Wondering how people here are managing with the heat and summer (am in the UK).
For the past two summers, I seem to have developed some sort of ghastly heat intolerance. Have never really enjoyed summer (much prefer winter and all the cosy that goes with it), but could deal with it okay, even enjoyed a few hols on Greek beaches in my time… although that was when I was in my twenties and am now 60, so, yes, a little bit different Just wondering what is aging, what is me, what is the condition?
Was diagnosed with Chronic lymphocytic leukaemia (CLL) last November, am apparently early stage and so on watch and wait. Apart from fatigue (which gets worse in the late afternoon/evening, I now go to bed at toddler-time, which has been an absolute game-changer) I am not feeling too bad. However, once the temps go past 24 degrees I’m a weak shaking mess. It’s dire and very frustrating. Thankfully, I am not working but am struggling to even go for a walk when it’s over 24 as my legs are weak and I get so wobbly. Doctor has given me rehydration salts but I havent taken them yet, a bit worried about the sodium content as also have a history of kidney stones, intend to wait until its even hotter (Lordy!) and take them as an emergency measure. Feeling very frustrated about it, especially as have been using exercise to help my mental health and as part of my Chronic lymphocytic leukaemia (CLL) ‘medicine’ and unable to do this when it’s so hot. It has also meant I am having to cut down on my social activities.
Just wondering if anyone else noticed a change in their ability to manage the heat along with their blood diagnosis? I’m feeling quite isolated with it. And if so, what changes they have implemented in order to deal with it? Thankyou
I also find I now have a sweet spot of temperature and it’s a couple of degrees below 24! I cannot believe how I used to broil myself on European beaches. I’m soon to be 75 and to be honest I think it’s an age thing rather than a blood cancer thing! My husband is the same. We go all weak and wobbly in the current temperatures. Not helped by having a large allotment which needs watering every other day and having to troll up and down to the water trough carrying heavy cans!!
Fortunately we live in an old house which is gloriously cool in summer. Cannot imagine how stifling well-insulated homes might be?!
We follow all the guidelines -closing curtains/blinds and windows on the sunny side and doing the opposite on the shady side of the house to get some airflow. Drink plenty of cool water. Use a fan in bedroom at night.
Hope you can find a way through this- a couple of weeks to go apparently!
It is particularly challenging at the moment with temperatures nearer 30°. I have Chronic lymphocytic leukaemia (CLL) and find the heat very debilitating. I too close everything until the sun is past the window. I wear loose fitting clothes and have a “cool towel” which a friend gave me. I think they are intended for after sport activities. You just wet them, wring them out and place them round your neck. The effect is very cooling. I hope you can find some cooling help. A fan may not cool the air but it certainly helps too.
Yes, the foreign beaches! What was all that about? And getting off the plane and everything was shimmering in the heat. I loved that. It just boggles my mind!
Oh, I have an allotment too. Thankfully, my partner waters it for me at the moment. It used to be watering cans only but a recent rule change has allowed us to use hoses, which is a godsend.
I cope fine at around 20/21, I literally collapse at 24, it seems to be my tipping point.
Indeed, it could be age, although I have friends in their seventies who still go to tropical islands in the summer. No idea! Am trying everything suggested but have a very very hot house (built in 1880) and my bedroom is south facing; looking into better fans/ac as it’s really affecting my sleep and that’s the bedrock of everything. Thought it might be cytokines or some sort of immune related temperature deregulation, I suppose that’s still possible.
Thanks for your reply. It is helpful to know that others are also struggling with it. Although of course, I dont want any of us struggling. You know what I mean!
I have never heard of a cool towel, although at this minute have my feet in a bucket of cold water cooled by ice cubes in the shape of penguins. The first five minutes are blissful and then it feels rather like a warmish bath. I have a fan by my bed and put it on if I wake in the night, which I will assuredly do.
Hello there @Leigh65, have to say I really empathise with you finding heat intolerable. I’ve never enjoyed being outdoors in the heat, although ironically I get terrible SAD in the UK and thus need more sunlight! Funnily enough I think 24 °C is about my threshold too.
Now I live in a hot place and have had to get my Welsh self used to functioning in the sometimes desert-like heat. Thankfully it’s a dry heat—humidity does me in even faster!
The only things that help me are wearing the lightest/fewest clothes possible, keeping out of the sun during the hottest times, and investing in an energy-efficient air conditioner for the hottest room I work in.
I know AC isn’t that common around the UK, but I imagine it will be thanks to global heating. We’ve had vile heatwaves a couple of times of 30-40 °C days stretching on, so we just lived in the AC room! Not so practical when needing to go outdoors, of course.
Wearing UV-resistant clothing helps when outside though, and can feel cooling even under midday sun I find. You can get cooling neckerchiefs (like cooling towels perhaps?) that you freeze first and make you look a little like a bandito. I wear them out hiking and they seem to cool me better than even drinking iced water. There’s UV-protective hats and umbrellas.
I do feel like having a blood disorder probably plays a lot into how we feel the heat though. Having thinner blood from taking aspirin maybe lets it get closer to the surface, warming it more? That’s my thinking in my case at least.
I hope you find stuff that helps @Leigh65! It’s grim not feeling able to cool down. Do please share anything you find that works.
It’s a treat to hear from you! I feel you are one of the ‘old guard’ here, and were so welcoming when I joined. Hope life is treating you kindly.
Yes, looking into AC but proper AC too expensive as I’ve had to stop working and I no longer have a regular income. Units seem to be in the thousands. Not sure they would even be viable for this tiny cottage either as know you need huge units that live outside and the space here is very very limited. Looking at some portable units but they seem to need particular windows, for the ‘hose’, then it’s simpler fan units, which don’t take the temps down much and would not work over say 28 degrees as they drop a maximum of about 3 degrees apparently. Currently have a much used electric fan by my bed, it takes ‘the edge off’ but as temps crawl upwards it becomes pretty pointless in its circulation of hotter and hotter air.
I didn’t know about these cold towels, scarves etc, so will investigate those. And maybe some sort of meditation! If Buddhist monks can raise their temperature (in several famous practices) then maybe I can lower it Seriously, maybe the way I relate to it is important too. I tend to go into panic mode re heat, instead of accepting it for what it is (within reason, of course I will continue to seek out and implement sensible solutions, but my mind does go rather haywire when I see the temps rising!).
Am writing this staring down a day of (predicted) 30 degrees knowing next week its supposed to be more ‘normal’ 20s and 21s, so currently slightly buoyed by that imminent joy.
Oh, and didn’t know you were British. My partner is American, I’ve been there several times (always Pacific Northwest).
Aww haven’t been described like that before—now that’s a treat, thanks @Leigh65! Life is, dare I say it, good, thanks for asking. I stepped back a bit from the forum to process a whole new random diagnosis unrelated to Polycythaemia vera (PV) which I’m getting used to now. Not long back from a few days away by the sea and am still feeling slightly insulated from the horrors of global reality.
Know what you mean about AC being expensive. After a particularly bad period of firestorms that made fresh air really dodgy we invested in a well-reviewed Friedrich “window unit” as they call them here for about $300 / £220 to save our sanity and health, and haven’t looked back! Unless you have gigantic rooms those units with hoses might not be necessary.
So uncanny that your partner is from this coast! Mine is too. Maybe there’s a universal balance thing going on where for every Brit that moves to the West Coast an American moves to the UK?! Sadly I haven’t been as far north as Oregon or Washington yet as there’s so much to explore around California. It looks stunning further north though, lucky you to have visited. I bet the forests are amazing!!!
Seriously though, the heat can be so grim that I know it can take over whole days and make thinking and moving around difficult. On unbearable days pre-AC I would go and find shaded waterside places where the breeze helped a bit, or find a dog-friendly air-conditioned café. Even the libraries here loosen rules on hot days so you experience cute menageries amongst the racks of books, quite the sight! V. Californian.
Anyway I’ve gone on a bit as usual. Hope your writing is finding lots of inspiration dear @Leigh65, and you cool down soon.
@Leigh65 - I was about to ask the same thing, then saw your post! I am finding it far too hot, and we don’t start July till tomorrow, so will it get hotter still I wonder?
I have Essential Thrombocythaemia and am on 500mg Hydroxycarbamide x 9 per week. I also have post abdominal surgery Lymphoedema, and post breast surgery lymphoedema, which are actually more troublesome than the blood cancer in the heat.
I try to wake early and have a post lunch siesta during hot weather, which means I can enjoy the cool of the evening more. I have a veg garden away from the house…like, but not, an allotment, and it needs watering every 2 days. It would love to be watered with a hose each day I am sure…or soaked every few days, but the plants are being encouraged to find the water by stretching their roots! I cart 30 litres in cans to water.
I think I may have to try freezing a damp cloth to cool down for the second 30degree plus day tomorrow! And maybe that will encourage me to get into my studio to do some work!! (I am a botanical artist).
It may be the condition(s), it may be the medication, or it may be age (78) which means I start the day reasonably energetic, and slow to a snails pace by evening. As if I were would up with clockwork key, then by evening someone needs to turn the key again!!
At 5.30pm the back garden is now all in shade, and I think it will be a good idea to have a little 1/2 hour read!
I am living in the South East of the UK, which will be cooler than California I imagine. I hope you all find nice cooling drink and a place in the shade, with the certainty that the weather here will be cooler later I the week!
Hi @Modesigns I have Chronic lymphocytic leukaemia (CLL) and I have always been on active monitoring.
I am a 75yr old female and I could have written most of your post.
However I live in a flat in the South East, with no garden.
The variety of the weather in this country is what I love about this country and I always seem to wear the clothes for the weather the day before and get it wrong.
@Erica I just wanted to say a personal thank you to you for always being there with thoughtful and helpful comments. It was lovely to see the photo of yourself in the recent newsletter. I gather you are stepping down from regular support here but hope to see and hear your news in future. A very big thank you for all your support and dedication of time.
Oh, I am still on the forum as a member, thank you for your kind words.
You look after yourself too and at the moment I appear to be covered in Mosquito bites!!
Sad to hear so many people are suffering in the heat, though somewhat reassuring to hear I’m not the only one. I had just about concluded that above a certain temperature I just fall apart, and looking at these posts, 24 degrees may well be it. Below that I’m just a guy with Chronic lymphocytic leukaemia ('CLL'), so not exactly bouncing with energy but going about daily life, but as soon as it gets over that, I struggle to do anything. I’m surprised none of the medical team mentioned this.
Hello there @Jacare and welcome to the forum. It’s great that you found us here and thanks so much for sharing your insights on how the heat can affect you, although of course I’m very sorry to read of that Chronic lymphocytic leukaemia ('CLL') diagnosis.
Have to agree with you and others in this thread about how it feels to reach a sort of heat threshold, beyond which energy becomes harder to find—a real bind as dear @DuncanB puts it so well.
I remember the first time I was hit with a wall of hot air when leaving an airport and being forced to realise that climates were very different outside of the UK—now those warm winds are increasing there too. Definitely needs a good hat to tolerate it, sunglasses as well, and cooling clothes with high SPF can really help me.
You’ll find many others around the forum who also live with Chronic lymphocytic leukaemia ('CLL'), and you’re not alone in finding the heat difficult: Can CLL affect how you react to heat and sun?
If you’d like to find other forum members living with Chronic lymphocytic leukaemia ('CLL'), or indeed other facets relating to you, just use the search box at the top.
Hope that helps a little @Jacare, and do please keep us posted about how you get on.
I have just come across your post about how the recent heatwave have affected you. Like you, I have Chronic lymphocytic leukaemia ('CLL') watch and wait and I have had a nightmare of a time. Going to both my GP and A & E has proved useless and, in fact, made me feel worse as they could not find anything wrong with me, despite me feeling so unwell.
I received a chill from an air-conditioned hotel room in early June plus Yorkshire, where we were holidaying was quite cold and wet and I had only bought summer clothes with me. This was a couple of weeks before the first heatwave started and did not feel 100% when the first heatwave struck. However, when the heatwave started, I started waking up in the night freezing and shaking yet dripping with sweat. Although it was hot, I ended up wearing three pyjama tops, sometimes an additional dressing gown and even a thick blanket when going to bed, yet I still kept on waking up freezing. I also slept a lot, I suppose as I had no energy. Living in a flat that retains the heat has not helped matters either.
I fear for the next heatwave. I am 78 and fearful going out as I did one day and was in a hall for two hours with no air conditioning, came home afterwards and looked as white as a ghost and needed to sleep to recover.
There will be more heatwaves, apparently, so how I will cope waking up all the time freezing, I do not know. In addition, my Consultant has left his post, which does not help matters.
Any further advice offered would always be of assistance, especially from the Blood Cancer UK nurses team. Can anything be done to help people like us with Chronic lymphocytic leukaemia ('CLL'), watch and wait?
We’re so sorry to hear that you have been having a difficult time. From what you’ve described, we would advise you to contact your haematology team or CNS as soon as you can and not to wait until your next appointment to tell them about how you are feeling. They are best placed to assess your symptoms and it’s a good idea to keep them updated so that they can support you as best they can.
With the current temperatures, it’s also important to look after yourself in the heat and stay well hydrated. We have some information that may be helpful:
You’re definitely not alone. Heat seems to affect a lot of people with blood cancers, even those on watch and wait. It can make fatigue and weakness feel so much worse, so please don’t feel like you’re imagining it.
On the hotter days, could you try getting your walk in first thing in the morning or later in the evening when it’s cooler? Hopefully the weather will settle down soon. In the meantime, be kind to yourself and don’t feel guilty if you need to scale things back a bit. Wishing you all the best.
I have just come across your post about how the recent heatwave have affected you. Like you, I have Chronic lymphocytic leukaemia ('CLL') watch and wait and I have had a nightmare of a time. Going to both my GP and A & E has proved useless and, in fact, made me feel worse as they could not find any thing wrong with me, despite me feeling so unwell.
I received a chill from an air conditioning hotel room in early June, a couple of weeks before the first heatwave started and did not feel great. However, when the heatwave started, I was waking up in the night freezing and shaking yet dripping with sweat. Although it was hot, I ended up wearing three pyjama tops, sometimes an additional dressing gown and even a thick blanket, yet I still woke up freezing in the heatwave. I also slept a lot, I suppose as I had no energy. Living in a flat that retains the heat has not helped.
I fear for the next heatwave. I am 78 and fearful going out as I did one day and was in a hall for two hours with no air conditioning, came home afterwards and looked as white as a ghost and needed to sleep.
There will be more heatwaves, apparently, so how I will cope waking up all the time freezing, yet dropping, I do not know. Any advice offered would always be of assistance.
It seems that “us” on Chronic lymphocytic leukaemia ('CLL') watch and wait have problems with the heatwave, but nobody has posted that they wake up in the night freezing, yet dripping sweat and need to wear extra night clothes and a blanket, etc. Only one mention of Rehydration Salts, but does anybody else have experience of this and is it for people who freeze at night during a heatwave or what?
Meanwhile, have been given the run around trying to contact my new Consultant, as was recommended by my GP and Nurse Emma of Blood Cancer UK. I wonder if all this heat and my freezing at night will change my Chronic lymphocytic leukaemia ('CLL') watch and wait situation? My internal thermostat is just not keeping up with the weather.
Apparently there will be more heatwaves down the line. I have seen my GP, been to A & E and now given the run-around in various departments in my local hospital. This is really not good enough. Blood Cancer UK do a better job than any of them. All I want is some answers.
Just wondering what is aging, what is me, what is the condition?
Seriously, maybe the way I relate to it is important too. I tend to go into panic mode re heat, instead of accepting it for what it is (within reason, of course I will continue to seek out and implement sensible solutions, but my mind does go rather haywire when I see the temps rising!).
Heat seems to affect a lot of people with blood cancers, even those on watch and wait. It can make fatigue and weakness feel so much worse, so please don’t feel like you’re imagining it.