A great big welcome @Beejay, there are a lot of handy hints in your post, thank you.
Yes, I need to organise myself too, I organise my tablets then the trouble is remembering which day it is, I think it is me that needs ticking off usually.
I am sure my husband would assist with an Excel chart for me, Excel is his favourite solution for everything.
As you have done we all support each other on here and if you would like to talk to someone the Blood Cancer UK support line is there for you.
I really look forward to hearing more about you.
Look after yourself.
1 Like
Hi @Modesigns sorry for the lateness of my reply I was just out getting an industrial padlock for my freezer !!!
Any posts from me tomorrow will have gooey chocolate all over them as will have my face and probably down my front and my keyboard will be a horrible yukky mess.
2 Likes
Ha! Ha! Are you bolting up the chocolate cake??? No, donāt answer!! I am getting the descriptive picture!! 
1 Like
I have been taking Hydroxycarbamide since May 2020. Currently on 1g a day, I take my tablets as soon as I get up every morning. Iām very lucky and have minimal side effects. Slightly thinning hair and brittle nails and sometimes fatigue . I do make sure to keep hydrated though as really helps with the fatigue.
3 Likes
1 Like
Hi Iāve been on it for a number of years now and take mine first thing in the morning - Iāve had no problems at all and it saves me forgetting later in the day - I did come off a year ago as I was getting alot of mouth ulcers and tried interferon - but I became very ill on that so Iām back on chemo albeit a slightly lower dose and Iām doing fine again - for most people hydroxycarbamide works well - good luck and let us know how you get on 
2 Likes
@Leena and @desmum - Thank you! This first week is an interesting one. mostly OK, but had a very slow walk yesterdayā¦as if my clock needed winding up! And have just had a morning sleep! Am drinking a couple of litres of water plus decaf coffee a day, and am fortunately not getting up all through the night! I will reserve judgement until I have been on it for a month. May change the time of taking, but as I said, am not a morning organised person. My husband, on the other handā¦ 
1 Like
A great big welcome @Leena and you have already helped on our forum.
I look forward to hearing more about you.
Look after yourself and stay safe.
1 Like
Hi all! Updating with week one almost over! Am managing well so far. There were a few little observations on the first 2-3 days, but I now seem to be managing. Something might come to bite me at a later stage, but am hoping the water will keep it at bay. Am taking after food between 2 and 2.30pm.
Walks can be interesting! Working out possible pit stops! I think I was probably drinking half this quantity of water previously. Have had a couple of tired spells first 2 days, but am feeling quite normal ATM. It is a relief! Thank you all for your input. It really helps a lot.
1 Like
I have been taking it for about 6 years since being diagnosed with ET. I take one before bed along with other medication and one extra on a Sunday morning. I was told I could take 2 together on a Sunday but chose to take them seperatly. I have had no side effects at all and hope it stays that way. I was told I should drink entry of water with the tablets and probably donāt take enough but so far so good.
2 Likes
Oh @Modesigns someone else that needs pit stops.
The more I think about my need the worse it gets.
My bladder often curtails my walks and the pit stop at home gets vital as I near and put my key in the door.
I know I should take my footwear off before coming into the flat, but sometimes that might be a step too far,
In the cold weather, when the need gets worse, I have so many layers of clothes to discard or navigate as well.
I now wear big girl or Bridget Jones pants for my walks.
Keep planning your route !!!
1 Like
@Ericaā¦I dare not think about itā¦it does exactly that. Had the key in the door chat with a friend the other day! And that happened way before all this! I think some of my walking will end up being little and often. Have a good weekend.
1 Like
@ilivesunshine - thank you, that is reassuring!
1 Like
Iām glad your first week went well- you sound as though youāve got your head around it now - itās very daunting when youāre first told you will be on chemo for life but itās always good to hear others experiences - Iāve been on it so long now I donāt know if some of my symptoms are down to that or old age 
- living with ET will become just another part of your life and hopefully like me only a minor inconvenience - to start with I waited with trepidation for my blood results but now even if theyāre not what I want them to be I just accept and move forward with compromises between me and my consultant - for me itās very important to have a good quality of life alongside controlling the ET - this is a good place to air any worries you have or any advice for others
2 Likes
@desmum - thank you for that! Into my third week and all going really well. I agree re the quality of life alongside ET control, that too is the direction I want to travel. All the best to you!
1 Like
@Beejay - am getting to the point where I think I may well move to morning medication. Two reasons:
- I have almost missed the post lunch dose twice. I nodded off!
- Am drinking 2 litres of water per day minimumā¦crazyā¦and having more in the morning than the later afternoon will be helpful.
I think the water is helping me in many ways, so happy to continue.
I have an interesting conundrumā¦We looked after 2 pigs near Bury St Edmonds one holiday. We discovered that if we got back later than their normal feed time they were keen to get out of their pen! So to enable us to go out for the afternoon we had to slowly change the time of feeding by half an hour a day. Am thinking, do I have to do that to change the time to a morning dose? But think I may just miss one dose and have the following morning.
A few hours of naughtiness!!
Meanwhile my concentration has been on tax! Now finished! And there is a whole day of sunshine awaiting!
1 Like
Lots of thoughts there @Modesigns and interesting analogy to your 2 little short term fostered Bury St Edmonds Piggies.
Let us know how you get on and which routine suits you best, Look after yourself
1 Like
Well, that experimentā¦moving the the time of medication, didnāt last long! I tried to go back an hour, so took before a meal. An hour and a half later I was about to fall asleep standing up. Went upstairs, lay on the bed on my back and slept in that position for two and a half hours, not moving, and hearing nothing! The door bell went, my husband came into the room twice, he dropped things accidentally, scared I would waken, but I heard NOTHING! I have decided to stick with the 2pm time for the moment. That would have been for me, the sort of reaction where it is suggested one doesnāt drive. So it will always be taken after food for me. I occasionally have a half hour nap if need be, but nothing like that ādead to the worldā sleep! I am sleeping more soundly at night, which may be a good thing. Otherwise, one month in to treatment, I am doing fine. I am glad to have taken two months off teaching in order to adjust though. It is a luxury, but at 75 I think a bit of pampering may not go amiss!
My birthday was on Friday, and, LFTested, we went out to a pub with friends for a lovely lunch. Our first lunch-out-with-friends-inside lunch. The next day our daughter and husband and three teenagers came over for fish and chips supper, which they collected, followed by a ginger cake which I made! So lovely to have them all around our table, and for my youngest grand daughter to sing her lovely, newly composed song, accompanied on her ukulele for me!
I made the ginger cake twice! The first time I used self raising flour instead of cream of tartar and baking sodaā¦a big mistake. Two very thin cakes appeared. Edible, but not at all right! 
Second time following instructions, it was lovely!!
Hoping you are all having a good New Year! XX
1 Like
Hi @Modesigns what a lovely way to celebrate your birthday and fish and chips and home made ginger cake, well, heaven.
Yes, a long, deep sleep is fine I think as a one off but more than one of those affects my night sleep.
I finds that it takes time to get into a routine that works for you, medication and sleep wise, donāt beat yourself up.
Keep spoiling yourselves.
1 Like
Hi there, Iāve been taking it for 2 years for ET, I take 1000 weekdays and 1500 weekends. Always first thing in the morning just before brekky. Aside from slightly thinning hair and a bit of lethargy (on Sundays mostly) all else ok. I do make sure I have a big mouthful of water before taking them so they donāt stick to my mouth or tongue as I think that can cause some issues if there is powder on the outside of the capsule. Seems to be working for me as no real issues with mouth ulcers, aside from the usual when the skin is damaged eating something crunchy! (Old age skinš) Take care and go easy on yourself.
2 Likes