Your experiences of being a carer

Caring & supporting a loved one with blood cancer
#1

This is a space for anyone to share how they’re feeling, as a carer, during this time. It might be that you’re caring for someone who is shielding, or perhaps you usually help to care for someone you haven’t been able to see during this time. Whatever your situation, please feel free to share any thoughts and feelings you have here, and also, what you’re finding helpful and supportive during this uncertain and difficult time.

Don’t forget we’ve got a page specifically for people whose loved one has blood cancer, which you can find here Our support line is here for you too, at support@bloodcancer.org.uk and on 0808 2080 888

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#2

In a word…scared.

Scared about so many things to do with my toddler’s leukaemia, but in particular at this moment in time any thoughts about lifting lockdown/easing shielding absolutely petrifies me.

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#3

Your reaction is one shared by many on the forum. How is treatment for your toddler going? Have the family been offered counselling or other help? If you need to share with others who have looked after children with blood cancers there are topics on the forum…click on the 3 lines at the top and you will find them there. There is also information on the Blood Cancer UK website, and a listening ear on the support line. Be kind to yourself and stay safe. I hope all turns out well

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#4

Gosh @MrsAJO I can only imagine how tough this must all be for you, I’m so sorry you’re having to go through such a worrying time. May I ask how your toddler is getting on? Have you got much support around you?

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#5

He’s currently half way through Delayed Intensification. The treatment post-induction was delayed for a couple of months as he contracted chickenpox (from hospital!) and ended up in ICU. We’ve got our CLIC Sargent social worker and our Oncology team but that’s about it really

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#6

Hi @MrsAJO, I am not surprised that you are scared about so many things and petrified. I am not a medical person, but I have found my emotions are heightened in lockdown, I have too much time to think and it is something I am not in control of on any level. Then you have your caring emotions, being out of control again and probably strongest of all your maternal instincts. We are all here to support you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk if you need to talk. Keep posting, be kind to yourselves and have the odd treats.

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#7

What a time you are all having. I do hope that things improve. Lean on anybody who offers help or a shoulder to cry on. You cannot always stay strong. We are here for you xx

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#8
#9

@MrsAJO I can only begin to imagine how scary it must be for you. As I’ve said in another post my son has now finished treatment, but I’ve still been nervous for him and have often thought how scary it must be for those with children on treatment.

I don’t know what your situation is with work etc, but please don’t feel rushed in easing your own lockdown. I think everyone has to do what they are comfortable with, as far as they are able to, for themselves and their family. We are certainly still keeping our son indoors much of the time and decided not to send his big brother back to school.

Do you mind me asking which hospital you are under? (We are GOSH).

I hope he is doing as well as can be expected xx

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#10
#11

Hi @MrsAJO may I ask how you’re doing and how your son is getting on. I really hope his treatment is going as well as it can for him. Take care

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