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 .
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 donât feel pressured into doing anything youâre uncomfortable with, and equally that you donât 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 donât 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 wouldnât call that selfish!
Best wishes, Lauran
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 donât think my reply is especially helpful, but I just wanted you to know that you are not alone! x
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.
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 peopleâs 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, everyoneâs situations are unique, but it is an absolutely great topic to raise, thanks so much.
Look after yourselves.
No you are not being selfish at all
Hi all
My husband was diagnosed with ALL just 2 weeks ago with no build up. Just took poorly at work and was taken to A&E by his first aider. 4 hours later he had the diagnosis he is a young 63 year old. Old enough to be treated with the more âgentleâ plan with all the risk markers age brings.
He has just started his chemo and is being managed as an outpatient after 10 days in hospital.
I have a full time job and am able to do lots of it from home. My job and background give me a very clear understanding of risk and benefit. We have discussed that as the future is uncertain we need to live through the treatment not put absolutely everything on hold. We are being sensible and he is isolating at home except for his hospital visits. I do what I need to to meet both our physical requirements and mental health needs both at home and out and about. I am also a year in remission following successful breast cancer treatment.
Its going to be a long road but as with most journeys sometimes its important to stop and enjoy where you are.
Good luck everyone. X
Hi @Debbie36 I am so glad that you have found us, you must both still be in shock.
You sound as if you are working as a supportive team which is brilliant.
I was diagnosed 18 yrs ago at 53 yrs old on 16 Dec.
Your unfortunate breast cancer journey experience will prove so valuable.
I absolutely loved what you said about it being so important to stop and enjoy where you are.
I was far more materialistic before diagnosis but now the best things in life are free like good health, happiness, family and friends, music, nature, architecture etc.
Look after yourself as well as you look after you husband, spoil yourselves and be kind your yourselves.
This forum and the Blood Cancer UK support line are here for you both and please keep posting as I would really like to hear more about you.
I was really interested in reading this thread and found I valued the different approaches we all take. Iâve been on this path with my husband now for 6 yrs and my life in no way resembles what it used to be. And thatâs just pre covid. I was ok with the changes as anything was worth having him still here and ensuring I did all I could to help and support. But it has come at a considerable cost to my own health and wellbeing. Covid has been a really different experience tho - March 20 saw his consultant tell me I was his shield and my actions would be the difference between life and death so I have, in essence, stayed home. Iâm able to work from home as is he but I have chosen to not go out or do anything. I wouldnât say it works as such but, for me, it has felt like the only option. There is nothing else more important than his safety- no shopping trip, socialising, no holiday, no night out to cinema etc is worth the risk for him, for us. But thatâs totally individual to us and I love that others have felt able to make different choices. We all have our own stories but for us, his sudden diagnosis and initial prognosis of death within 4 weeks meant I watched him fade away those days and then I watched his team fight to save him or buy him time. Having been a part of that picture and had to process that potential as quickly as I had to, I hope you can understand I donât want to willingly (not the best word but the only one I can think of) put ourselves back there again. I could not cope with being the reason. To all of you who care for their loved one, I see you and appreciate how hard it can feel. You are not alone. Best wishes
To @judesadventures @Debbie36 @Mayo57 @summer123 @SueD I always think and say that partners, carers and children etc. are the unsung heroes and the family go through similar fears, emotions, thoughts and practicalities.
I remember when I was looking after my husband, under different circumstances, and it was my birthday and I was so exhausted and at my lowest point. Some friends of ours arrived and handed me a box of chocolates, I was so grateful and they looked at each other and said that they were not for me but for my husband. As soon as they left I just collapsed and burst into tears.
I live with my husband and I have Chronic lymphocytic leukaemia (CLL). I have been isolating here since Mar 20.
My husband is my âdanger pointâ. He is very good and can work from home and goes into the organisations he works for on Sundays when no one is there. He does collect our prescriptions and get odd bits in town.
Apart from that he has only seen his family once since Mar 20 so his life is really affected too.
Again we donât see our son because he works at the local Uni and is high risk for me, in fact he tested positive for Covid just before Christmas, he is healthy and has had his 3 Covid vaccinations.
Everyone thinks about me, but not my husband and our wider families.
Thanks so much to every âcarerâ out there, you are selfless stars.
Thank you for sharing your experience. As I said in my post these are very early days for my husband and myself with his diagnosis. It is helpful for me to hear the thoughts of others who have been where we are and I am extremely grateful to you.
It sounds like its been a really tough time for you and your family.
During the first and second lockdown I was a manager in social care where covid was a real and present danger to those I cared for as well as my staff team for months and months. Standing toe to toe with that risk daily has make me respectful of its potential to cause havoc but also how it can rob us ( thats the royal us ) of opportunities to continue to live our best lives and make great memories. I also lost my ex husband to dementia and covid last Christmas so know how important it was for my family to find ways to make memories.
I am also not so nieve enough to think that my opinion may not change as our situation develops.
I absolutely respect that others have been compelled to make different choices when faced with these very difficult circumstances we find ourselves in.
Its good to know there is a safe space to share thoughts and feelings with those who understand. Thanks again.
Hi @Debbie36 this is a safe space just to be you and say how it is for you.
Who knows how Covid will be in 2022 and how will we âlearn to live with itâ.
The saying âkeep it in the dayâ becomes more and more apt.
The main thing is to be kind and look after yourselves, I found I was in shock for ages.
We are here and perhaps sometimes as a sounding board or I have found just typing things out sort of diffuses or clarifies them.
Look after yourselves
Thank you @Erica thats very kind of you. Christmas hasnât been as hard as I expected, in some way its helped that everyone is being more cautious about the new variant.
My husband has had a two week break from his consolidation stage of treatment as he bloods were very low so they are giving him time for them to recover. We hopefully re-start chemo tomorrow. He has felt really well and we did spend a lovely Christmas day with my daughter, son in law, son and granddaughter, a risk I know but everyone took Covid tests, had temperatures taken and daughter really good about hygiene. Husband was adamant he wanted a Christmas to remember with our baby granddaughter and when he asked his consultant she said âwhy notâ as long as we took his temperature and called his hospital ward if high. He has been fine.
I feel as though we are back on the treadmill tomorrow, I seem to have been able to put it all at the back of my mind for the last few days.
Hi @summer123 I am impressed that you took every safety measure you could over Christmas. What lovely memories with your family.
Being able to put it all to the back of your mind is good, even if only for the last few days.
Perhaps it is back on the treadmill tomorrow, but memories are priceless.
Look after yourselves and please keep posting.
Hi everyone, I have just seen this discussion, thank you @summer123 for starting it. Iâve realised how much I can relate to many of your experiences. My husband was diagnosed with ET fourteen years ago, it has been well managed by him taking Hydroxycarbamide daily. He was also diagnosed with low grade prostate cancer five years ago and has been on active surveillance. Like all of you, our lives have changed so much since Covid. At the start of the pandemic we both shielded, in fact we did very little until we had been vaccinated. I suffer from anxiety which was really triggered by Covid and at that point was too worried about meeting people incase I picked up the virus and passed it on to my husband. In May this year, after we had both been double jabbed, we started to get out more. We enjoyed a lovely couple of months went away for a short walking holiday and met up for walks with some friends. However things changed after restrictions were relaxed as we did not feel so comfortable going out to places. Then in September my husband had a course of radiotherapy for his prostate cancer as his PSA level had been gradually going up. This has meant that we were very restricted again at a time when it felt as if the rest of the country seemed to have forgotten all about the virus! However my husbandâs follow up results from the radiotherapy brought us some good news although weâre aware that itâs early days yet. However his red and white cells were lowered after the radiotherapy but we have an appointment with the haematologist in January.
So many things which have been written by all of you in this discussion have really resonated with me. In August I went through a very low period, feeling very anxious, quite isolated
and also angry. As the rest of the year has gone on, and after his radiotherapy, both my husband and myself have been focusing on gradually doing more while still taking all possible safety measures. In fact it was my husband who said he felt my anxiety was affecting both of our abilities to enjoy our life together. Like you said @SueD I realised for me that it was essential to find a balance and that our physical and mental healths were both important. I also agree with you @Debbie36 when you said itâs important to stop and enjoy where we are. This pandemic has been a dreadful time for so many of us, yet I do feel in slowing down I am much more aware of the important things in life, the beauty of nature and those people in our lives who have been genuinely supportive.
Thank you @Erica for your kind words to all carers, youâre right it does give me a lift when people ask how I am.
@summer123, Iâm glad you and your husband had a lovely Christmas with your family. I wish everyone improving health and happiness in 2022.
Hi @Kirsteen I think so many of us will relate to your post and feelings, thanks so much, it is a great comfort to know that I am not the only one.
You and your husband seem to be getting a good safe balance of behaviours.
Donât forget we are here to support you during your low periods
It does feel as if we have been forgotten sometimes, but we have each other on our forum and Blood Cancer UK looking after yourself.
Be kind to yourselves and please keep posting.