Feeling so difficult to get warm

Thanks @GrandmaJo I also stop after our early dinner, I had it then.
I wouldn’t let your daughter see her ‘My Little Pony’ blanket otherwise she will want it back.
Thanks for your ‘Hot Rox’ tip, I will look it up.
Keep warm.

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Hi, it sounds flippant but I’m not being, a hat will make all of the difference.

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Hi @Billy1mate I can remember being told that you loose the most heat through your head, hence many years ago people used to wear night caps (and probably drank a night cap too !!!) to keep the warmth in.

I feel the cold mainly in my toes at night in bed but I don’t know if it’s connected to the Lymphoma or would have happened anyhow?I have never thought about asking the hospital about it.My dad had something called Raynaud’s Syndrome which is something to do with the cirrculaton of blood to the extremities and I suppose that it might be more to do with that?With me it’s only my toes although the stump where my finger was amputated and damaged thumb feel it too but the Hand and Plastic Injuries (HAPI …not many of the people in there seemed to happy!) told me that it’s common with amputations.

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It must have been traumatic having your finger amputated @Kevan7?
If you don’t mind me asking how did it come about and how did you cope.
Look after yourself

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About 3 years ago a lump formed on my thumb then about half a year later one on my middle finger,both where huge like half marbles.The GP was mystified and as I’d recently been to Belize, Guatemala and El Salvador they sent me in Infectious Diseases thinking it to be some tropical ailment but they decided it wasn’t so sent me to Dermatology as I’d had a previous history of eczema and psoriasis.Dermatology decided it was ORF a viral ailment of sheep and goats but by that time about 3 other lumps had appeared on my hand too!The various biopsies returned no trace of the ORF virus.I then got an urgent call calling me in saying that the MRI had shown that they where burrowing into the bone and could lead to death if nothing was done.So to stop the lump on my finger penetrating the bone they amputated the finger giving them a lot to biopsy…but still nothing.Then another lump came on the palm of my hand and it was cut out.About 4 months later the hospital called me in and the doctor asked,"have you ever heard of Mycosis Fungoides a kind of Cutaneous T Cell Lymphoma?"To which I replied,“no but I don’t like the sound of it!”

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Wow, @Kevan7 what you have gone through, it must have been really, really scary for you, difficult to accept, a long recovery and rehabilitation time and difficult to diagnose.
Thanks for telling me, take lots of care of yourself

Hi all,
Like most of us who have a blood cancer I felt very chilly till I took the advice of a friend and asked for silk thermals for Xmas. They are bliss to wear as your clothes slide over them like your skin. Lands end do have them on sale at a more affordable price, silk is not cheap, but well worth buying. I believe pilots wore white silk scarves and underwear for warmth during the world wars, before planes had heating installed.

The negatives of living with blood cancer and the treatment are difficult to bear at times. Fatigue is the worst for me. I try to take a short walk everyday which helps to warm me up a bit, but find it difficult to summon up energy to cook or do housework. Thank goodness for ready meals. Loneliness is another negative, as it is difficult to get face to face or any appointments with a GP, telephone consultations continue with the haematologists, different ones every time. Accepting that there is no cure for Polycythaemia vera (PV) and chemo pills will be ongoing is hard. Whilst I don’t consider myself ill, I do not feel well any more. We do not go out much as the risk of covid is too great. We only mix with those we can trust not to infect us.

To look on the bright side I have a pair of blackbirds nesting about six feet from my window, the fly in and out all day long looking after their young, I am wondering when they will fledge. Life does go on. Marylin

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@Marylin your description of silk thermals and wearing them sounds positively luxurious to me.
I was also struck by your words ‘Whilst I don’t consider myself ill, I do not feel well any more’, so, so true.
I bet watching your pair of blackbirds is a joy to you.
I saw some baby bunnies near our local river towpath the other day.
Nature is so wonderful and free to watch.
Look after yourselves and although life can be lonely it’s better safe than sorry, we have come this far.

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Hi
The tip for grey underwear is to buy coloured underwear. I now possess black, oyster and even hot pink sets. You can wash them with any other colour items and they don’t discolour at at all.

Just when I thought life could not get any worse, it has. My husband has been diagnosed with dementia. Today he did not know who I was when I visited him in hospital where he is being assessed for his care needs. It is all rather devastating. I will cope somehow but it is difficult when I don’t have much energy and am being woken up several times throughout the night. One day at a time is my way of coping since my Polycythaemia vera (PV) blood cancer diagnosis. Let’s hope it will work from now on. 2022 has been even more horrible than last two years so far. Marylin

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Hi @Marylin. I can only imagine how difficult that visit was for you today. I think one day at time is the best we can do sometimes and out only way through when things are challenging.
Please take care and keep posting. Sending extra special wishes x

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Oh, @Marylin it must have been absolutely devastating for you when your husband did not recognise you yesterday, I cannot imagine what emotions, thoughts and practicalities are whizzing through your mind.
Yes, one day (hour, minute) at a time is as much as we can cope with.
The most difficult ones for me are to accept and even harder, ask for help.
It does not mean that you love your husband any the less.
It is even more important that you really look after yourselves and be kind to yourselves.
Please keep posting and please keep us updated and use us and the support line as your outlet to say how it really is for you.
p.s. that hot pink underwear set sounds fabulous.

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I’m so sorry to read this, @Marylin. You have so much on your plate. I can’t imagine how difficult this must all be for you.

Sending you love across the airwaves. X

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Hi
Thank you for all your replies, I have been somewhat distracted as husband is still in hospital awaiting a care plan to be agreed and funded. I spent 3 hours on the telephone this afternoon with Adult Social Care, Carers Allowance and British Gas as projected usage letter was needed for Adult Social Care. The hospital is an hours journey away so have to organise a person to drive me as I try to visit on alternate days. My son is trying to get a flight from NZ, cheapest flight £12,000 he is a large 6’2” so needs business class for long haul. Flights are still scarce. That is a ridiculous amount normally it was less than £2,000 which is still a lot of money. Hire cars are scarce here due to shortage of new cars, he was quoted £5000 for two weeks, some New Zealanders are having to sell their cars to get here for funerals. Thank you for your support. Marylin

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Oh, @marylin you must be so .exhausted with all that organising and hassle.
Everything is so expensive isn’t it, it’s unbelievable.
I hope your husbands care plan get’s sorted soon and your son’s visit, it must be such a worry for you.
Perhaps the main thing is that you do not get lost in all this emotional, physical and practicalities you are dealing with and also take care of yourself and be kind to yourself.
Please keep posting when you can

So much to deal with. I really hope your so can get here soon. I can imagine you are so looking forward to seeing him X

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I know what you mean @Marylin , I used to be like a boiler before treatment and I now feel the cold. I must be getting better as I am nearing the end of my Chronic lymphocytic leukaemia (CLL) treatment.

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I cannot get to grips with the weather at the moment @Billy1mate.
It is quite cold and windy in the mornings then by mid afternoon it is really hot.
What do I wear ???
Look after yourself @Billy1mate

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My dad is the one with Myelodysplastic syndrome (MDS). He is cold a lot of the time. In the last week when it’s been about 29 degrees in our bathroom he’s complaining the heating is not on. He does get chest pain and feels tired all the time. Also get dizzy occasionally.
He goes to bed wearing more than he does during the day and then ends up sweating through everything as he doesn’t seem to register when he’s overheating either. Very frustrating for my mum as she’s doing bedding washing everyday.
Has anyone else had this experience?
My dad has no active treatment other than blood tests to check his levels. He stopped going to the hospital to see consultants about his blood results. I wonder if more could/should be done if he were to ask to go back?

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Hi @Ali24, I have to say I don’t think that my inner thermostat works and I feel hot when I should feel colder and vice versa but certainly not to the extent of your dad.
A few years ago the hospital discharged me back to my GP’s care saying if anything changed the GP could fast track me back to the hospital consultant.
In your other post you mentioned your dad’s heart problem as well and perhaps that might make him cold as well, I don’t know.
It might be an idea if your dad saw his GP about all his symptoms and a way forward discussed. I always suggest people are pleasantly assertive, but your dad has to want to go, I wonder if he would go with your mother or yourself.
Please let us know how you get on and you also have the Blood Cancer UK support line details.
Look after yourselves