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wendyduffield 12 years, 5 months ago.
This is a question for those currently in remission and not taking any maintenance therapy. Do any of you still drink 3 litres of water a day? I have been doing this since I was diagnosed in Dec 10. I am getting a bit fed up with it now but have it in my head that it is a good thing to do??
Wendy
Ha Wendy
I asked the same question ……. For the same reason……..l and she said, ' forever' cause when it comes back the mm can damage the kidneys before the blood results show relapse and the high fluid intake helps prevent damage … It's a bit of a bore though isn't it. I keep loosing count:-)
Love Helen
I wonder about this I have smouldering myeloma and I have read that I should drink 3ltrs a day but thats an awful lot of water,thats another point does it have to be water ,what about tea juice etc. I do try to drink some but I think its a lot less than 3ltrs. Ted
Hi Wendy
Yes I still drink at least three Litre a day.
I put mine in 500 mil Bottles and fill up from the tap, we have a water filter in the tap pull forward for normal cold and push back and it comes through the filter and I put three bottles in fridge and are refilled when empty its better to count?? but I drink more than the three ltr, I add Vodka and red wine to that 🙂 and as you know I am in remission and taking nothing 🙂
Love
Tom "Onwards and Upwards" xx
Ha Ha Tom, I dont think Vodka and Red Bull count towards the 3 litres and neither does my large glass of red wine now and then!
Ted it doesnt have to be water so you can make it up with fruit juices, dilute with squash, drink herb teas but not ordinary tea and coffee or alchohol as that dehydrates. I would ask the doctor at your next check up whether its a good idea for you to drink 3 litres a day. I have got into the habit of it but wondered why I was doing it so thanks Helen for your reply. How was your holiday btw?
Wendy
Hi Wendy
Thankfully even tea and coffee and alcohol count in our neck of the woods:-) Which is good, as I say I keep forgetting where I am with it all, I have to use specific cups and cross them off a list:-/ and very sadly I can't drink wine at all now:-( As it tastes funny since I started on Revlimid.
My holiday was a fantastic experience. As I mentioned in my 'postcard' the shear fact of getting there after everything that has happened over the last 15 months was an emotional journey its self. I managed the journey ok, watched all the films 🙂 but it was 36 hours door to door and the jet lag lasted about 5 days each time. We travelled around North Island only and I went to bed early a lot, not to sleep but to escape people and noise, which I've recently noticed I'm doing a lot, no idea why!
Anyway it was a very normal sort of holiday, no one talked about mm,:-D we did lots of sightseeing, and shopping and eating out. I'd just go back to the car if I felt tired but most of the time I managed ok, even kept up with 2 very energetic 6 year old boys as they bounced along beaches and excitedly ran round The Hobbit film set, which was great fun. I paddled in the Tasman Sea and the Pacific Ocean by moonlight on the same day! (it's a narrow island) I'd like to have had a swim in them but it was winter and jolly cold in that water! 😎 I'm planning my next holiday now and it will be The Inca trail if the seasons and insurance and my blood results all align themselves ok. If not then the French canals I think. Do you have any travel plans?
Take care and keep drinking all that liquid!
Love Helen
Thanks Wendy, I do drink a lot of tea and we go out once a week and I usually drink 3 pints of beer,but I dont count that, I also like the odd glass of red but not very often these days.
I was first told to drink more by a doctor at a clinic for Diverticulitus a bowel problem, but I did see that the same advice is given for MM as it helps with the kidneys. Ted
Hi Helen
sorry I hadnt read your postcard. Your holiday sounds great,shame tht NZ is such a long way away. After completing the Manchester 10k run on Sunday 20th May I took myself off to the Italian Lakes and Switzerland for nearly two weeks and had a relaxing time, cruising up and down the lakes and enjoying the scenery, food and wine. Nothing further planned yet, though the Inca trail sounds amazing! What a challenge that would be, go for it I say
Love Wendy
Hi Helen.
Glad to see you enjoyed yourself in New Zealand.
I asked the same question about how long do I have to keep up the 3 litres a day a couple of weeks ago and got the same answer – forever! Fortunately my taste for beer has come back a little so that does help 😉 I was getting sick of just water and tea. So now I have a beer or two a night. Though last night I went out and nearly had my quota in beer alone. It's been a long time since I'd drank so much.
Glad to hear your planning more trips and hopefully everything will fall into place with your plans.
All the best
Andy xx
Hello Wendy and Helen
I'd just like to say I found both of your posts quite heartening. You Wendy for doing a 10k run and you Helen for the trip to NZ. Colin and I love to travel so all of that seems miles away for us at the minute. Helen it's great to see that these things might be possible. Wendy also I was so pleased to see that activity is possible; Colin was/is a keen sportsman (always beat me at squash,tennis, golf),most annoying! But at the moment he's got a job to keep his eyes open!
My worry beads are out again because although colin was in hospital last week til Wednesday he has been on antibiotics since he came out and to me doesn't seem much better. He is so so tired. My worry is what if the mm has stopped responding to his treatment and gone off like a rocket again. When rationale I think it might be recovering from the virus? We have the consultant thursday but I'm still worried. Well done to you guys
Vicki and Colin x
You have given me hope to as it seems so long since I have had a holiday. I had my sct in January and have had a very good partial remission. Unfortunately I have had a problem with fungus in my lungs which floored me and I spent three weeks in hospital, I am home now still not better but hopefully getting there.
We have decided to have a week in a caravan in cornwall, just in case I get another infection. We decided on a caravan because we can come and go as we please. Hopefully next year I will be up to a cruise or at least a holiday abroad.We had to cancel a cruise last year because I had to start treatment.
I built myself up for a holiday last September after a successful (while I was on it) but gruelling set of Cycles of Velcade. It was only a week back home in Fishguard, Pembrokeshire but it was a large house share with two sisters, two brothers and their spouses. The thought of the ten of us together for the first time… well, ever… thrilled me… and I was truly looking forward to it.8-)
I had just come out of hospital after developing an infection and a DVT… and because I was about to start my last Velcade cycle they gave me a week's rest from treatment. That fitted well because I was just starting my week's rest as part of the cycle… giving me two weeks off treatment.:-)
So we all gathered at my middle sister's country pub between Hereford and Hay-On-Wye for an overnight stay and set off in convoy the next morning. My wife Janet has a macular problem that, while not degenerative, becomes problematic in poor light.. and we had rain or dark rainclouds all the way… which meant me driving. :-0
I paid the price… I spent the week either in bed or on the sofa/chair with my legs up… one in particular doing a fair impression of an Elelphant's leg. My siblings were busy each day delving into records and visiting relative places for my middle sister's (Sian) family tree. Suffice to say there were lots of meetings in pubs various around the north of the county and lots of meals with copious amounts of beers and wines etc. I smiled and encouraged but could not move about and was banned from alcohol… in short what had promised to be a wonderful time was in fact a miserable, painful and uncomfortable time… I just wanted to be home.:-S
Since then I have been very nervous about driving any distances and very reluctant to consider a holiday of any kind. But on the Jubilee week-end I drove half-way from Nottingham to my sister's pub and all the way back.. with no reaction in my leg and apart from a bit of stiffening up (accepted as normal) I felt quite well.8-)
I'm not getting carried away but this little victory has given me confidence… something I have never lacked in my life prior to MM. I have come to realise that I have developed an attachment to home and familiar things that goes far beyond normal reliance… and I am determined not to let such reliance dominate my life.:-|
Just saying.:-D
Dai.
Morning Dai and all
Well done on the trip a double wammy 😀
But its a shame when you book time away and get or feel ill.
You now know you can do it so am sure its going to be the MM way? "Little and Often" 😎
Tom "Onwards and Upwards" x
Hi All
We seem to have moved away from the 3 litres a day post on to holidays,
a much better topic in my view! I agree with Dai, going on holidays especially whilst on treatment can be tricky and difficult. Its all about confidence building and Tom, I think you're right too, little and often to start with.
The first time I went away for the weekend just to the lake district whilst on treatment was awful. I didnt feel safe, miles from any hospitals, couldnt really do anything as I wasnt up to it and missed the safety and comfort of my home enviroment(and being only 3 miles away from my hospital). I think it was too soon. There is the added stress of wanting to have a good time but not having one and being disappointed. I progressed to driving down to Ross on Wye to visit my parents another weekend but that wasnt great either as I got shivery and a high temperature whilst I was there and then had to drive back feeling unwell.
I then got invited to the Algarve to spend a few days with some friends at the tail end of my last treatment cycle. I got the go ahead from my consultant and some travel insurance but nearly backed out at the last minute because I wasnt feeling that well and didnt want to be a burden on my friends and spoil their holiday. In the end I did go and had a good time, felt safe and didnt feel like a burden but I picked up some bug and when I got back ended up in hospital for 4 days with chronic diarhorea!
But all this was confidence building and I flapped less about going away, and in my break between stem cell collection and transplant went to the Algarve for a week and had a great time.
After my stem cell transplant in September, I made quite a quick recovery and had a few weekends away then progressed to longer holidays this year.
Gill, the fungus thing in your lungs sounds awful and I hope you get over it soon and can enjoy your holiday in Cornwall. It sounds like a good first start, without too much stress and I hope you get some sunshine.
And Vicky and Colin, I hope things are better soon and hang on in there.
Wendy
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