[HelenParticipant]

Thank you very much Wendy, you wouldn't believe the amount stuff and time it takes to make it stick up like that!!
probably why my scalp is still so itchy, but hey got to give it a go, am back to work in 8 weeks and need to look convincing:-)
am now going to try to attach knitwear photo

[HelenParticipant]

Hello Teresa
New photo, very nice. How is Peter? And what will you do at the pub (other than drink:-) ) while you are away?
I don't know if chit chat is allowed or not! It says you can talk about anything – so i do, after all sometimes a normal sort of conversation is a welcome one when the going gets tough, sometimes too it is easier to relate to the people who are in the same boat than the other people around you.
Yes a week today I will be on my way, all very exciting, not had more than 4 days holiday together in the last 2 years with all the other excitement in my life recently:-P I'm hoping for some better weather. There is so much water about here, all of it in the wrong place, pity it is either all or nothing. British weather eh! I'll be needing your seedlings indeed, we have had sleet today and the temperature is down to 1 degree tonight. I looked in the greenhouse yesterday and all the runner beans have damped off and there is no sign of the courgettes or french beans at all so we will have to go out and buy plants:-(
I've still not worked out how to upload pictures from iPad but am working on it! If you email me your address via my profile I can send you the pattern of the little jumper -it is very sweet. Baby now a week late so it will be very little when we get there, jumper will fit for months:-D Hurrah
Love Helen

[HelenParticipant]

Hi Ann
I suggest you ring haematology ward and ask for a talk through for each medicine from one of the nurses or on call doctors. The doses can be started at different levels and then increased as time goes on in some places, so we might all have had different starting doses. For example I took 40 mg dex daily on days 1-4 and12-15 of 28 days and the cyclophosphamide 500mg on days 1 and 8 of 28 days and Revlimid daily for 21of 28 days. There are other patterns and it will depend on the dosage dispensed. You need this to be accurate as you might only have a weeks supply of tablets whereas I was given 4 weeks at a time, so what I have described was specific to me and I had a lot of contacts numbers for problems I might encounter. Don't be afraid to contact the hospital, these drugs are very powerful and need to be taken correctly to be effective. In my case I was in complete remission after 3 months and have remained there, at 0 for the last year. Good luck with it and let us know how you get on.
Love Helen

[HelenParticipant]

Dear Bridget
These infections are a constant nuisance and soooo draining, I'm hoping your next clinic visit goes ok and you get some quality time back soon. How are the family doing? Running round after you I hope? Keep your chin up lady.
Love Helen 🙂

[HelenParticipant]

Hi Tina and Dai
He said it all:-) I totally agree, it seems daunting at the moment but don't let it get you down, avoid the people who only give you sad eyes, do something nice, for yourself or your nearest and dearest every day, make it worthwhile. I have found the people here quite uplifting when I've felt 'off it', which has helped me deal with others.
Love Helen

[HelenParticipant]

Ha ha Teresa , not likely, this jumper is the passport to the baby! Niece has said we all have to knit something before we're allowed to see it. She was joking but we all have taken her seriously and I and all my sisters are competing! 😀 I'll try and attach a photo but I can't do it on the iPad for some reason
Love Helen

[HelenParticipant]

Hello Bridget
I'm wondering how you are at the minute and if you feel like catching up. I've missed your posts.
Love Helen

[HelenParticipant]

Hi Andy
I do hope that Friday is positive for you, keep us posted.
Love Helen

[HelenParticipant]

Hello Jacqui
Good luck with the transplant, It's over 8 months since I had mine and I'm off to New Zealand next week – something I thought would never be possible a year ago.
Love Helen

[HelenParticipant]

Hi Teresa
It's good to hear that Peter is dictating the treatment plan, I'm all for autonomy, but it must be so so difficult for those of you who watch and wonder. I can't imagine how I'd feel, if the boot were on the other foot. I think the secret is to try not to worry and enjoy the time as much as possible, my husband is beginning to realise that when I want to go out and do stuff we just do it and don't wait for anyone else to join us, we have a large close family and formerly would always take grandma and grandpa and a few cousins etc if going out, a bit like an army manoeuvre sometimes. Now we are just enjoying time together.:-)
We go to New Zealand in10 days, I'm hoping my niece has had her baby by then so I will see it 'new'. I've been knitting like a fury for the last few days and produced a very lovely (I think ) jumper that will probably be too warm for it to ever wear. 😀 but it's the thought that counts! English Arran style is so beautiful…. They can just look at the jumper! I'm not packed yet, have clinic a week today then will organise myself. It's very cold here again so no gardening sadly. The flowering cherry is out though and everything is a joyful pink:-D
Look after yourself
Love Helen

[HelenParticipant]

Hi Tina
I swear by peppermint tea but it's not always enough, I need plenty of fibre with the tablets:-P and it's difficult when you don't always feel like eating.
Love Helen

[HelenParticipant]

Hi Pete
Good luck with all the tablets, there is lots on here about the tablets, spreadsheets, yoghurt to mix them with, and of course when you are wide awake at 3am because of the dexamethasone, there is often someone here to talk to. 🙂
Love
Helen

[HelenParticipant]

Dear Andy
Hope the revlimid works for you. I'm just finishing my 6th maintenance cycle of it and am still in remission with a good blood picture.:-D Love Helen

[HelenParticipant]

Hi I have had tiny hard itchy spots all over me since my transplant 8 months ago and was told 'this sometimes happens for some people' – no idea why! It's not red though and doesn't look like an allergy.
I'd keep showing the docs to make sure there is no allergy going on, mine is beginning to lessen now and some of the spots are disappearing though my skin is still very dry and flakey.
Helen

[HelenParticipant]

Hi Debs
Hope you are well, parcel in the post to you with a few raffle prizes…… They look more suitable for a to bola to me but do with them what you wish:-D
Love Helen

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