Hi @Jimbo165 I reckon that is a positive appointment and I am impressed your consultant rang you back with extra questions.
Please do keep updating us especially about your headaches.
Really look after yourself and celebrate the small wins
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Good evening @Gillyj, bless you and thank you for your kind thoughts and checking in to see how I am doing. I hope that you are well and that your own situation is nice and stable.
In all honesty Iâm not too sure how I am: I still have the headaches and my fatigue has deepened and then âthe Lurgyâ arrived on the scene at the start of this week but, thankfully the combination of paracetamol (other painkillers are available) and a cheeky nighttime âtotâ (purely for medicinal purposes you understand) have seen it almost disappear!
Itâs not a nice thing to say but I definitely feel worse in so many ways now than I ever have done, but I am still fairly upbeat most of the time and managed to get out last night to meet up with my friends for my fortnightly social outing.
Iâll be going to Birmingham in the morning, to my âold stomping groundâ of Castle Bromwich, to watch my eldest grandson taking part in his first Remembrance Day Parade as an Air Cadet with my old Squadron, so that will be good.
Iâm due my next injection next Friday, followed by another B12 jab on the 4th of December (where has 2024 gone!!!) and then I am back at LRI two days later to see what the blood scores are and what the Pegasys supply situation is like.
Apologies for the long ramble!
Take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Good morning @Jimbo165 , thatâs not nice that you are still suffering from headaches and fatigue- Iâm really sorry to hear that, and to get the lurgy as well is a double whammy!! My mother is still getting over a virus of some sort- itâs taken nearly 3 weeks for her to feel better, thereâs some very nasty ones around unfortunately! A tot at bedtime sounds a great remedy 
.
How wonderful that your grandson is following in your foot steps as an air cadet- that will be lovely to watch.
Iâm fairly stable atm, got a telephone appointment on Tuesday- and Iâll see whether I get prescribed some more pegasys 
it is a worry isnât it!
Take care and keep staying positive- youâre an inspiration!
Gillyj
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Good morning @Gillyj, and thank you (again!) for your very kind words.
Yes, the Pegasys situation, and the uncertainty around supply, is a worry but it is what it is sadly. Iâm doing my best to âride the wavesâ with it as worrying about it a) wonât help the supply and b) worry only raises our stress levels.
Iâm glad that you are fairly stable for now and hope that that will remain the case for a long time to come, and good luck with your telephone appointment on Tuesday.
Yes, I joined the Air Cadets way back, in the mists of time, in 1979 and became the Squadron Commander in 2005 for close to a decade before life got in the way and finally stood down in 2016 but my Son-in-Law is now the Officer-in-Charge of the same unit, which gives a nice feeling of continuity.
My work boss would disagree with your assessment of me and is more likely to describe me as an exasperation or an irritant than an inspiration! 
Stay safe, take care, be kind to yourself and carry on smiling.
Best wishes,
Jimbo165
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Better to be an irritant than just a boring old f⌠
and I think you are definitely an inspiration to us all!
Have a good day, and take it easy when you can
Gillyj
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Hi @Gillyj and @Jimbo165 yes the Pegasys situation must be a concern.
I learn something new about you @Jimbo165 every day, and not that you might be an irritant to your boss.
@Gillyj please do let us know how you get on on Tuesday.
@Jimbo165 let us know how you get on on the first week of December.
Look after yourselves and yes, keep smiling,
Good evening dear @Erica, @Gillyj and anyone else dipping into this thread. What a strange association of words for us âmore experienced life usersâ (a/k/a oldâuns!) have had to come to terms with because of the modern world that we inhabit. As a kid, a thread was something that your Mum used to sew a button back on to clothing! Anyway, I may have ever so slightly digressed!!
I am happy to be a source of unexpected (or potentially, unwanted!) knowledge, or in the modern vernacular, a database.
As far as the Pegasys situation is concerned, it is just one more âthingâ thrown at us that we have to deal with, in whichever way works best for the individual. To my mind, there is no point âranting and ravingâ at the medical fraternity that we interact with on our âirregular regularâ appointments as it isnât their fault that this shortage has occurred. And the big Pharma companies wonât give a flying flip (I thought it best to clean that up as I am typing this before the watershed!) about the end users, us little people, as long as the money is still rolling in for them. Sorry, mild rant over.
It is what it is and I suspect that the mental effect is as great on the doctors as it is on us, as they are having to try to find alternative treatment regimes for us when the original has been working to one degree or another. Again, sorry, that was almost a deep and philosophical response, and most unlike my usual spoutings!
As always, take care, stay safe, keep warm, be kind to each other if you canât be to yourself (take the hint Jimbo165!!) and carry on smiling.
Best wishes
Jimbo165
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Good evening to you too @Jimbo165 and @Erica ,
I think itâs great that â old timersâ can share their experiences with â newbiesâ like me- I know everyone experiences different effects/ symptoms etc but itâs good to hear them to be able to compare and to learn from them.
Youâre absolutely right @Jimbo165 - thereâs no point ranting and raving about the pegasys shortage, and Iâm sure our medical teams are equally worried, but at the end of the day itâs us who are affected as itâs our health, welfare and life at stake. We not only have to cope with our diagnoses we now have to cope with additional worries. But, as you say, it is what it is and we canât do anything about it , worrying wonât help the situation!
Iâve just heard that I have got a place at the Myeloproliferative neoplasms (MPN) conference in London this Saturday, one of the items on the agenda is the pegasys shortage. Is anyone else going ? Itâs a really early start though- 8.45am so Iâm going to be up crack of dawn!!
Take care all
Gillyj
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Hi @Gillyj and @Jimbo165 I agree since my diagnosis I have been trying to de - stress my life and only worry about the things I can change. Since my diagnosis I do not deal with what personally stresses me well.
Great news @Gillyj that you have a place on the Myeloproliferative neoplasms (MPN) London conference this Saturday and that they are going to address the Pegasys shortage, please do report back.
Look after yourself, it sounds as if it will be a long day
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Hi @Gillyj, Iâm really pleased to hear that you have been able to get a place at the Myeloproliferative neoplasms (MPN) conference next weekend; I hope that the day goes well for you and you are able to get some answers to any and all questions you may have.
Sadly I have discovered that doing almost anything beyond what I normally do over a weekend virtually wipes me out now. After yesterday morningâs attendance at the Remembrance Parade, followed by a visit to my sister and BiL for lunch, I felt so utterly knackered and have really struggled with my energy levels, or lack thereof, today.
I will be coming to the Metropolis in early January as Daughter No1 is treating me to the Fawlty Towers stage show thingymabob.
TTFN
Jimbo165
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Hi @Erica, I donât know about you but I find it quite difficult to de-stress my life as there are so many stress factor triggers around these days: or is that a part of the ageing process? When I do attempt to de-stress about things I then, quite often, feel guilty for ânot dealing with the issueâ, which is, I know, plainly ridiculous of me. But now I have reached this far into life, I am very unlikely to change now.
As you have said on past occasions, we are all different and react/respond in individual ways.
Such is life.
Iâm sure that I can hear my bed calling for me now, so I shall wish you all a good nightâs sleep, whatever one of those is!
Take care and stay safe.
Best wishes,
Jimbo165
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Hi @Jimbo165 - I too donât know what a good nights sleep is!! Weird isnât it how it affects us.
Iâll let you and @Erica know how the conference goes.
Please take it easy , it sounds as though you are really struggling energy wise, but it must have been lovely to have been at the service and then have lunch with your sister- we do need some normality in our lives donât we!
Look after yourself
Gillyj
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Hi @Gillyj and everyone else. I have also been stressing about the pegasys situation. A prescription has been put into the hospital pharmacy but i am not sure how many they will give me. Me dose has been moved from 45 every 2 weeks to 90 every 4 due to the shortage with the first 90 due this friday. i was told to keep the weekend free and see how it goes.
I had a face to face consultant appointment yesterday and she looked at me and instantly said âyou look sadâ. It was a bad week last week with visits to 2 friends with stage 4 cancer and a funeral of another friend. I hadnât realised what a toll it had taken on me and i just crashed for the weekend. I didnât realise it was such a toll on me and that is showed in my face. I seem to be taking comfort in too much food.
Anyway on with life as i do usually try to keep on the positive side and joke around but at times i just canât
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Hi @Chrispy, Iâm sorry to hear that you have been going through such a tough week, and iâm sure that the Pegasys situation isnât helping your situation either.
I swing between feeling âoffendedâ (too strong a word and emotion!) and feeling âtouchedâ that people have actually noticed how rubbish I look some of the time, usually when I have overdone things, which is still a far too frequent occurrence despite my best intentions to not do so!
I hope that things will settle down some for you now and that the Pegasys shortage doesnât impact your own treatment too much. As a matter of interest (or just me being plain nosey) which hospital do you attend? It will be interesting to see if the shortage is âevenly spreadâ across the UK.
Meanwhile, and as always, take care, stay safe and be kind to yourself.
Best wishes,
Jimbo165.
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Oh @Chrispy I am not surprised that your stress, anxiety, visiting your 2 friends and the funeral took itâs toll on you. I would be completely fatigued, drained, exhausted and zonked.
Unfortunately I over eat at such a time as well.
I would also show it in my face as well.
Donât forget the Blood Cancer UK support line is there for you on 0808 2080 888 and you can say how it really feels to be you on our forum, I really related to everything you said.
Just be ever so kind to yourself and I reckon it takes longer to build myself back up than run myself down, thanks for describing how you are feeling so well.
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Thank you @Jimbo165 and @Erica for your thoughts.
I am in the south/London and will let you know how many they let me have when i get the call that they have them. There was a delay in processing the prescription and they need to order my Chronic myeloid leukaemia medication so hopefully i will hear tomorrow about thatâŚIt should have been ready yesterday when i had my appointment but it hadnât been processed. It seems to go from the consultant to the haematology pharmacist and then to the inpatients pharmacy. Numerous places for delay. Adds to the stress and frustration.
Hope you get something sorted so you get a bit more ânormalâ time Jimbo. It is difficult when you canât see a time when we feel like are normal selfs.
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Hi @Chrispy @Jimbo165 @Erica and everyone else but particularly you @Chrispy as I so feel for you and understand what youâre going through and how youâre feeling. It sounds like itâs been a horrendous time for you, supporting and being close to seriously ill friends or family is a soul destroying time and Iâm not surprised youâre feeling as you do. But good on you for being there for your friends despite how youâre feeling, and Iâm really impressed with your consultant who saw immediately how you were feeling. I think if you need the comfort of food then go for it, it wonât be forever and you can get back on track when youâre feeling a bit better. ( Iâm also going through an eating phase 
)
Have you got someone at home to confide in and support you? Friends and family can be a great support if you tell them how youâre feeling, And as Erica says, the support line is there for you if and when needed.
Giving you huge hugs, keep us posted on how youâre doing, and although with the increased dose of Pegasus youâll feel tired for a few days, youâll also have many days in between to get back on an even keel.
Stay strong
Gillyj
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Hi @Jimbo165 I have just had a call to say i can pick up my medication tomorrow. she said i will have just the one pegasys. I did ask her about supply and she said they had enough for this month with adjusting dosages and minimise wastage. Doesnât sound very positive.
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Good evening @Chrispy, hope you are okay. I agree, it doesnât exactly fill you with confidence, does it.
Iâm due at LRI in just over 3 weeks time, so I will be able to add my experiences to the debate then.
Meantime, chin up and make sure that you donât drop that valuable Pegasys injection tomorrow!
As always, take care, stay safe, be kind to yourself, keep on smiling and try to keep warm: itâs been blinking cold today up in the oppressed Midlands today, and so foggy this morning too! 
Best wishes,
Jimbo165
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