Lonely and living in fear on chemo

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Hi everyone. Is anyone else feeling lonely on chemo? I have low white blood cells and trying my best to avoid infection. This means steering clear of my two small children, who have had constant colds and bugs since December. I miss them so much! Am feeling so lonely and scared to go out and do anything. My world has become so small. I have a lovely support network but spend most of my time alone in the bedroom with the door shut. I feel like I’m living in constant fear. I’ve had several trips to A&E with infections during the course of the chemo plus delays in cycles due to catching bugs from the family. I understand the reasons for the A&E/chemo nurses joining the strike in early March but this makes me feel even more fearful. How will oncological emergencies be dealt with? Sorry, just a massive whinge from me today. Xxx

CrumpetsOrToast over 2 years ago

Oh Ali123 - you are not alone. You have us here. Sorry you're feeling how you do.

I considered stopping chemo due to resource issues and service inaccessibility in my areas, which were present before strikes but now magnified further.

However, for me when i looked at prognosis with or without chemo, i decided to stay on it for now. But i do heavily manage exposure risk as i'm very aware of my non-existent immune system.

Are there any outdoor activities you can do with friends and family to keep you engaged? And some online courses that have group peer group?

Kareno62 over 2 years ago

Hi Ali123 I’m sorry to read that you’re feeling like this. Have you chatted this through with your oncologist? Having to avoid your own children must be hard for both them and you and I wondered if you could compromise by wearing a mask, taking them to the park so you’re outdoors, playing in the garden? I totally understand your fear of infection but I’m also concerned that this anxiety could escalate into depression and isolating will make it worse.

There’s absolutely no need to apologise for having a whinge - the board is always here for you regardless of your reason for posting. Please give the support desk a ring in the number below and have a chat with them - they are very good listeners and may have some ideas for helping you through this?

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Ali123 over 2 years ago in reply to Kareno62

Thank you both for your kind responses. It definitely helps to know that this forum is here and that I’m not alone. I do try to do the school run with the kids when I’m physically well enough, but that’s a good suggestion to take them to the park and do activities outside, especially now the weather is improving:)

I go for walks with friends sometimes, which is always nice. Again, hopefully can do more of this as we head into spring.

It’s hard to balance the fear of infection with enjoying life. It’s so disappointing when chemo is cancelled due to illness and I am scared of having to go into A&E. I need to learn to live with the fear somehow and make the best of this situation. I didn’t realise how isolating chemo could be before I started - I only considered the physical effects.

I may give the Careline a call - thanks for the suggestion. X