Hey everyone, haven’t posted in a while but wanted to share an update. My OH (Acute Myeloid Leukaemia diagnosed Jan 2021) was declared terminal in September last year, caught and survived covid and is now 4 months into a drug trial. He seems quite stable at present but the bone marrow biopsy he had today will tell it’s own story.
We all know life for those with compromised immune systems is going to be a huge challenge now that life is allowed to continue unrestricted.
Navigating the last 2 years has been a bl**dy nightmare at times (I can see everyone nodding) and there’s been lots of things we obviously couldn’t do but we have managed to steer our way around without locking ourselves away. Like many others we had our social life outside during the warmer months but then came winter and the fear of multiple germs swilling around indoors, so we stayed home. During the last few weeks, having got Christmas over and with a family member visiting from Canada and a birthday we have had to think about how we can have a life and still minimise the risk. So, now when we have a hotel stay (we had to abandon holidays abroad when the picc line went in), or when we go out for a meal we pick places with plenty of space and I have no qualms in explaining that due to my husbands health we would like to sit on the edges rather than in the middle of the restaurant. So far the staff in restaurants have been brilliant at accommodating our needs and have been perfectly understanding of our situation.
I expect lots of people have found their own way around life but I still see and hear of lots who are really afraid to venture out and that’s such a shame. Not saying this is what you should do, but just that there are possibilities. Let’s hope the coming months are better.
Hi @CathyG thanks so much for your updating post and showing your navigation of the outside world as we move to ‘living with Covid’.
You have been more adventurous than me, I am still at the just going out for my morning walk and to medical appointments stage.
I am waiting to see what the opening up of restrictions does to the Covid numbers.
Then I hope as spring is springing I will dip my toe in the waters of the outside world.
After 2 yrs of wearing leggings I wonder if I will fit into my jeans !!!
Look after yourselves
I await hearing from others
Hi @CathyG. Great to hear from you. It sounds as though you are navigating things really well, taking in to account the risks. I - like you - have started doing more and find places are really accommodating. All we can do is what we feel comfortable with. It’s nice to hear that you are starting to enjoy doing things again X
Hi CathyG, thank you for adding your post. I think you are right to venture out a bit. We need quality of life too. My husband and I went for a meal today for the first time since he was diagnosed in December. There were only three other couples in the restaurant. I was nervous though, and my mind was going into overdrive but tried to pull back and just enjoy our time together. He said it felt really good to do something normal as he has been in and out of hospital since diagnosis. Hoping the covid numbers go down come the spring and we maybe get out a wee bit more xx
I decided a while ago, that I need to treat this like the flu, otherwise the rest of my life will be left imagining bugs everywhere
So, if I see anyone with flu like coughs etc, then I will try to keep clear, otherwise, I won’t worry when out and about.
I am sure I will get it at some time, as most of us will, so I am not spending any more time hiding away or worrying about getting it.
…I do have a backup plan for when I do get it.
I take lateral flows twice a week, (or if I ever get symptoms) and I have a 24 hour hospital phone number to call, so I can get antivirals, if I test positive.
I have had all the jabs that are available.
…I keep my eye on developments, and If something else comes up, which looks good to add to my backup plan, then I will add it, but I can only do what I can do, and let the virus do it’s worst!
Life is for living.
My 92 year old mother has the same approach. My mum currently has 3 carers a day, and has written in her living will, that she refuses to go to a care home, as she will not live with the restrictions they have imposed on people - she currently has 3 carers a day at home, but can go out to coffee mornings and lunches, and shopping down the road - in her electric wheelchair.
Mum has a hairdresser visit to do cut and perm her hair and colour in a pink stripe.
Go for it mum! - an inspiration.
Dear @CathyG, thank you so much for posting and I know you words will be really meaningful to our forum members. The importance of doing what is comfortable for you can be really helpful when considering how manage ‘life’ at the moment and to ask for adapations from others too. Our webpages Coping with the lifting of restrictions | Blood Cancer UK include the advice you give and the steps we are pushing forward to try and help our community. Please do take care and thanks again for posting. Gemma
Hi @heatherthomas I am coming round to your thinking and like spring I will pop out soon.
Your mum sure is an inspiration isn’t she !!!
Your mum is most certainly an inspiration to us all.
With Chronic lymphocytic leukaemia (CLL) which is being treatment, I feel more optimistic of the future. Having lost two years of our retirement plans, we now feel that once my bloods are in the 'normal ’ range we shall attempt to travel again. We shall equip ourselves with N95 masks (if we can find in the UK), take wipes and sprays with us. We do go out for walks but rarely have coffees anywhere (we take a flask) and we are reluctant to use public toilets, laugh if you need but often travel home with legs crossed!
We are happy to stay in the UK during in the summer (we live in a seaside town and love our gardens.) I think the immunosuppressed are always going to be vulnerable but we aren’t getting any younger and this life is not a rehearsal.
Oh @Kitchengardener2 life sure is not a rehearsal
I had to laugh about your toilet dilemma, I know it so well. I got for my walk in the morning and when I get back it is that key in the door moment for me.
Please do let us know your travel plans as I am living holidays vicariously through others at the moment. There are so many places I would still like to visit in the UK.
Look after yourself
We’ve all been left with no choice but to find our own path that makes us feel comfortable and enjoy what we can within those parameters. For me, it isn’t in my nature to shut myself away and I couldn’t contemplate that. I need to get on with things. Shielding was hideous and I’ve no desire to go back to that.
Hi Heatherthomas…I like your attitude, and everything you say is right. I had the same until hubby was diagnosed two months ago and now I’m terrified of bringing covid to him but we did venture out for lunch on a quiet day and it felt great. So, I’m working on myself!!..Fantastic to hear about your mum. Life is for living as you said and your mum is an inspiration. My mum is in a care home and its been a huge battle trying to get to see her over the past two years. Loving that she has a pink stripe xx
I think people who care a lot for others that have illnesses, sometimes are more protective of them, than the person is of themselves,
It is a very natural reaction, to try to protect the people we love, and a fine balancing line between protection, and overprotection, I hope we can all get the balance right.
It’s good to take small steps, to see what you are both comfortable with, and I hope you can keep going forwards together., and hopefully you can get to see your mum more often now too.
I agree @heatherthomas. It’s Amhara for us and the people around us. It’s a journey for us all, sometimes learning as we go along x
That is a really good point @heatherthomas and @Catpat it sounds as if we are all ‘carers for others’ and what is that balance between protection and over protection especially exacerbated by Covid times and extra isolation together.
There is a saying about ‘killing with kindness’ isn’t there.
I can also see how important it is getting a physiological boost from actually starting to safely integrate back into normality.
It is a dilemma and it has to come down to individual choice of what we are most comfortable with, I think.
Yeah it is getting the balance right but I am finding it a bit of a struggle . I am back in seeing mum in the carehome but they have recently had staff testing positive for covid so I have had to miss some visits until mum has been tested. It seems never ending … …I try and rationalise it all and say well, hubby is in getting chemo two days a week in a day ward with lots of other people and nurses who will be living a normal life so if I go for a coffee with a friend it shouldnt be a major deal!! Anyway, baby steps and we will get there. Wishing everyone on here the confidence to keep moving forward. Spring is on the way Erica, look forward to hearing what you get up too. xx
Coffee with a friend is lovely - If it’s a major deal, it should be because it’s a great thing to do, and you’ll really enjoy it - so I think you should enjoy having a coffee with your friend, relax, and smile.
Now the sun is shining you’ll be able to coffee outside. Just what you’re comfortable with Bit a good chat and a coffee always cheers me up X
@heatherthomas - you are so right. I’m much more protective of my husband than he is of himself - he tells me off for fussing sometimes. I’m trying to relax more on that level.
Hi Erica, it’s called doorstep incontinence and many ladies of ‘certain ages’ suffer. However funny it is, I am so reluctant to use public loos. It’s easier for men and if I really am desperate it takes me ages, spreading loo paper all over the seat, using paper to flush and open the door and then a really good hand-wash. When we went to the Far East, I took some paper covers for the toilets (think i got them from B&M) and I always have sanitisers in my bag/pocket. This for me is the future. Stay safe Alice x
It’s the only time I wish I was a man @Kitchengardener2. Life would definitely be easier wouldn’t it 
toilet seat covers sound like a great idea!