It sounds like you are getting totally overwhelmed by it all, I used to get panic attacks at work and loose control of my breathing, so I can understand some of what you are feeling, I think that’s why when I had my diagnosis I tended to break things down into chunks, I wrote my worries in a worry book then when worrying rose again went for the book, I then found that I was just going over the same worries, nothing more to add, I then looked to see if there was anything I could do for each worry or wether I just had to acknowledge it and let it go. (I’d had counselling for anxiety before and so I looked back at all my old methods of coping to do this) I wondered if counselling is something that would help or be something to explore, perhaps through at first talking to your specialist nurse if you have one for suggestions of where to approach, I’m thinking a local Maggies centre if you have one, or as you are under 24 there is often further help available from charities aiming at that age group.

Tiredness I have that for a few days after each iv, so I’ve learnt to pace myself. Sickness I had at the start of my illness but not as part of my treatment, and they changed my sickness meds as the ones I was on wasn’t helping, but I think I was also aware that the sickness can come from anxiety as well as the meds themselves, it may be worth talking to your team to see if there is anything they can tweet for you. I did find that when I was having anxiety at work (fear of attack, or fear after coping with what could have been much worse) I felt like something was wrong with me to have anxiety when other people didn’t have the same worries, when I had cancer and was told I might only have less than 12 months I gave myself some slack, and decided that most people would feel anxious getting that news, so I hope you can feel kind to yourself for feeling like you currently do, and I hope you find a way through it. 

My usual way of coping was exercise, which is hard to do if you are feeling tired and also sick, and I had times when I knew it couldn’t be my method either, like during self isolation, although I did by an exercise bike to have at home. I started looking into mindfulness, I had previously poo pooed it because it actually made my anxiety worse sometimes, when you have trouble breathing and your asked to concentrate on breathing it made me remember the panic attacks I’d previously had which was not relaxing. I came back to it though and it’s not something I practice a lot but it’s something I now feel I have in my tool box. I experienced it through a Macmillan course through my local cancer centre, and through Headspace on Netflix. Mindfulness is sometimes about just thinking in the moment not racing ahead with worries, I found when Worries start trying to flood in you can’t always ignore them but you can acknowledge they are there but not to be worried about now just let them go, and if they are not wanting to go away I need to either find a distraction something else to occupy me, or to slow things down and do a visualisation of being calm, I visualised either an actual walk I’d been on or an imaginary even better one.

i hope you find what works for you, and I’m sorry my reply wasn’t in time for your last session, which I hope went well, 

If you can break down what things you need help with into smaller chunks there might be people in the community that can help with what they do to help themselves with there little chunks. I think you have tried to do that but I’m not sure if I’ve got it right from my reply which has been rather too long !