Ohh my this is me , some days having to near enough force myself to eat at least a bit of something and then not feeling full despite eating for what feels like most of the day !
Drives me batty !
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Yes to also being randomly hungry one day but not so much on others! Also the late night toilet dashes, so annoying.
I have noticed that Iâm more likely to be hungrier after phlebotomy, which seems to make sense after having a pint of blood removed with whatever nutrients it contained. Reminds me of how it feels after a big hike or day of doing tiring things and my bodyâs vitamins and minerals need replenishing. Maybe for those of us with MPNs itâs the blood proliferation overdoing it some days and using up more nutrients, making us hungrier?
On those hungry days thereâs nothing better than some medicinal chocolate, I find. Itâs considered first aid in my home!
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Good evening @Erica and everyone else, I hope that you are all keeping as well as possible.
As requested, here is a quick, if delayed, update from my recent Face to Face appointment with a different consultant.
He wasnât a particularly new face as he was the consultant that âgave me the newsâ just over 6 years ago. My bloods are stable, but not great, my allergic reaction to the Allopurinol has been noted and flagged in RED on my notes, and I am to carry on as normal (Clearly he doesnât know me that well!!).
I am also due to undergo my endoscopy on the 22nd of this month, a sort of deferred birthday treat to myself, so that the medical profession can have a good look (and laugh!) at the inner workings, or not, of my digestive system. I also know one of the things that they will find: a âfailedâ operation from the early 2000âs.
Now then, and back to @clickinhistory league table; other than the fatigue, and the pains in my fingers and feet, food intake is a big area of contention. Most days I make myself eat something, if only to keep my tablets company, but I so rarely feel hungry. However, and about once every 3 weeks or so I feel so hungry I could eat a scabby horse! And i shall be putting that boast to the test on Friday of this week when my sister and her hubby are taking me out for a pre-birthday lunch before they fly off to the land of The Rising Sun, and then out for another meal with two of my daughters (biological for Clickâs benefit!) on the big day on Monday.
Such a busy life, no wonder Iâm feeling so knackered!
Take care everyone, stay safe, be kind to yourselves and keep on smiling.
Jimbo165
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Hey there @Jimbo165, sounds like some good news! Stable bloods is worth celebrating, I say! Well done telling your new old haematologist about the various symptoms you were having. Hopefully that big red allergy warning will help avert further reactions occurring. I dread being allergic to any of my treatments, thankfully so far so good. Have you been offered an alternative to help instead of the allopurinol?
Enjoy your family feasts and make sure to celebrate yourself on your special day. Iâll keep my fingers crossed that your meals align with your hungrier days!
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Thank you @Duncan, a/k/a our Overseas Correspondent, and I hope that the fuss from the Oscarâs has died down some now.
Nope, nothing else has been offered as of yet. I think that there may be some âtoo-ing and fro-ingâ between the hospital and my GP pracrice, with me being âpiggy in the middleâ!
I shall do my best reference the food consumption and have made sure that the bookings are for something that I still enjoy: a nice carvery.
Life, especially âour livesâ are what we can adapt and adjust to now, whilst still doing what we can.
Take care.
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Ha yes thankfully the Oscars are now over despite going on for months in advance, and now the film award cycle begins anew! I love it, especially as we have some lovely comfy independent cinemas nearby. Saw Dune: Part Two again last night for just $6 a mere 10-minute walk away, my kind of bliss!
Hope you donât mind but I checked allopurinolâs purpose. There must be other ways to minimise the gout weâre prone to, and hopefully your doctors will suggest some that donât cause allergic reactions. We shouldnât need to live with medicines that cause bonus issues on top of the ones theyâre trying to treat. Certainly not in your birthday week! Happy birthday, dear @Jimbo165 
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Thank you, and not at all Duncan. I just wish that I had lived a life rich in lovely cheeses and fine Port to justify the gout type symptoms that the Allopurinol was prescribed for! If I understand correctly (unlikely, I know!) the pesky Essential thrombocythemia (ET) is the cause of poor blood works that mean uric acid is being over-produced, hence the pains. Fortunately my sense of humour keeps me going through thick and thin.
Thank you, and only one more year to go (+5 days) until I enter my 7th decade!
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Oh @Jimbo165 as I think I have said before my 70th birthday was my best ever, so you have that birthday to look forward to hopefully celebrating a a carvery, it was with a Colin the Caterpillar cake in my favourite traditional pub with river views
I can vouch for your sense of humour and that is what we love about you.
Have a very happy birthday and enjoy
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Good afternoon @Erica and everyone else, I hope you are all well.
I fear that I may have sent you all, unintentionally, down a rabbit hole with my terminology about my upcoming birthday, for which I can only apologise.
I will be 59 on Monday and then on my next birthday (fingers crossed!) I shall have completed 60 years on Planet Earth and will be entering my 7th decade. I use this phrase now after my former MiL informed me, on the occasion of my 30th birthday, that I was about to start my 4th decade. Once again, my apologise for any added confusion.
I will be enjoying some cake on Monday, after my (hopefully) 2nd carvery in 4 days!
Take care every body, stay safe and be kind to yourselves please.
Jimbo165
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Hi @Jimbo165 I probably confused you in my wording, yes, I did get your age.
Enjoy your carveryâs and may you get a Colin the Caterpillar on Monday and donât forget if it is your birthday you are entitled to the head and rear end of poor old Colin.
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I guess just all the changes to my life style I was once quite athletic a regular runner but osteoporosis put paid to that.
Terrible sleep I guess is the most significant change I used to sleep like a log through anything- now I barely sleep at all.
I fear listing the changes would become my moan fest so instead I am trying to adapt yoga has been a great help to me to overcome losing my ability to run helping to keep active everyday and also as an aid to sleeping. ( sometimes if I do it before bedtime)
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Ok Had a quick look through the latest additions and ignoring the replies on the best bit of a certain cake (which also made it on to radio 2 Sara Cox show this week) the updated board is now:
Drum roll please with three new entries;
1: The Liz Taylor/Richard Burton love affair or not, with food.
2: The person I used to be before my DNA went rogue.
3: Tiredness has made it to number three after a couple of afternoon naps.
4: Clumsiness has tripped over brain fog and fell up the steps
5: Imposter cheeseboard syndrome as a life time of rich and good living is not the reason for gout pains.
passing the port to the left now 
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Good evening @clickinhistory and everyone else, interesting to see the list of most annoying side effects and the way it changes over the weeks that you have been compiling it.
Can I add in to the mix the effects of tiredness/fatigue and how cold it can make you feel? I KNOW that it is relatively warm now, certainly in comparison with the last couple of months, but I am struggling to keep warm, and awake! this evening and I even feel cold to my own touch (I know, kinky right?) If I put any more clothes on I shall look like The Michelin Manâs stunt double, or possibly his triple!
On a different topic, Iâve got my paperwork in front of me for my Endoscopy, scheduled for Friday 22nd, and have had a hospital text message today confirming my appointment for the 23rd! Cue much panic as I canât speak to the department until Monday, but my No3 daughter has already made arrangements, cancelling various customers of hers (She runs a successful dog grooming business called The Empawrium) to be with me on the 22nd. Roll on Monday so that I can find out when I am to undergo my âsabre swallowingâ session.
As always, take care everyone, stay safe and be kind to yourselves.
Jimbo165
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Oh @Jimbo165 everything is such a hassle isnât it and happens at the weekend.
Oh I love âEmpawriumâ
Please do let us know how you get on and when
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Ha ha ha so many euphemisms, @Jimbo165! I hope the âswallowingâ goes well, nudge nudge wink wink etc.
But seriously, how frustrating to have contradictory appointment dates! Is it any wonder we get anxious about this stuff?! Maybe that should be added to the list of annoyances, @clickinhistory?
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@Jimbo165 I started it just to make it a smile about the annoyance of our cancer side effects and to find out how many we share. It is interesting how the list changes even within ourselves from week to week.
As for your visit to the hospital, I hope this new NHS training video for interior camera operators manual.
Well, now we could have a site sumo fight between @Erica and @Jimbo165 dressed up as Michelin men LOL
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I donât know if that Sumo fight would be a fantasy or nightmare @clickinhistory
No offence @Jimbo165 !!
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None taken @Erica, although Iâm not sure that BCUK would approve of this âinter-genderâ combat, even wearing âfat suitsâ for protection. Besides, being the father of 4 daughters I know that I would lose anyway as Iâve seen how âthe fairer sexâ are like in combat!! 
@clickinhistory, yes, it is surprising how much our MACSE change from week to week, day to day, and probably even more frequently than that. I know that aches and pains come and go and when they are in the âgoâ stage then they are easily and rapidly replaced by the next available MACSE!
Isnât life grand!
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You have ruined it @Jimbo165 I was going to run the book and had @Erica as the underdog, we would have made a killing, sorry cough cough, raised much needed funds for the charity 
Clumsy was the bug bear yesterday morning, fell out of the cab and on to the tarmac at Strensham Services and ripped the top of my finger, gravel grazes. Luckily it was only 5.45am, so not many saw it. Making typing fun.
Another one is the stress bubble, almost manic hyper charging of energy and emotions. At least now I know what is behind it and recognise it and deal with it before it gets out of hand.
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Good morning @clickinhistory, and other souls up at this time!, Iâm sorry to hear that you have been in the wars, and at Strensham Services too! 
I hope that your wounds heal quickly though but Iâm glad that there were few witnesses.
I find that I become clumsier/bump into things (fortunately when I am on foot and not in my truck!) the more tired I get, and that that seems to be a one way process these days.
I still get by though, and will be doing my âDomestic Goddessâ impression in a while and running the vacuum around the place and, if I feel up to it, I may even plug it in as well as switch it on!
Onwards and upwards and take care, stay safe and be kind to yourselves.
Jimbo165
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