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Question for carers

My husband was diagnosed with ALL in July following a seizure, he is currently in hospital having the second stage of intensification treatment. He is doing well, few side effects from the chemotherapy other than chronic gout, joint pain and fatigue.But we know its a long road for both of usand I have to keep well for him.
On another facebook forum for ALL patients a question was asked wether someone whose partner was going through chemotherapy should go to her best friends wedding in another city. People were divided from her being selfish to going with precautions. I read that some carers had never left the house since diagnosis other than hospital appointments.Other people had to hold down full time jobs to keep households going.
My question is how do other carers manage their lives, with my husbands encouragement I still go to a weekly pilates class, the teacher a friend of mine insists everyone sanitises hands before going into room, windows are open and everyone wears a mask until onto own mat.I meet a friend occasionally for coffee and my daughter has taken me out for lunch a couple of times, she is taking me out to lunch today.I have been shopping quite a few times always wearing a mask and sanitising.I have also agreed to go on a Santa train ( in a private carriage) with my daughter and granddaughter next month.
Am I being selfish, should I not go out at all .

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Hi Summer123,
A santa train sounds nothing short of wonderful! Thanks for putting this topic out there as it is understandably very difficult to navigate & one i feel many people can relate to. It sounds like you have very carefully & considerately put your husband at the forefront of all your decisions and that is amazing! It really is finding a balance & managing your own risk.
Whatever you choose to do, make sure that you feel comfortable with your own decisions - that you don’t feel pressured into doing anything you’re uncomfortable with, and equally that you don’t feel guilty about doing things that are important to you.

There are things you can think about, to help you make decisions. Not all risks are equal.
The risk is lower if:

  • People you spend time with have been vaccinated
  • Coronavirus rates in your area are low
  • You meet people outdoors rather than indoors
  • If indoors, you have doors or windows open, so there is good ventilation
  • You wear a face mask
  • You keep the number of different people you see low - can you prioritise who you see for a bit longer?
  • The people you choose to see are not mixing widely themselves.
  • You don’t share food, cutlery, tea towels, bath/hand towels, or other things that touch your face.
    Summer123 it really seems that you have taken into account the above and been very mindful of potential risks. Finding the correct balance is so very difficult for our blood cancer community.
    I certainly wouldn’t call that selfish!
    Best wishes, Lauran
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Hi summer123,
I really feel your dilemma! My husband is recently diagnosed with High Risk Myelodysplastic syndrome (MDS) and is adamant that the impact on me should be minimised, which is very lovely of him but totally unrealistic. I have quite an active life - I do several volunteer shifts, sing in a choir, attend singing lessons etc etc etc. I am perfectly happy to give it all up to support him, but the very suggestion of dropping even one activity causes him more stress than is comfortable for either of us.
At the moment I am taking it day by day - the level of fatigue he is experiencing has ensured that I have had to modify things anyway, in order to take him to his appointments etc.
Somehow, I think that both you and I need to find a balance, and Lauran has given some great advice and useful tips. We are certainly walking a tightrope!
I don’t think my reply is especially helpful, but I just wanted you to know that you are not alone! x

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Hi Sue, thank you very much for replying. Your reply was useful just understanding I am not alone and other people are in this dilemma Life is not normal in any way but he says if me doing normal ( but safe) things helps with my mental health then that will help him. The same as your husband his fatigue is a struggle to manage appointments but also quite lonely for me. I think we are at the start of a long journey and we will learn how to adjust and cope better as the weeks go on but as you say Laurens advise was helpful.

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Hi @summer123 I know this is a question for carers, but I wanted to reply. as a patient.
Hopefully you and your husband can honestly discuss and agree what you both think is best for both for the 2 of you, and also your relationship, without taking external people’s emotional pulls and situations into account.
Lauran from Blood Cancer UK has given you good advice to think about.
I have to remember that the general public are listening to the government opening up of restrictions, whilst not mentioning the Clinically Extremely Vulnerable, we are listening to the medical profession and Blood Cancer UK advice.
As you have found everyone looks at this issue differently, but I trust that nobody would ever call another person selfish on here.
My sister in law is very ill with another illness and very weak, She has carers 4 times a day, occupational health, social services, district nurses, medical people, family, friends, people from her church, bell ringers, work, deliveries etc. etc. All of which could be classed as high risk, is that right or wrong???
I am still isolating apart from a morning walk and medical appointments.
My husband goes to Sainsburys for bits, picks up prescriptions and goes into an office once a week. He has also started to attend the odd meeting.
Very personally we need space from each other sometimes and it also gives us things to talk about. We are both happy with this balance and there are no resentments.
We never had a big social life or a big family and did not go out in the evenings, there was one annual dinner that my husband goes to on his own and we are both happy with this.
Pre Covid I was the one with the social life, a lady that lunched or went out for coffee with friends. I also did a lot of classes at the gym, which we were both happy with.
Perhaps since Covid we are both much more aware of sanitising and hand washing and are converted to mask wearing.
I have rambled, but what I wanted to show is that perhaps there are no answers, everyone’s situations are unique, but it is an absolutely great topic to raise, thanks so much.
Look after yourselves.

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No you are not being selfish at all

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