Hi @Laws, it sounds as if you have a quite a week, since diagnosis I do not deal with what emotionally, physically and practically wears me out or stresses me.
Having your pacemaker procedure as a day patient on Tuesday would be enough for me and I would probably felt very fatigued for the rest of the week.
Then you say that you were both a bit shocked by your conversation with your health care team, that sounds an understatement.
Then you started your Hydroxycarbamide.
I am not surprised you are tired.
Please keep letting us know how you get on so we can support you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
I hope you both can have a restful weekend and chill out.
What a week for you! Make sure you are taking care of yourself and rest when you need to 
My week feels like a doddle compared to yours @Laws . I do hope your appointments go well and things better for you. Be kind to yourself and have a treat. Make sure you check in here and let us know how things go too.
Well guys and girls day 5 of the dreaded chemo pill, and Iâm on the up. Last week from Thurs onwards I felt sick, indigestion, fatigued and not that good. But today after days of rain and gales we had glorious sun shine, I definitely feel better and itâs not just the weather. Did a short walk, and life is good.
Will keep in touch.
Hi @Laws, thanks so much for letting us know how you are doing, It sounds as if your chemo side effects were, in your words, not that good. but like the weather you are feeling brighter.
Doesnât a walk outside make such a difference, please keep posting how you are. take care and spoil yourself.
Nothing like a bit of sunshine to make you feel a little better. Iâm really glad things are going in the right direction
Hi everyone, another beautiful day to cheer us up. Friday just gone had my appointment in the hospital to give my pint of blood and see the consultant. She said things are improving but not fast enough, the extra platelets are causing my potassium level to rise, and this is a danger to my one kidney. So she has doubled the dose of Hydroxycarbamide from 500mg to 1000 mg and given me pills in case I feel sick. It was the first day yesterday, and I felt tired and ached ( this may have been the worry etc from the day before), and in the afternoon a bit sick, but got away with a couple of Gaviscon. Feel ok this morning so far, so hope this extra pill doesnât have an adverse effect.
Morning @Laws. Yes, it looks as though spring might finally be on its way and that always brightens things up! I assume it might take a while for your body to get used to the new dose of medication? Worry does such funny things to us doesnât it. Iâm always exhausted following any kind of test and appointment. I hope you are taking it easy today - not that we can do much anyway! So, when is your next check? Are they keeping an eye on you?
Hi @Laws thanks for the update.
If I am told of a likely side effect then I become obsessed watching out for it !!!
As @Nichola75 says I am always physically and emotionally drained after all medical appointments, I do not deal with what personally stresses and makes me anxious well.
I have just got back from my daily walk and at this time of the year I can see the spring springing every day. It was some white blossom today, all free, we are so lucky with our seasons to bring something new.
Please let us know how you are getting on.
@Laws hang in there. It looks like youâre making progress. Hopefully the nausea wonât last too long and youâll get the benefit. As we all here know, it can mean that the road to better times has a couple of bumps along the way.
The next check is 8 weeks time, which is unusual as been going every two to three weeks.
Hi @Laws I think it is always worrying when appointments arenât given or donât appear when expected but, and this is only from my experience, I can interpret and my mind go round in circles trying to read things into the vagaries of appointment dates.
Anyway if you are worried you could always give them a call to put your mind at rest.
Hi I was diagnosed with et last Friday Iâm 45 I suffer with anxiety and when the c word was said I just crumbled . I am having a counsellor through the hospital to sessions with me to help with coping mechanisms but all these things help just hearing people live with it and treatable.
Hi @Suzysue75. I completely understand what you mean about hearing the âcâword. I still find it hard to say four years on. Anxiety is hard at times isnât it. Have you got any strategies that support you? Iâm working on that with my counsellor. You must still be in shock - itâs such a lot to take in. Itâs great that you have a counsellor who can support you. Why are the next steps for you? The forum is such a great place to share with people that understand what you are going through. The only advice I can give is be kind to yourself. This isnât easy at all and we are all here from you. Please remember the support line is also there if you need somebody to talk to X
Hi @Suzysue75, you must really be in shock and I think most of us remember all those feelings at diagnosis. I felt in a lonely, isolated bubble with the whole world going on around me, yes, I crumbled inside.
That fear and anxiety and I expect it is doubled because we are in Covid times.
Yes, that âCâ word.
I found counselling very useful.
I was diagnosed with another blood cancer and I am still enjoying life 17 yrs later.
There is reliable information on ET and other issues on the Blood Cancer UK website.
We are here to support you and each other and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Have you got any support from family and friends?
Be kind to yourself, spoil yourself, take care, stay safe and keep posting how you are doingâŚ
Hi @Suzysue75 you have definitely come to the right place at a time like this. I didnât know of the existence of this place when I was diagnosed in 2018 and would really have benefited from being able to talk to people experiencing similar things. When I was diagnosed it was a few days before anyone explicitly mentioned the C word to me. They just called it Myeloma and I hadnât got a clue what that was as no one explained. I also didnât have access to the internet at that point to research it as I wasnât expecting to be in hospital for 9 weeks. When you feel ok enough to talk about how youâre feeling then do come and talk to us or talk to the support line. Theyâre amazing. Never feel that you are alone.
How are you doing @Suzysue75 ?
Hi everyone, just an update on myself. Been on Hydroxycarbamide for total of just over 5 weeks, starting at 500mg and then raised to 1000mg 3 weeks ago to bring down my high potassium level to protect my one kidney, which the blood test last week says it has. Except of the extreme tiredness which I am not use to and try to fight it, and sometimes feeling a bit nausea im ok. I see the consultant re my PV end of April.
Naturally during lock down like everyone else Iâve been careful, but gradually we are coming out of from this. I will still be careful, can anyone tell me how much Hydroxycarbamide lowers ones resistance, my wife and I like the cinema, church etc etc, do I need to worry to much?
Anyway thank you all you lovely people for what you do.
Hi @Laws thanks so much for the update, I cannot answer your medical question, it will be worth asking your consultant, if you can wait that long, or give someone in your medical team a call, but perhaps they might not know, there often hasnât been enough research to know such things
I think that you that you are obviously careful and will use common sense to not get yourself into an unsafe situation. I have found you cannot expect others to be as sensible !!
Let us know how you get on out there.
Hi @Laws Erica has given you good advice. Your medical team will be able to advise you but ultimately the decision on what level of risk you want to take will be down to you. Thereâs so much we still donât know from the research that has been done. I hope that you can find a way forward that will help you enjoy all of the things that give you so much pleasure in life.