CLL, infections and a working partner

[Leigh65]

Hello Dear Blood Cancer Friends

Am hoping all is as well as can be for you, and that you’re enjoying the cooler temps (if in the UK).

I might have mentioned before that I am a real winter girl, I do love the cosy! However, this year I seem to be feeling quite overwhelmed about the prospect of moving into winter because of infections. It might only be October but I’m already fretting about it.

There is some background to this… For the past few years (prior to my diagnosis of watch and wait Chronic lymphocytic leukaemia ('Chronic lymphocytic leukaemia ('CLL')') in 2024) my DP has effectively WFH in a friend’s garden cabin which has worked out very well. However, the friend is no longer able to offer the cabin and so my DP will have to go back full time into the office. I seem to be getting extremely anxious about this, in terms of coming into contact with a million second hand bugs (I picked up Covid twice this way back in 22/23). I think I feel especially bad as its out of my control, I mean, my DP has to go to work and as is younger than me, this scenario is going to run and run whatever my health is doing. DP is quite cavalier really, says that I’m ‘early stage’ and ‘will be fine’! I certainly dont feel like that. Its becoming quite a bone of contention between us

I would like to know how others cope, maybe you don’t have a working partner but you do have grandkids who visit over winter and or a major Xmas social calendar. Or does everyone just pull up the drawbridge for months?! I feel there has to be a different, more sensible perspective/approach to take, but I’m not sure what it is. Would be great to get some other takes on this.

Thankyou!

[Ceri_BloodCancerUK]

Hi @Leigh65, I’m more of an autumn girl myself, but I second the love of the cosy, and I really feel this one. It’s unfair to be looking forward to the colder months and then having them arrive with a huge side order of worry!

I can speak to this from personal experience as well as from the staff side. I’ve been in remission for a few years now but I’m still immunocompromised, and I wrestle with this every single year (and it has already started this year!). My husband works in a hospital lab and we have a 4 year old, so bugs coming into the house from outside is very much our reality too, and I know that feeling of it being out of your hands.

A few things that have helped us: if my husband has been around a colleague who’s unwell, or he starts feeling even slightly under the weather, we sleep separately until it’s passed. If he’s properly ill (as he is right now, as it happens), he wears a mask around the house when I’m near him. We also keep separate hand towels, wipe down door/tap/fridge etc handles. I am also never without one of these attached to my belt loop!

None of it is foolproof, but having a plan we’ve agreed on in advance means I’m not starting from scratch every time someone sniffs, and that takes a surprising amount of the fretting out of it.

On the “different, more sensible perspective” you mentioned, we have some information on making balanced decisions about infection risk that might help. It talks about weighing up risk alongside the things that matter to you, and suggests starting by asking your hospital team or GP about your own personal level of risk, which can make it easier to work out where your lines are. There’s also a page within our living with infection risk section written for family and friends of someone at risk of infection, which might be something to share with your DP if it would help you both get on the same page.

Hope that’s all helpful Looking forward to seeing what other forum members advise, as I could do with more tips and tricks myself!

Take care,
Ceri - Blood Cancer UK Support Services

[DuncanB]

Hi @Leigh65

This is a very difficult situation and I’m sorry to hear it is becoming a bone of contention between you and your DP.

I’m lucky that both my wife and I decided to retire early about 6 months before I received my diagnosis.

There’s a few folks on the forum who’s partners had to go out to work, sometimes in bug heavy environments such as @Spangleystar

I know @Byrnebaby also had her partner out at work too.

From my perspective, it’s about taking balanced risks. For me that means avoiding busy, crowded places and wearing a mask when around others in shops and confined spaces.

When I’m in at the hospital I wear a mask if someone is doing a treatment very close to me like a Venesection.

What you could suggest to your DP that he lets colleagues know that he is supporting you through blood cancer and to be alert to those at work who might have colds or bugs.

Maybe also ask him if he could carry hand gel so that he can use whilst at work.

Hope that helps and I see the lovely @Ceri_BloodCancerUK has just replied with her personal experience.

Take care

[Byrnebaby]

Hi @Leigh65 thanks @DuncanB , I’m day 106 post stem cell transplant, my husband works 5 days a week in a holiday camp, so germs a plenty, he has worked every week since I got home on day 14, in fact went back to work that afternoon , I, as anyone will tell you have been petrified at the thought of germs an infections, but so far so good, since being home up until my 100 days, when cleaning and hoovering I’ve masked, I only mask to do the bathroom now, I’ve been going shopping since week 3. I got at 7am masked, but I’ve always shopped at time, even when I wasn’t aware of having myeloma, hubby has had 1 cold since I’ve been home, and it was far easier for me to mask, than make him more uncomfy with cold and hayfever symptoms, but I only masked in the car going shopping, I had an air purifier running and sat the other side of the room, slept in same bed but faced away from each other, and when he did anything in the kitchen I wiped down after him, going into winter I’m not too worried, my grown-up kids are sensible and won’t visit if they are ill, I mask to go to hospital appts, but been very lucky since Stem cell transplant as they didn’t want me going in, that changes next week when I get my results and start on treatment again but I’m just going to do Covid rules, mask and sanitise hands until I’ve had all my baby jabs and flu jab, I’m not sure how different your illness is to mine, but I’m going to try and live as normal but aware as possible

[Spangleystar]

Hi @Leigh65 tricky one - I have teenagers at school and a primary teacher husband and am on consolidation treatment after a stem cell transplant so my immune system is non existent! I’m not even allowed the childhood routine immunisations until May 2027.

That said so far so good (touching wood here) I’ve avoided everything those grubby little urchins have brought home. Ceri’s advice is exactly what I do - any signs of illness they stay away! Sanitiser is everywhere, plus bleach spraying all light switches, door knobs etc etc.

I think there’s another discussion that you may benefit from having with your DP around the playing it down. It’s not helpful to make you feel like it’s no big deal, you are not over reacting, you are trying to stay well. Minimising your diagnosis may be his way of coping, because it feels big for all of us as well as the people in our lives, but he needs to follow your lead and make sure you are comfortable.

Good luck lovely, keep us posted xx

[Erica]

Oh @Leigh65 I certainly cannot better the replies from @Ceri_BloodCancerUK @DuncanB and @Byrnebaby @Spangleystar and agree with all they have said.

I have had Chronic lymphocytic leukaemia ('CLL') for 22 yrs so perhaps my stress levels have calmed down a bit over the years and it took Covid for my husband to change his ways and he followed Government advice, I think to actually protect himself, not me !!! I was isolating for ages so I did tell him that he was my danger point,

However when we were allowed out of isolation I did go out, in fresh air and in uncrowded environments with mask and care, as I wanted to get a bit of natural immunity and I think it has helped me.

My son works in a University and as the students have started arriving there are bugs flying around everywhere, so he won’t be coming round for a few weeks and I don’t see friends when they have lurgies. I reckon my biggest risk now is visiting my GP or hospital !!

I cannot control my husband, we have been married for many years, and all he can do is see things from his perspective, all I can do is try and protect myself. I find bones of contention do escalate and that does not help my strass levels.

Hidden conditions are so difficult and I look healthy and have a smile on my face.

Oh, I love the winter, out comes my snuggly, honey monster onesie.

These are just my very personal experiences.

[Duncan]

Hello there @Leigh65, another great topic you’ve posed here. I’m totally more of a cooler temperature person too, quite why I ended up where I did remains a mystery! It’s finally cool enough for me to crack out my scarves

You’ve had so many really interesting, personal, in-depth responses that are great to get tips from for my own ‘risk assessment’ with my partner and other loved ones. Thanks folks!

I think since the pandemic we figured out that my partner’s public-facing museum work meant he would be more at risk of bringing home viral lurgies, and indeed he did many times! So generous. We quickly learnt that when he’d been around someone ill or felt sniffly himself he’d mask up around our home and stay separately in another room, and somehow to this day I’ve never caught COVID-19.

Something else that I’ve kept doing since the pandemic is carrying around a hand-made hand sanitiser, although I love the one @Ceri_BloodCancerUK shared and I imagine any type is better than none. I make a little rubbing alcohol + lavender oil + splash of water mixture and carry that in a reusable spray bottle. Handy for having at hand after tending to my dog’s ablutions, or using public transport, after pressing buttons on an ATM etc.

Something I tell myself living with a chronic disorder like you is that it may weaken our immunities but that do we still have immune systems and can strengthen and protect them in what we eat, how active we can be, keeping stress to a minimum, all that stuff that we know can deplete energy.

We can’t make our partners change, but we can show them how we look after our self-care and what we need to stay healthy and as risk-free as possible. I think of it as being like my health boundaries and gently remind my partner and friends of them as necessary.

Actually, I’ve stopped hanging out with a couple of friends who visit each year and seem incredulous every time at some of my post-diagnosis basic health needs when we hang out, namely fresh circulating air, shade from sun, and regular pit stops to re-up energy…

Not so easy to stop hanging out with our partners when they don’t get our needs though! In my experience, it became part of the shifts we needed to make together as a side-effect of the immunity-affecting illness I was living with. It was faster for me to stick to these adaptations because I faced those infection anxieties every day.

I think my partner getting ill so often and needing to self-quarantine made him appreciate that a little more effort on his part (masking up around ill people, keeping healthy) would help him not waste so much time being ill, which would benefit us both.

Seems to be mostly working, and I don’t feel like such a mask nag these days, so maybe defining your own sort of health risk assessment can work for you too?!

[Leigh65]

Thankyou for taking time to reply, dear forum friends I appreciate each and everyone of you: @Ceri_BloodCancerUK @DuncanB @Byrnebaby @Spangleystar @Erica @Duncan

It has helped to know (of) others in this situation, being alone with it is the worst thing. This morning my keep fit teacher sent round the annual Xmas dinner sign up list and I felt rather sorry for myself as I felt I had to turn that down. No carol singing either and I love that! Small things, but hey ho… At the same time, I realise I need to lighten up a bit as I cant just stay home for months! DP still has 12 full time working years to go (!!!) so I feel I need to lay some firm foundations with how I can (more positively/sensibly) deal with all this instead of just spinning off in a blur of anxiety and fear.

DP and I do have separate bedrooms, so that’s helpful! We share a bathroom so there will be much dedicated wiping of surfaces. Last winter we decided to get grocery deliveries in Feb (prime flu season) but this year might start a bit earlier. I wont use public transport from November but I have just treated myself to a fancy new bike, so that should help a bit (on better weather days).

I understand that if I do get a cold, it might take me a bit longer to recover, but that with Covid, I should really contact the hospital. Apparently it is common to be sent anit-virals? I will chase this up. It seems that lateral flow tests are free if you have Chronic lymphocytic leukaemia ('CLL') so I will see if I can get some in.

Yes, maybe DP is worried but cant readily admit it. On diagnosis, I do remember hearing ‘If anything happened to you, I dont know what I’d do, I cant go there…’ now its become ‘business as usual’. However, DP has agreed to wear a mask to some things (like stopping at service stations when we visit family over winter), there’s lots of hand sanitiser in our lives already, even a suggestion of WFH sometimes over winter (in the lounge!) but we have a tiny house like a caravan and would drive each other nuts, hahahaha! Maybe useful if there is some sort of office ‘epidemic’ though, God forbid. I think we are both trying in our way.

I will be thinking of you all facing your own winter difficulties. I hope we can check in occasionally during the freezy season!

xx

[DuncanB]

Hi @Leigh65

Yes I understand it’s tough missing out on the festive stuff.

Thought not just for you but also all forum friends on here.

You mentioned you love Carol Singing.

What would others think about doing our own Blood Cancer UK Forum Christmas Carol Singalong Online?

Just be warned I’m tone deaf

Anyway what do you think forum friends.

Who would be up for joining in with this and helping @Leigh65 not miss out on something that matters to her?

[Spangleystar]

I am in with jingle bells on! Love a Carol Singalong and surely it’s the taking part that matters @DuncanB xx

[Spangleystar]

@Leigh65 yes I was told if anyone tests positive for Covid in my household to contact them straight away for antivirals. Also you can pick a 5 pack of lateral flows up from any pharmacy foc, but you will need to show proof of your diagnosis xx

[DuncanB]

It is @Spangleystar

Just wanted to get the warning about my singing ability out up front

[Leigh65]

Well, that would be most LOVELY!!! Especially if we start with Once in Royal David’s City… who can do the solo?

I know there have been some blood cancer dot org singalongs but I’ve never got along, I think they’'ve been very popular…

Sign me up, @ DuncanB

xx

[DuncanB]

Perfect @Leigh65

Not sure about the solo, any volunteers?

Looks like so far you, @Spangleystar and I have expressed an interest and plenty of time for others to raise their hands to say interested.

We can sort out logistics nearer the time.

Take care

[Leigh65]

Good oh @DuncanB! I’ll sort out my Santa hat

Maybe more will join when it’s advertised as an event and there is a date. Christmas seems a bit of a way off when the leaves are orange… I’m typing this in a T shirt!

xx

[DuncanB]

I’m sure they will @Leigh65

Definitely very early to be thinking about Christmas with it still being early October.

Hope you’re having a good start to the week