Oh @Chrispy how very scary for you.
Perhaps it was a combination of things and you might never know, however it is the high humidity levels I also find difficult to cope with.
I do not deal with what personally stresses me emotionally psychologically and practically.well since diagnosis.
I agree with @Jimbo165 I am also still learning to read my body before It is too late, any handy hints would be greatly appreciated.
I do not know if it is of any use but I attach Blood cancer: money and work | Blood Cancer UK
Emotional, financial and physical help for people with cancer | Macmillan Cancer Support
Yes it does sound as if you are going through a really rough time just now.
I do find this is a very safe space where I can say how it really feels to be me and it sort of helps me.
Be ever so kind and gentle with yourself, you are going through a lot and please do keep posting.
I wish you the same @Jimbo165
Hi @Chrispy , @Jimbo165 , @Erica - I havenât visited these conversations for a few days, but reading them makes me feel part of a well supported club. I actually felt very tearful last week which isnât like me at all, I was trying to do a lot as had 2 granddaughters at pony club camp and although I took my electric bike ( which is my saviour) I still found it very tiring. I was trying to work out if it was the interferon making me tearful or my frustration at not having the energy I always used to have. The thought of it being like this for the rest of my life is very depressing and I was finding it very hard. I see my consultant tomorrow, my platelets have come right down after 3 doses and Iâm hoping he wonât increase my dose- what does any of you more experienced interferon users think??
Hi @Gillyj I find it is really powerful telling my medical team exactly how I am affected by something emotionally and saying my needsâŚ
You and your body have gone through a lot and I personally think it takes itâs toll emotionally, psychologically, physically, practically as well as medically.
I had a really exhausting day involving all of the aspects above yesterday morning at the hospital and I am wiped out today and feel really tearful, which isnât like me either.
Please do let us know how you get on and be very kind to yourself xxxx
Good evening @Gillyj, and everyone else, I hope you are all as well as you can be.
Yes, our emotions are very much a variable part of our lives these days, and I know that my own fluctuate quite a lot nowadays. It is strange to relate that I havenât cried since my heart attack (Sep 2017) but I often do feel a bit upset and I often get feelings of âimpending doomâ which, so far, havenât borne any fruit, thankfully!
Sadly, but I hope only personally to me, my energy levels are not good, and my fatigue is probably the biggest drawback to life these days, although I am bruising far too easily again these days, which I guess isnât a good sign. They are also extremely painful and linger for longer nowadays. However I am back at LRI on the 16th , so will have my bloods done a couple of days before then; it will be interesting to see what they show/indicate.
Fingers crossed for you that your dosage doesnât get increased and that your platelet count has stayed down.
As always, take care, stay safe, look after yourself and remember to keep on smiling.
Jimbo165
Thank you @Erica and @Jimbo165 - for your words of encouragement. Iâm so sorry @Jimbo165 that you are feeling so tired and bruising badly. Youâre many more years down the line than me but interesting that you still feel emotional at times- I hope you have some friends or family who can give you support? Iâll let you know what happens at the hospital tomorrow- Iâm not sure my consultant is the type who would want me to open up about my emotions!
Hi @Erica - sorry you had such a bad day at the hospital- stay strong and get a good nights sleep and hopefully things will seem brighter tomorrow xx
Hi @Gillyj, and thank you for your kind words and support.
I think that my fatigue and tiredness make me feel emotional at times, and frustration, usually with management and their fixation with H&S!, coupled with unplanned overtime, is mainly how my emotions become apparent.
My legion of daughters are pretty supportive, especially Numbers 1 and 4, and my group of friends that I meet up with on a fortnightly basis are all âgood 'unsâ.
Good luck for tomorrow.
@Erica, I hope that everything is as okay as it can be and that you will be feeling much better tomorrow after a good nightâs sleep, whatever that is! 
Take care both and remember to look after yourselves first and foremost.
Best wishes,
Jimbo165
Dear @Erica Iâm really sorry to read about your exhausting day and its after-effects. And yet youâre still here looking after the forum!
Please do as you recommend to us so kindly and look after yourself by taking it easy. Surely youâre due a nice treat tomorrow? Iâd teleport you over for a hot chocolate if I could! Maybe something as simple as having a break from looking after us all here would help, Iâm sure we can manage for a day!
Hi @Gillyj . I am trying to get used to it all and each cycle seems to hit me differently. I did my 4th jab yesterday and have an appointment to see my consultant at 8am on monday morning. Havenât had a blood test yet so not sure how the counts are. Last week i felt rubbish on friday after the wednesday evening jab so took it slow over the weekend. I thought by monday i would be ok but i took a trip to Kew Gardens with my husband and had to stop a few times for a rest. still have a few phases of nausea too. Frustrated that i couldnât do more as @Jimbo165 has also mentioned. By wednesday morning i was feeling back to normal and was reluctant to do the jab but i have continued. I have kept a diary of side effects on my phone to take with me to my appointment.
I always feel drained after a hospital appointment, even if it is a routine one. All the best @Erica
Hi @Chrispy , I know the feeling of not wanting to do the jab just when youâre feeling normal again!! The week comes round far too quickly doesnât it! My consultant told me to get a blood test done 4/5 days before my appointment so that he could assess my results when he saw me. Saw him this morning, platelets and white blood cell have come down well but he wants me to go on 60mcg for 6 weeks when heâll reassess and see if it can come down again- I so hope so as this dose will mean Iâm even more tired!! Luckily Iâve not had any nausea, just jelly legs for 4 days after each injection.
Good luck on Monday- Iâll be thinking of you!
Good evening @Chrispy , and everyone else, I too used to keep a diary, an actual book type diary that my daughters got me when I was first diagnosed. A sparkly gold A5 sized one that I used for the first few months but stopped following a read back through it as it was soooo depressing! It was full of âfeeling rough todayâ, âfeeling rubbish todayâ, âmy bruises hurt a lot todayâ, etc, etc, and that started to make me feel bad mentally and emotionally.
You may have noticed from my posts that I have a slightly overactive sense of humour, most of the time, and this also operates as a sort of visual warning system for my work colleagues as well as family and friends: if I am not cracking (apparently awful!) Dad jokes or taking the mickey out of myself then I am not in a good place emotionally.
I wholeheartedly agree that it seems very cruel and unfair that it can take several days after the injection before you start to feel ânormalâ again, and then it is almost to inflict the âsufferingâ upon yourself once again. Having said that it is better than the alternative of needing but not having any treatment at all.
I hope that I havenât upset you with my experiences. We are all different and we will all react and respond in different ways to the treatments that we will undergo. With luck, new, better, kinder and more successful treatments are being developed and they may find there way to us the future.
Meanwhile, and as always, take care, stay safe, be kind to yourself (Copyright @Erica!) and keep on smiling.
Best wishes,
Jimbo165
Hi @Gillyj I was expecting to have a blood test before the appointment but my consultant is new to the hospital and it was difficult enough to just the appointment. I assume the blood test will be done on the day and any adjustment to the interferon dose can be emailed or phoned before the wednesday dose is due.
@Jimbo165 Thank you for your experience of a diary. I was only going to do it for a few weeks and look for a pattern. If it does get depressing i will stop.
Hi @Chrispy, I usually try to get my bloods done a day or two before I see one of the consultants so as to reduce the amount of time Iâm at the hospital for, and to reduce the car park charges too. I see the consultant, or one of the team, at Leicester Royal Infirmary, having had my blood taken at my local Hinckley Hospital. I normally try to get the final blood test appointment, at 3pm, so as to not interfere with my work day too much.
Good luck with your appointment.
Best wishes,
Jimbo165
Well i have a small drop in platelets but she says that was all she was expecting so early on so she will keep me on the same dose for now. I was taking aspirin before so she told me to continue for now.
@Jimbo165 I have blood tests and prescriptions locally but i am also see at a major London hospital for reviews. The joint care between the hospitals has been for the Chronic myeloid leukaemia and so will continue for the Essential thrombocythemia (ET) too.
I like to hear hospitals working together @Chrispy and it makes sense to have blood tests and prescriptions locally.
Look after yourself and please do keep posting how you are
Hi - My name is Lynn and I am 74. I live in a beautiful part of Scotland on the edge of a loch. I was diagnosed with Essential Thrombocythaemia (Essential thrombocythemia (ET)) two weeks ago and I received my Hydroxycarbamide last week, taking 1 a day at the moment along with aspirin. I also have another platelet deficiency where I bleed easy! I also suffer from under active thyroid, joint hypomobility, mixed connective tissue disease and arthritis. Feeling pretty miserable and very tired. I have lost my appetite, but I am eating, because I know I have to. I see my consultant again in 3 weeks, just before I head to Spain for a holiday. Hope everyone here is as well as can be.
A great big welcome and I am glad that you have found us, I remember feeling the only person in the world with my diagnosis and then I joined a forum and found that there were lots of others.
I am also 74yrs old with lots of other conditions.
Perhaps now is your opportunity to write down all your questions and practicalities for your consultant. They might have advice for your trip to Spain.
Perhaps a handy hint is to make sure you have good medical insurance that knows about your condition for your trip to Spain and enjoy
Please do let us know how you get on.
Look after yourself
@LynnB - welcome! I have only been on this forum a couple of months - was diagnosed with Essential thrombocythemia (ET) and Chronic lymphocytic leukaemia (CLL) in May. Iâve found this forum is a great support , not only with people who are suffering from similar conditions but with the support the volunteers give. Stay strong and positive!
@Chrispy - well done that your platelets are coming down, I feel very envious that youâre allowed to stay on 45mcg. I take my first 60mcg tomorrow evening so am not looking forward to increased tiredness!
Thank you Erica. I have been in contact with our holiday insurance and of course itâs gone up!! Feeling quite low today, very tired and I know I am my own worst enemy, I will not sit still,. My husband keeps telling me to go to bed and rest, but I just canât do that. I feel I am giving in to it and thatâs not what I want to do.
The weather here in the West of Scotland is not helping, pouring with rain today.