Hope you sleep well tonight @Erica! You are one brave lady!
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Oh @Modesigns don’t those common side effects frighten the life out of us.
Your bob haircut sounds wonderful and also having your head massaged sounds so de-stressing and relaxing to me. You are definitely worth it.
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Hi @Erica
I’m so glad you had a good laugh and omg I would not liked to of had staples put in or taken out in not surprised at all that you were anxious about it. I’m not surprised you were anxious about having your plaster taken off it was bad enough having mine off my back let alone having one off my head but I can imagine being soaked was an experience and quite a funny one… Oh wow you get to wear a scarf have you got any pretty coloured ones since not working I’ve been trying to brighten my wardrobe it doesn’t always work but I do have some brighter clothes… My face masks are my latest fad I’ve got Christmas ones. My friend makes them so I’ve just raided her material and she’s made me some new ones to add to my collection… I’ve got a load of the blood cancer ones but when I found she makes them the beautiful colours well it just brightens up people’s day and my partner well he just wonders what’s going through my mind when I bought them 
I do feel ever so lucky I’ve not had to go through anything like you have my back op is my only thing and tbh I know nothing about it… One minute I’m talking to a nurse next I’m waking up in recovery talking about not going dancing wondering where their sense of humour is and why I was so worried…
Amazon and eBay are my go to places mainly amazon… So when I rushed on Sunday to buy something then carried on my day I totally forgot about… Mad coincidence that it happened to be where we got my engagement ring from… Stupid thing is what I bought wasn’t jewelry it was a soft toy… Totally agree on the pj’s good idea we get new ones next year and they just wear those ones again… I think I will be the pj joke again last year it was me running out to buy them as I panicked as time was getting on so I went to oromark litterally bought the last 4 pairs of pj’s got home to find a calling card from royal mail and when we picked the parcel up it was my order with the pj’s in… So when I ordered them this year dave said we’re not going to have the same thing as last year are we… No i says… Well that was true this year we had different issue
Omg in so glad I did it even more so as I now can’t drive it the mot ran out today dave will sort it out for me and I’ll be rolling again soon…
I’m so pleased I could keep you smiling…
I’ve done some more of my course and tried ever so hard to give myself a pedicure today turns out I’m not a contortionist but they turned out lovely mum said I had to do them the same colour as my finger nails so that’s what I’ve done… Littluns choice of pink and blue with sprinkles but for the first time I’ve done my toes with gel as well as the gel polish…
I do have a question if anyone knows. I saw on Facebook earlier people with ET should be having a pneumonia jab is that right as I’ve just had flu jab only but then my doctors surgery generally have to be told things… They don’t have a clue about my condition… I have to tell them to contact my haemotolgist or tell them in entitled to stuff which makes them check it out to see if I know what I’m talking about…
If anyone knows if this is correct I’d appreciate it. If you don’t that’s fine I need to call my haemotolgist anyway…
Happy Wednesday I think I’ve lost track if this week already,
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Hi @Ells. My GP suggested it to me. The information on the Blood Cancer Uk website is that you may need it so I would suggest asking your GP or consultant. Might be worth giving the helpline a ring if you have any questions. Here is the info:
Let us know how you get on X
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Hello Ells - I have ET like you and yes the pneumonia jab is one that is needed as part your protection plan - it’s a one off jab fortunately not a yearly one which is handy now life is full of vaccines !! So your GP should be able to arrange that easily for you. All the best
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Hello @Jilly20 and @Ells. I have myelofibrosis (a different MPN) but many years ago my excellent GP advised me to have the pneumonia jab. She also recommended that I have it every five years, and not just as a one-off, due to my weakened immunity. Therefore I have been having a pneumonia jab every five years. I keep a note and request it from my GP every time the next one is due. Hope this is helpful. Warm wishes. Willow
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Hi @Ells, good responses from others to your question.
I was advised by my GP practice nurse to have a pneumonia and tetanus jabs when I was first diagnosed in 2003 and funnily enough recently I asked a different practice nurse whether I needed boosters of the jabs and she gave me them.
I really wanted the tetanus jab because I walk on a rec in the mornings and sometimes dogs attack me. A couple of weeks after having the jabs a dog bit me and broke my skin, it was Penny, the Labrador, to be precise !!
Perhaps we have to remember most medium sized GP services might rarely see a blood cancer patient. I remember when I was diagnosed the Practice Nurse said to me that I was their only one, they had one before but they died, comforting words for the newly diagnosed !!!
So yes, sometimes we do have to educate them.
Please let us know what the haematologist says.
Oh that’s interesting Willow, I will check at my next hospital appointment - much appreciated
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Hi all
Many thanks for all your advice…
Well I’ve not got through to my haemotolgist as yet the secretary is on holiday but I will keep trying…
However I will call the surgery and ask for the pneumonia jab as last time I needed to push my surgery I told them my info had come from the blood cancer website and they said oh yes you are right…
I will keep you posted…
Thank you so much xx
Happy Thursday
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Hi all
I called my doctor surgery today and the result after speaking to the receptionist who advised me she wasn’t medically trained (funny that they like to think they are sometimes) I’ve got a phone call doctors appointment on Tuesday to have a chat about what I’ve told them… I still haven’t managed to speak to the haematologist as the secretary who should be back now but hasn’t changed her answer phone message hasnt called me back and neither has anyone else so I’m still none the wiser Well I am I’ve learnt alot from the website and will make sure things are put on to my notes after what I’ve read today… I am very grateful for all of the information provided…
Oh can anyone tell me where I can get a blood cancer awareness card thingy to carry around to advise emergency services of my condition? And probably all of my others but mainly that one…
Happy Friday everyone
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Hi there @Ells. I do hope you get to speak to the Haematologist soon and am glad you get the opportunity to chat to the GP on Tuesday. The card you mentioned is here: https://bit.ly/3mM8XOV and please do call or email the Support Services Team if you need anymore support: Blood cancer support | Blood Cancer UK. Take care Gemma
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Have all those questions ready for Tuesday! X
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Hi
Many thanks I really didn’t know about that I’ve still so much to learn about this… I appreciate all the info and support by everyone…
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Hi @Nichola75
I will do and I’m pretty sure I’ll get what I always do which will be i don’t know I’ll have to speak to your haemotolgist and get back to you but hey ho I will make sure things are done and updated…
I hope everyone is having a great weekend
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Hi all
Spoke to my doctor yesterday and as I suspected he is going to contact my haemotolgist to see what he thinks about having the pneumonia jab… I explained everything to him on how I came to know about it then he asked me questions and for a change he had clearly read my notes as he knew I’d be speaking to the haematologist at the end of the month…
So some good news I guess…
Anyho nothing has really occurred for me since last time I feel like I’ve lost those days…
I don’t really know what I’ve done…
Happy Wednesday I hope you’re all keeping well
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Hi @Ells, yes, I also seem to be losing days, weeks and months this year, a thing I cannot afford to do !!!
Please do let us know the decision on your pneumonia jab
Happy Wednesday to all !!!
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Good to have a useful discussion! Let us know how you get on X
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Good afternoon everyone
Well I seem to of lost the last week so much has happened yet nothing has happened which is a strange thing…
I’ve heard nothing on the pneumonia jab… I went walking with littlun at the weekend as all he wanted to do was be outside, it didn’t go well and I took him up to the field to play football which he loved then I also took him for a walk like we used to do and I clearly wasn’t ready for that one I’ve suffered so much… But I’m not giving in I’ve still gone out and taken a walk even if I’m just sitting up the end for a bit then waking back… And hey just to make things magical at this time of the year our landlady has given us an early Christmas present she’s selling the house so we’ve got to move … So we’re now house hunting it wasn’t how we were going to do things but another rental it’ll be as we’re not ready to buy yet… Ah well the joys of moving I’m so excited 
I hope everyone is doing great I’ll keep you all posted on my adventures… Oh I’ve got my booster jab on Tuesday 
Happy Wednesday everyone
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Wow, @Ells you and Littlun are certainly spending very special time together, even if you have suffered so much for it.
Just when you were getting your home back together you will be on the move again, you are so looking forward to the festive season and then you get that early Christmas present !!
I really look forward to the adventures of @Ells
Look after yourself and yes, we are not giving in.
What adventures are others having?
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Not a dull moment eh Ells! Take care off yourself though. Fingers crossed you find a
loveky rental for Christmas X
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