@Jimbo165 Glad to hear you don’t have pneumonia and I think you have done right thing taking some much needed time off work to recover. I did mention my fatigue getting better on my last update but think I jinxed myself I’ve been feeling rather tired and run down past few days, since I’ve been on pegasys my platelet count was 622 before starting them and a couple of weeks ago had another blood test and It was 514 so hopefully heading In right direction. How Is everyone getting on I hope all Is well
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Hi @Jimbo165 and all. Well all in all a positive appointment and unanimous agreement that you need to take some sick leave to help you recuperate.
I find it really hard to take advice from my son, but you are definitely outnumbered by your daughters !!
I also like it when my medical person has a student with them because it means that they are really thorough.
I know we do not give advice, and I am definitely not a medical person, but I prescribe hibernation for you and as always, take care, stay safe, be kind to yourself and carry on smiling.
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Hello @Jimbo165
That was a much better post than I thought it might be! 
Am more than relieved that you dont have pneumonia and like everyone else, that you are taking some time off. Hopefully, you can have some proper down time and rest a bit and take good care of yourself… some soothing soup, a bit of chocolate, all day Netflix, whatever you need!
You are one of my heroes on here, I cant tell you how often you’ve come to mind when I’ve faced medical issues. Have a hospital appointment on Monday that I am NOT looking forward to and am sure I will be recalling some of your ‘words of wisdom’ before I go in. Thankyou for being you!
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Dear @Leigh65, just wanted to wish you well on Monday, I’ll be thinking of you as I’m sure others will be. Please consider treating yourself with distracting and engrossing niceties this weekend!
And dear @Erica, what a great way to think about trainee medical people being in the room with us! I’m going to try seeing it that way for my future appointments, thank you.
Although perhaps it felt rather exposing having multiple examinations @Jimbo165?! So glad you were checked thoroughly though, I’ll keep my fingers crossed for good results. Get better soon, and try not to worry about work!
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Good evening @Leigh65 and everyone else, I hope you are as well as can be. I also want to echo @Duncan wishes for your appointment on Monday too.
I’ve treated myself to some rest and relaxation today, with much time spent sprawled/slumped on the sofa.
Genuinely, this Forum is a Godsend in that I can be as honest and open as I like here, without the fear that I might upset my daughters by telling them fully how I feel. They all get the facts and figures from my blood tests etc, but, as far as I know, they aren’t following me on here.
Thank you for your kind words and, at the risk of sounding very Abba-esque, I’m nothing special, in fact, I’m (possibly/probably!) a bit of a bore and, if I tell a joke, you’ve probably heard it before. Fortunately I have now run out of lyrics!
Ref your appointment for Monday, make sure that you write down your concerns and questions for your Consultant and then, even more importantly, remember to take the paper with you! Not, you understand, that I say this from any sort of experience! 
And please let us all know how you get on.
As always, take care, stay safe be kind to yourself and keep on smiling.
Best wishes, Jimbo165.
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Oh @Jimbo165 but you are special! Personally I love your dad-esque puns, I try to remember the funniest ones to use around youths Also want to shout out your ABBA lyrics, we should reactivate the Friday Jukebox!!! Enjoy the rest of your break 
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I’ve been feeling rather down since yesterday and feel so run down I’ve had no side effects as of yet taking the pegasys but could this be a start? One of the side effects of taking them Is depression. Not after sympathy at all but did anyone else feel like this taking the pegasys? Mind before I started taking the pegasys I would occasionally feel run down so maybe It’s not the injections what’s caused It this time. I work full time kind of wish I could reduce my working hours and having a baby hasn’t helped with the fatigue etc.
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Good evening @RA2000 and everyone else, hope you are all as well as possible and also that none of you have started to develop gills with all of the rain that has been descending on us for what seems like forever now. In fact, and as I was drawing the curtains, I’m sure I saw some cats and dogs doing impressions of stair rods!
RA2000, feeling run down and fatigued has been, and still is, my most severe side effect from being on Pegasys injections, and does feel more debilitating than my year on the Besremi jabs. I do have moments of feeling down but then I usually have a stern word with myself with an instruction to “pull myself together and to stop being such an idiot!” reminding myself that there are people much worse off than I am. This mostly does the trick for me.
I absolutely know what you mean about wishing to reduce my working hours as I too work full time (when I’m not off sick, of course!)
One of the “difficulties” that we face is not knowing whether our feelings and fatigue are down to our condition (other C words are available), the treatment for those conditions or, as in my own case, comorbidities. Not to forget the ageing factor which, in my own case, feels as though it is whizzing by at time & 1/2!
As always, stay safe and take care, be kind to yourself (Copyright @Erica) and keep on smiling.
Best wishes,
Jimbo165
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It’s horrible feeling run down I can’t seem to shake It off but as you say maybe I just need to have a word with myself and say their are people worse off than me, I’m embarrassed to say It as a man but a few times today I could of had a little cry. @Jimbo165 a silly question really it’s something I should of asked my consultant but the pegasys did you ever get Itchy skin after Injecting, my belly Is really Itchy because that’s where I’ve been Injecting, Is their anything that helps stop the itching. I hope everyone Is keeping as well as can be
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Good morning @RA2000 and everyone else, hope you are as well as can be. There is nothing to be embarrassed about in feeling emotional at times: i have even mentioned it to me consultant on more than one occasion. She has then checked for “age related” things such as lower testosterone etc, but mostly it is, I believe, down to the effects of the Essential thrombocythemia (ET) as well as the treatment for that. As regards itchiness, yes, this is a fairly big thing, certainly for us Essential thrombocythemia (ET) people, as well as for others in the MPN (Myeloproliferative neoplasms) gang. I find that temperature changes cause me to itch a lot, so dressing/undressing and showering can be “fun”.
I have areas of discoloured skin on my abdomen from all of the injections I’ve had over the almost 8 years of treatment. Initially it was helpful to see which side I’d stabbed last but with the passing of time, multiplied by the number of jabs, I’ve taken to marking the calendar with either an L or an R so I know which side to stick the needle in now! At my last appointment my Consultant was pleased to see the discoloured areas as this showed her that I was still doing the injections.
An alternative injection site is the thigh but the stomach (definitely so in my case!) is much softer target area than my thighs!
As always, take care, stay safe be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Hello @RA2000, so glad to see you and dear @Jimbo165 are sharing Essential thrombocythemia (ET) and interferon tips. Isn’t it helpful to hear from others experiencing all this?
I’m sorry to read that the interferon is affecting your moods. This unfortunately is a known side effect of the medicine, like you say, and can occur after injecting, as this Essential thrombocythemia (ET) treatment and side effects information states: Essential thrombocythaemia (ET) treatment and side effects | Blood Cancer UK
While I hope knowing that may help take the edge off the low moods, please let your specialists know. Feeling depressed is rubbish and I’d hate for that to drag on without support. It could be that your specialists can suggest a different time of day/week to inject, or offer other ideas. The BCUK nurses are available too.
May I suggest letting yourself note how down you feel and if tears emerge then just let them flow, there’s nothing to be ashamed of in letting emotions show. These sorts of diagnoses are a big deal and we can tend to hold in how we feel about them. I’ve been practicing letting my feelings out about my own diagnosis, and surprisingly there’s lots of anger, which is unlike me. Perhaps since treatment is underway it might feel a little safer to feel it all and let it out a bit?
Please know that if any treatment causes unexpected and unwanted side effects then our specialists are there to help us manage them, but they need to know to be able to help.
Hopefully those moods have lifted already, but you’re not alone with them @RA2000 as you can see from this lovely supportive thread of likeminded people.
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@Jimbo165 @Duncan I’m ashamed to say that I rang In sick for work this morning which Is unlike me as I’m very reliable, I’ve rested all day today and do still feel slightly better but the run down feeling Is still their. I didn’t get any side effects at all off taking the pegasys at first and actually felt less fatigued but obviously the past few days I’ve been feeling run down etc. I will let the specialists know how I’ve been feeling to see If their Is any help or like you say they might tell me to Inject on a different day. As for the tears I did actually let a few flew last night and felt better after It but as a man It’s hard to admit that. I will keep everyone updated how I get on and hope everyone keeps as well as can be and yes their’s alot of helpful people on this forum thanks everyone.
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Good evening @RA2000 @d and everyone else, hope you are all as well as can be. Please don’t feel ashamed for having called in sick this morning, although I really do understand and feel your reluctance at having done so. I did some digging around on my “sick record” from work and was pleasantly surprised to see that it is 23 months since I last took any time off work “on the sick”, and I was in hospital at that time too! Despite my incredibly advanced age (somehow I will be 61 next month!) I am one of the most reliable (well, for attendance at any rate!) members of staff at work and feel bad when I’m not there when I should be.
On the fatigue front, I’ve struggled to define any pattern beyond feeling rubbish (other descriptors are available!) anything from a few hours to a couple of days after self stabbing, which usually lasts anything up to 4 or 5 days. However, you do get used to it and I’ve learnt (belatedly!) to adapt accordingly.
You aren’t alone in shedding tears occasionally, whether they be emotionally charged frustration ones or even self pity ones. The latter usually provoke some seriously strong words to myself though.
As @Duncan has intimated, and I would concur with, being able to read about other peoples experiences on this Forum, and to express your own feelings to people that we are unlikely to meet, can be a godsend at times. I invariably feel better after typing a “good post” on here, getting rid of much of my pent up emotions, usually littered with humour.
As always, take care and stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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@Jimbo165 yes I felt bad ringing In sick but I felt so run down I just knew I wouldn’t be able to manage the full day at work I think sometimes we have to put ourselves first. I am on a trial on the pegasys to see If they would reduce my symptoms of fatigue, I thought I was finally getting somewhere until Saturday when I started to get an overwhelming sense of feeling run down, If the pegasys aren’t helping I’m going to ask to be put off them, as I’m only 37 I was at first told to just take a baby aspirin a day, I think I will just have to accept that fatigue Is part of the course with having this condition and everyone Is In same boat, mind having a 7 month old baby hasn’t helped with disturbed sleep through the nights! I do feel better after reading everyone’s experiences on here and It’s a good place like you say to express our feelings, I have a very supportive partner but beside that their’s no one I know that I can turn to and have a chat about the condition and how I’m feeling, so this forum has been a godsend.
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Good morning @Leigh65 and everyone else, hope you are as well as can be. How did your appointment go on Monday?
Best wishes,
Jimbo165
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Aw, thanks for asking @Jimbo165.
It went as ‘well’ as could be expected, I think. I was very nervous as it felt like opening a Pandora’s Box full of other and extremely unpleasant health problems that I have been trying to hide from for over a year (it has taken that long for my appointment to come through).
Had to meet a consultant re my osteoporosis diagnosis. Usually, you are just given bisphosphonates by the GP but given my other issues, including Chronic lymphocytic leukaemia ('CLL'), I was sent to the hospital.I remember @Erica saying she goes to all the departments except gynaecology and feel the same as now have an endocrinologist, haematologist, urologist…
I did feel that the consultant listened and I felt able to share some of my worries… but I have very limited options apparently and what they suggested I have declined due to massive side effects, bone drugs can be really harsh, osteoporosis is a brutal disease, my mother has it very badly and is totally folded in half :-(((
The consultant didnt have all my numbers so wants to see me again at some point, but I was a bit vague about possibilities. I feel in a strange place… I want to ‘take control’ of my health, but given my anxiety, that sometimes includes looking in the other direction. To be honest, am trying to stop my mental health unravelling at this point.
For now, I am continuing with my exercise regime and supplements and will review ‘later’. I had all sorts of ideas about how my sixties would look and this wasnt one of them! I am sure we can say that though. I’m 61 in three weeks, so we are pretty much on the same page there!
I hope you feel on the mend @Jimbo165 and that the time off has been helpful and soothing and that you have not ‘gone back in anyway’. Actually, I imagine you lying on the sofa watching the luge with a nice cuppa and a toasted teacake! I hope I’m right :-)))))
xx
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Hi @Leigh65
It sounds like a tough time for you right now.
Hopefully there are people you can talk to as mindset is really important in my expeience.
Good you are continuing with your exercise routine.
Take care
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Good evening @Leigh65 and everyone else, hope you are as well as can be, especially after your appointment on Monday. Yes, our comorbidities are a flipping nuisance as far as treatment is concerned.
I’m glad that you felt listened to, and not just fobbed off, that can make a heck of a difference to how we feel as we walk out of the hospital.
I hope that your exercise regime helps you with both your mobility and your mental health and, as @Duncan says, there are your “Fellow (and Fellowette!) Forumittes here for you, as well as the professionals within Blood Cancer UK.
I am very much in two minds as to whether I will be returning to work next week, or going back to my GP tomorrow (Friday) as I am still coughing a lot and feeling short of breath.
As always, take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Oh @Jimbo165 we don’t give advice, but what would you want to say to one of us!!
Really look after yourself, take care, stay safe, be kind to yourself and keep on smiling.
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Oh @Leigh65 it sounds like some good and some not so good news from your appointment. That osteoporosis sounds horribly anxiety-provoking, let alone painful, especially as you see your poor mum having to tolerate it too.
You know, your description of how you deal with anxiety really rings a bell for me. I think you’re really brave to challenge it by seeking answers, even though I imagine it takes a lot of effort (and avoidant procrastination if you’re like me!).
That sense of wanting to confront it but also maybe dreading how it might feel is familiar, and perhaps you also know that nasty sense of overwhelm that anxiety can cause. And the anxious cycle continues 
I hate anxiety, it’s been a bane of my life and it took me experiencing panic attacks to finally try to work through what was making me so anxious. Easier said than done! I really feel for you.
Sounds wise to take time and let all this information settle in while you think it through. It’s not my place to intrude but if you’d like me to share some simple ways to slow down anxious thinking please just ask. Sometimes all we need is some lovely slow breathing to calm our nervous systems.
Thinking of you, I’m sorry you also need all those -ologists!
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