Morning @Lulu999
It’s warm here again today on The Wirral I don’t see the rain that is forecast happening !
Sorry to hear about your experiences. It’s so exhausting being passed around hospital departments when you just need a straightforward answer. I’m really sorry you’re dealing with all this stress on top of feeling so rubbish.
Trying to cope with a heatwave when your body temperature is all over the place is hard work. A couple of practical things I’ve found really helpful are a Dyson fan (my husband bought me one during chemo I wouldn’t be without it - we even take it on holiday in the uk ) and I actually use my dog’s cooling mat on the bed. It gives a nice, steady cool that really helps for a short time.
Fingers crossed you get some sense out of the hospital team soon. Do keep us updated.
Thank you for your kind words. My problem is mainly waking up at night freezing, rather than managing in the day, which sounds so odd, but it is true. After over 6 weeks, I have made some progress at last thanks to Nurse Fiona of BC UK checking my hospital’s website and coming up with a solution. As, over the years I have basically had phone assessments about my blood results for my Chronic lymphocytic leukaemia ('CLL'), watch and wait, have hardly gone to the hospital, but she found that there was a MacMillan unit there and I spoke to the lady there who got the ball rolling.
Initially, my wonderful Consultant had left and I was given a new one who I have never met. I spoke to his secretary the first time on Tuesday who said she would email him about my situation but he does not answer usually until Fridays! (This is really not good enough, in case of emergency situations.) Anyway, the MacMillan lady found a support nurse who got me into the hospital a couple of hours later for a blood test that must have been different than the other two I have taken this month. The next day I was to see a Resident Doctor from the chemo unit, who was available, and who went over my blood tests, but they were not all in due to some kind of glitch! But at least she listened to me and was able to answer my questions and concerns.
By the time I got home, there was a phone call from her saying the rest of my blood results came in. It appears I might have a liver infection and I will be hearing from them, in the next two weeks, with a date for some ultrasound. Meanwhile, I am still to go on Thursday to see my Consultant’s Resident Doctor although I presume there will be nothing to add until I have the ultrasound. I also have a booked in appointment with my useless GP who left me to my own devices to contact my Consultant. He had called me back to give me an examination - taking my temperature!!! At least it was better than the A & E doctor who asked me for a urine sample which I was not told to give, but said forget the sample and that I probably had a urine infection and gave me tablets for that, plus said to take lots of paracetamols and ibuprofen for three days, along with the urine infection tablets!
Well at least the ball has got rolling thanks to Blood Cancer UK and MacMillan, so now I must wait to see if the liver infection is confirmed. In addition, I was also advised that it will not change my Chronic lymphocytic leukaemia ('CLL') watch and wait prognosis if I do have this infection. At the same time, I know MacMillan can help me to sort out anything else coming up regarding that hospital as well, so that is most reassuring.
Hi @Lulu999
My apologies for being so slow to reply—I’m heading home tomorrow from a trip to York for our 21st wedding anniversary, so I’m catching up on everything slowly.
My goodness, you really have been through it, haven’t you? Good on you for sticking with it and pushing for help.
I’m so pleased Fiona from the BC Nurse team and the Macmillan nurse managed to get things moving for you. Having someone who actually knows how to get around the system makes a huge difference. It must also be a weight off your mind to know that this shouldn’t affect your Chronic lymphocytic leukaemia ('CLL') watch and wait.
Hopefully Thursday’s appointment with the brings a bit more information, do take it as easy as you can in the meantime.
Let us know how you get on, on Thursday, and keep us posted once you get a date through for the scan.
Hope you had a nice time in York, unlike me where I started to get unwell.
Well I finally got to meet my new Consultant and he said that ultra scan showed nothing and sent me for an ECG, which also showed nothing. I must now wait possibly 3 months to have a CT scan. On the plus side, I went to see the MacMillan ladies afterwards, who again were supportive and offered me a cuppa. As my husband has advanced Prostate Cancer, do not want to take him with me to the hospital, as he has his own demons to sort out about his own health situation, if you know what I mean.
I cannot figure out what is going on with my body and neither can the medical profession. It does not fill me with confidence at this stage, but I press on, no doubt having to sleep in heavier than normal clothing in this warmer weather.
[grid] York really is a great place to visit we had glorious weather too . I was lucky enough to visit often with work over the years so it always nice to return
Thank you, York was lovely as you can see , but I’m so sorry you started feeling unwell while you were away!
How frustrating to still not have any clear answers and then be faced with a 3-month wait for a scan. It’s exhausting trying to cope with that uncertainty, especially when you’re caring for your husband and his health situation too. I am so sorry to hear this.
Good to hear you got to see the Macmillan team for a cuppa and a vent afterwards. Nothing like letting off a bit of steam over a brew ( although mine would always be coffee)
I won my cool cloth as a golf prize and they are on all the golf clothing sites but I also bought one to keep in the car from my local garden centre.
Do try them because they are such a low tech solution to overheating. You can also move around freely which is much easier than moving fans from room to room and uses no electricity!
) and I actually use my dog’s cooling mat on the bed. It gives a nice, steady cool that really helps for a short time.
