PV strikes again

Hi @Marylin as you say it might be a good idea to let your haematology nurse your INR results so she is aware of how you are doing.
I don’t think you stood a chance of planting your honeysuckle, you certainly would not stand a chance of getting a trowel in the ground here, it’s solid.
Good for4 you getting hooked on below decks, sometimes I just want to chill out to a programme. I am watching the catch up box set of ER here, and it is interesting how quickly I can get hooked too.
I await with anticipation to hear how your frozen pasty air fries.
I am currently without a fridge (a very long saga) and living out of a double cool bag and very small freezer, My brie cheese has taken on a life of its own !!!
Look after yourself and be kind to yourself

Hi
I did speak to haematology secretary and she said she had booked me a telephone consultation for 16th August and that was the earliest she had. I also emailed my haematology nurse with my results aand concerns but so far have not had a Response.

Today I tried to get an appointment with my GP but was told they were all taken, no good phoning tomorrow as he would be duty doctor and only doing emergencies. They did offer another but I declined as most of them have never heard of Polycythaemia vera (PV)… will try again on Monday but am going in for an INR test then. It is the fact that the soles of my feet have become red again that worries me despite Hydroxycarbamide, aspirin and warfarin indicating my red blood cells are increasing. I really don’t want to get any more clots. I am not sure what I can do to get any reassurance before my consultation.
,
Marylin

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Hi,
Poor you no fridge in this hot weather, years ago we used to stand things in cold water to keep them cool and we also had larders.

My pasty was fine, I probably should have lowered the temperature and cooked for longer as it was quite brown but still very edible. I shall be putting fish and a few chips in the Air fryer to have with a salad for lunch tomorrow. I will probably attempt a pork chop for Sunday lunch I might even coat one side of the chop with sage and onion stuffing and put in some parboiled potatoes to roast together , there seems no end of things to experiment with. Need to get some chicken pieces to try. Must say it is nice not to have to put the oven on in this heat as it makes the kitchen unbearably hot. The airfryer seems to contain its heat.Marylin

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Oh, I remember the larder @marylin and putting things into bowls of water.
My mother used to shop every day carrying a wicker basket.
My new fridge should arrive Monday and then has to wired in by an electrician.
Your air fryer seems an essential kitchen utensil if I may say so, my son wants one and I think it is going on my Christmas list.
Please let us know how your varied repertoire goes and enjoy your experiments

Morning @Marylin,
Thank you for your reply. I hope your keeping okay this weekend & your air fryer experiments have been a success. This all sounds delicious. Anything crispy and I’m sold…

It’s great that you have been really proactive in reaching out to your team and hopefully your Haematology nurse will be able to get back to you soon and offer some reassurance until that appointment in a few weeks time.
You are absolutely doing all the right things and in keeping a track of your symptoms will certainly help in highlighting this when you do see your consultant.
I hope you are finding your feet a little more comfortable or indeed something in the meantime to take the edge off.
In the event of any change in symptoms and any physical signs of clot please do seek urgent medical help.
As you are so very likely aware some signs to be mindful of are-

  • sudden chest pain or shortness of breath
  • swelling and/or pain in your calf on one side
  • slurred or abnormal speech, weakness in your arms or legs, or drooping on one side of your face
  • swelling in your abdomen or jaundice (your skin turning a yellow colour)
  • sudden loss of vision in one eye.

Please know if you wish to talk through your symptoms with us at any point over the phone, we are open 7 days- 0808 2080 888.

Best Wishes, Lauran

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Hi
I have had several of the symptoms, that you list, in the past resulting in clots in my lung, portal vein of my liver, in my carotid artery, in my right arm and recently in the veins of my bowel. Which is probably why I am so concerned about my INR results. I feel like a cat that is running out of lives.

I finally decided to ask to speak to the practice nurse who deals with INR matters. A back door approach. He said that my concerns constituted an emergency and he would get my GP to ring me. So I felt vindicated using that strategy. The GP rang and said that he was fairly sure that given my warfarin dosage my level would improve but to be certain he would prescribe some clixane injections until Mondays test. My treasure of a carer went and got them and administered them as I simply cannot inject myself in the stomach. Too much of a coward when it comes to needles being stuck in me. I actually had a good nights sleep for once last night.

Rather dreading the heat wave this week, not sure I can stand a 30 degree plus temperature. Have been looking into air cooler thingys but got rather muddled and had to ask my daughter to look into them. My electric fan just blows hot air at me when it gets over 25 degrees. It is either an air cooler or take to sitting the shower with cold spray running.

The pork chop I was going to cook today turned out to be a rump steak when thawed, but managed to cook it to my favoured medium rare in the air fryer. What next can I find in the freezer I wonder?

INR test tomorrow at 10.40am.
Marylin

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Hi @Marylin,
Thank you for the update & well done for contacting the practice nurse as i think this was a sensible decision. Did they advise that they would communicate this with your heam team at all or is this something you can also update them on in the meantime?
Your clexane injections will hopefully offer not only some reassurance but also help to reduce the risk of any further development in symptoms for you.

Please do know, there is no such things as a ‘coward’ when having to self inject…it is not an easy or pleasant task so i’m glad you have help with this.

Yes these random bouts of hot temperatures, i would imagine will play havoc not only with your symptoms but also interrupt your delicious sounding air-fryer meals. It does sound like you could have a potential recipe book on your hands Marylin.

Lighter meals and lots of fluid and ice lollies are the way to go. Often cool foot baths or damp towels in the fridge/freezer can help to target areas that are particular troublesome.

Do keep us posted on how you are and again do not hesitate to call us should you need to talk anything through.

Take Care & stay cool Lauran

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Hi @Marylin @LauranBloodCancerUK has given you a brilliant response with handy hints.
I honestly do not know if I could inject myself in the stomach, I know many people do.
Oh, you are so like me freezing a pork chop and then getting it out to eat and finding that it is rump steak !!!
You air fryer is getting better and better.
Let us know how your INR test goes tomorrow.
I hope your daughter finds you an air cooler thingy, I expect they are in great demand.
Look after yourself

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Hi
INR was 2.8 so it is going up. One more clexane injection then 5 mg for 5days and 4mg for 2 days. So hopefully will achieve my target level soon. Consequently feeling a lot less stressed.

My air cooler has arrived.I will get my carer to unpack it and assemble it. I have put it’s ice blocks in the freezer as these cool the water over which the air flows as I understand it. Just in time for the next heat wave.

Got attacked by a gut health yoghurt yesterday whilst peeling the lid off. It shot all down my top and trousers and hand and over the floor. My carer nearly died laughing as she cleaned me and the floor up. Who would have thought such a small pot could be so lethal.

I hope I have got a pork chop out to try for tomorrow’s lunch. I am not a fan of fishing around in the freezer even in a heat wave.
Marylin

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Oh @Marylin yes, pots of yoghurt and their lids are lethal and is is a miracle how far they can fly or the contents spread their wings around.
I am glad your air cooler has arrived I was worried that it would be sold out.
I had a big fridge delivered yesterday and I watched the wonderful delivery men get it out of it’s cardboard box swiftly and with ease. It was installed in minutes.
It would have taken me days and even longer to pick up all the polystyrene bits.
I trust you have found a pork chop this time,
Look after yourself

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Hello I am so sorry you have had such a rough time recently . I think I must hve been lucky recently the nurses seen to be pretty good at communicating with doctors but as I have white hair (I’m sure its that :slight_smile: ) they do tend to treat me like an idiot a lot of the time which irks me no end, as you can imagine .I do hope you are now on the improve and feeling a little stronger and looking forward to going home, sending very best wishes to you xx

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Hi Annie
Thank you for your kind words. I am home now and very much enjoying it.

I get treated like an idiot for the opposite reason to you, my hair is still quite naturally dark for a 79 year old, old lady and Polycythaemia vera (PV) gives my skin a tanned looked, nurses don’t believe me when I give my date of birth and ask my daughter if I am giving the correct year, they think I am much younger. Also people don’t think I am Sick, I am positive my medical centre thought I was a hypochondriac before I was diagnosed with Polycythaemia vera (PV). Every time I get a clot, all I can tell the GP is I am not feeling well, twice I have been told I have acid indigestion when I had a clot on the lung and another on the portal vein of my liver.

Somehow or other I have survived and am grateful to be able to able to enjoy my friends, family, garden and life. Marylin

@Marylin I love hearing about your adventures, cooking and otherwise. Nobody ever questions my age as I haven’t got any hair! It’s really great to hear someone so positive and determined to enjoy life as much as possible.

Hi Erica
Do you have an all singing all dancing fridge? Mine bleeps if I leave the door open for any length of time and has a temperature digital display.

You must be so pleased to have a fridge again, have you crammed it full of goodies yet? Mine is half empty these days as there is only me to use it. and my cheese slices, ham slices, fruit and salad items not to mention gut health yoghurts, orange juice, milk and eggs don’t take up much room. I am trying for a gut healthy diet until my bowel fully recovers. There is ice cream in the freezer part but it is a light one. One thing having my carer shop, I am not tempted by gorgeous treats on the shelves as I shop.But she does get me cartons of brownie bites and packs of Welsh cakes which are my weakness.

Is there a diet for Polycythaemia vera (PV) sufferers I wonder?
Marylin

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Oh @Marylin my fridge is so basic compared with yours and so far not filled with goodies. Sainsburys delivers Saturday morning.
I also try to eat a healthy diet, but enjoy my treats too.
As for a diet for Polycythaemia vera (PV), others my have more experience than me, but perhaps what we know as a healthy diet sounds good to me.
Take care and look after yourself

Hi Franco
I am delighted I am not boring you with my ramblings. I don’t know where my thick hair came from, my father was bald and my mother had very fine blond hair and not much of it. Though she used to say her Danish grandmother used to have long thick dark hair in her eighties, so perhaps I have some of her genes. I did read somewhere that Polycythaemia vera (PV) is more prevalent in Nordic people so perhaps I have inherited the couple of my genes that mutated from her too. My great grandmother was said to have brought margarine to the U.K. when she came. Not much of a thing to boast about though as margarine, as I remember it as a child, was revolting.

I am not positive all the time but usually manage to banish the blues fairly quickly. I am lucky to have some lovely neighbours and friends who keep me going, as well as a treasure of a carer and a wonderful daughter and family. Keep well. Marylin

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Hi Erica
I used to use Sainsburys online delivery service but now there is only me I don’t think I could make the minimum order. Which is a pity as. I did love those mini magnum like ice cream lollies they had achocolate and nut coating, yummee.

I had to buy a fridge to fit the space when my old one died and the one that fit was a bleeper and digital one. I am not fond of machines that tell me what I am doing wrong. I suppose someone has to.

I have just ordered some tulips and some dwarf Iris reticulata to plant for next spring. My favourite is ‘Princess Irene’ a mix of of orange red colour. I haven’t grown dwarf Iris before but have some pots that were intended for my geraniums but due to my last hospital stay they never got planted. I think my Iris will look nice in them. It gives me something to look forward to during the winter. I also treated myself to some ruby giant crocus and ‘Elegant Lady’ tulips. I might possibly have to buy some more pots to put them in.

My hanging baskets, planted by my son in law whilst I was in hospital are really beautiful and are giving me a lot of pleasure. I totter out to water them first thing every morning.

Marylin

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Oh @Marylin you are a girl after my own heart, we have a Sainsbury’s ice cream, there are 4 chocolate flavours, after dinner every night.
You definitely have green fingers and your plans for next year are exciting. I like your colour and height combinations
Your hanging basket is stunning and must be such a joy to you.
You are blessed to have some lovely neighbours who keep you going, as well as a treasure of a carer and a wonderful daughter and family.
Be kind to yourself.

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