My Journey - Jayne
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Re: My Journey - Jayne
Jayne
i feel for you i remember that heavy feeling from the chemo i could not lift 1 leg onto the knee of another had to get other half to put me socks on for me thankfully it goes
i hope your children did not get a shock or upset at your hair loss i am sure they understand
if you do shave it maybe you could raise a bit of cash for the forum / charity
i am thinking of you chin up good luck
the news is on about to watch an article on the bobby robson foundation new drug for cancer treatment hope its 1 for a blood 1
its my birthday tomorrow 53 ancient have a good night Janet
i feel for you i remember that heavy feeling from the chemo i could not lift 1 leg onto the knee of another had to get other half to put me socks on for me thankfully it goes
i hope your children did not get a shock or upset at your hair loss i am sure they understand
if you do shave it maybe you could raise a bit of cash for the forum / charity
i am thinking of you chin up good luck
the news is on about to watch an article on the bobby robson foundation new drug for cancer treatment hope its 1 for a blood 1
its my birthday tomorrow 53 ancient have a good night Janet
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Re: My Journey - Jayne
Happy Birthday Janet, have a lovely day xxxxxxxxxxxxxxxxxxxx
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
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Re: My Journey - Jayne
Hi Jayne (and Chris/Janet)
As I've been posting on your blog fairly regularly, I haven't checked in here recently, tonight being the first time for a week or so. Can't believe the level of Chris's knowledge regarding chemo treatment versus level of blasts etc. Where does she get all this information from? Chris, you must be like a sponge soaking up all this knowledge - unbelieveable!
Anyway Jayne, it would appear that all is going more or less to plan so far with your treatment and I'm pleased that it hasn't been quite as bad as you had feared, although I think you are a pretty tough cookie and don't tend to make a fuss when others probably would. You're very brave and I think you have clearly felt the love and support you have received from your relatives and many friends and I think this has given you added strength. I see you have been posting along with Janet and Chris offering help to a new member who is clearly anxious following her Father's recent diagnosis - you don't cease to amaze me! I guess it takes your mind off your own illness for a little while.
Hope the ultrasound scan goes ok and that you continue to progress well. I note that you're hair has now finally gone and now that that milestone is behind you, I'm sure it won't be such a big deal to you. After all there are quite a number of women who do suffer with alopecia (baldness) and thinning hair which is something they have to live with, and at least you know it will grow back.
Must go now. Sleep well and sweet dreams.
Love Sarah x Mwah Mwah
As I've been posting on your blog fairly regularly, I haven't checked in here recently, tonight being the first time for a week or so. Can't believe the level of Chris's knowledge regarding chemo treatment versus level of blasts etc. Where does she get all this information from? Chris, you must be like a sponge soaking up all this knowledge - unbelieveable!
Anyway Jayne, it would appear that all is going more or less to plan so far with your treatment and I'm pleased that it hasn't been quite as bad as you had feared, although I think you are a pretty tough cookie and don't tend to make a fuss when others probably would. You're very brave and I think you have clearly felt the love and support you have received from your relatives and many friends and I think this has given you added strength. I see you have been posting along with Janet and Chris offering help to a new member who is clearly anxious following her Father's recent diagnosis - you don't cease to amaze me! I guess it takes your mind off your own illness for a little while.
Hope the ultrasound scan goes ok and that you continue to progress well. I note that you're hair has now finally gone and now that that milestone is behind you, I'm sure it won't be such a big deal to you. After all there are quite a number of women who do suffer with alopecia (baldness) and thinning hair which is something they have to live with, and at least you know it will grow back.
Must go now. Sleep well and sweet dreams.
Love Sarah x Mwah Mwah
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
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Re: My Journey - Jayne
Hi Folks
Janet - belated Happy Birthday, you young thing. Oh, to be 53 again!! Hope you had a lovely day. I didn't log on Thurs or Friday as was on allotment in glorious weather all day on Thursday planting early potatoes and yellow mange tout peas!!!
Yes, Jayne you are being so supportive of others when you have plenty of your own issues to be dealing with - but,as you say, Sarah, (or was it Brucie?) didn't she do well???!! Jayne - you look wonderful and you seem to be feeling very well too which is the main thing. Sarah, you have done some lovely posts to Jayne, too, so we are all suporting each other ... which is the whole point of this forum. The forum is really vibrant now and it's all thanks to those of us who put a little bit of time in to welcome new people who come on to post.
I am a bit of a sponge for medical info but clearly am merely scraping the surface from a trained medical person's point of view!! This disease is all at moecular level and very hard to explain to others, I find. People understand heart problems and joint problems etc but our disease isn't visible and to all intents and purposes, most of us look pretty OK! Finding out for me is one way of dealing with it, I suppose. I couldn't do the head in the sand stuff that Nyanko's Dad is doing but in some ways it must be nice to be able to do that and switch off from it all.
Have a good weekend, all. I'm getting dinner cooked for me on Mothers' Day tomorrow. Yummy!
Best wishes
Chris
Janet - belated Happy Birthday, you young thing. Oh, to be 53 again!! Hope you had a lovely day. I didn't log on Thurs or Friday as was on allotment in glorious weather all day on Thursday planting early potatoes and yellow mange tout peas!!!
Yes, Jayne you are being so supportive of others when you have plenty of your own issues to be dealing with - but,as you say, Sarah, (or was it Brucie?) didn't she do well???!! Jayne - you look wonderful and you seem to be feeling very well too which is the main thing. Sarah, you have done some lovely posts to Jayne, too, so we are all suporting each other ... which is the whole point of this forum. The forum is really vibrant now and it's all thanks to those of us who put a little bit of time in to welcome new people who come on to post.
I am a bit of a sponge for medical info but clearly am merely scraping the surface from a trained medical person's point of view!! This disease is all at moecular level and very hard to explain to others, I find. People understand heart problems and joint problems etc but our disease isn't visible and to all intents and purposes, most of us look pretty OK! Finding out for me is one way of dealing with it, I suppose. I couldn't do the head in the sand stuff that Nyanko's Dad is doing but in some ways it must be nice to be able to do that and switch off from it all.
Have a good weekend, all. I'm getting dinner cooked for me on Mothers' Day tomorrow. Yummy!
Best wishes
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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Re: My Journey - Jayne
Happy Mothers Day to all the Mums on the forum
Well I was up, dressed (new top), make up on and ready by 10am!!! Ready for what? Well, I am just so excited to see Martin, Matt and Jess! I haven't seen Matt and Jess since Wednesday and I have missed them loads. So I look pretty glam sat here on my own, lol!!!
I just wanted to let you know my neuts are 0.17, that's rather a large increase. The doc did say he didn't want to see me here next Friday and it looks like with a bit of luck I will be home! It has made me rather impatient though and I just want to go home now. Before I was settled knowing I was in here for 4 - 6 weeks. If I go home on Thursday that is exactly 4 weeks since I started chemo, wow!
So, come on those neuts, keep on getting better!
Love to all and have a fandabydozy Mothering Sunday.
Love Jayne xxx
Well I was up, dressed (new top), make up on and ready by 10am!!! Ready for what? Well, I am just so excited to see Martin, Matt and Jess! I haven't seen Matt and Jess since Wednesday and I have missed them loads. So I look pretty glam sat here on my own, lol!!!
I just wanted to let you know my neuts are 0.17, that's rather a large increase. The doc did say he didn't want to see me here next Friday and it looks like with a bit of luck I will be home! It has made me rather impatient though and I just want to go home now. Before I was settled knowing I was in here for 4 - 6 weeks. If I go home on Thursday that is exactly 4 weeks since I started chemo, wow!
So, come on those neuts, keep on getting better!
Love to all and have a fandabydozy Mothering Sunday.
Love Jayne xxx
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
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Re: My Journey - Jayne
Hi All.
Guess where I am? I came home yesterday!!! How fantastic, I did it in 3 weeks and 5 days which I am so chuffed about. They did say 4-6 weeks.
I feel fine. I did feel a bit off last night when I went to bed but I think I did too much during the day
I've done quite a lot today too, but hopefully I will go to bed and feel fine.
I honestly feel quite well, sometimes my body feels heavy but that's all really. I have never felt sick or nauseus and I am now off my antisickness tablets.
So home for about 2 weeks and then back in to do it again! I do go to hospital on Friday for a blood test, next Wednesday to see Prof B and maybe have a bone marrow biopsy (timing has not been confirmed yet) and then I see Prof Cook on 2nd April. He is my transplant man!
So although I am home I will still be seeing a lot of St James.
Love to all
Jayne
Guess where I am? I came home yesterday!!! How fantastic, I did it in 3 weeks and 5 days which I am so chuffed about. They did say 4-6 weeks.
I feel fine. I did feel a bit off last night when I went to bed but I think I did too much during the day
I've done quite a lot today too, but hopefully I will go to bed and feel fine.
I honestly feel quite well, sometimes my body feels heavy but that's all really. I have never felt sick or nauseus and I am now off my antisickness tablets.
So home for about 2 weeks and then back in to do it again! I do go to hospital on Friday for a blood test, next Wednesday to see Prof B and maybe have a bone marrow biopsy (timing has not been confirmed yet) and then I see Prof Cook on 2nd April. He is my transplant man!
So although I am home I will still be seeing a lot of St James.
Love to all
Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
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- Joined: 01 Dec 2009 21:52
- Location: Essex
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Re: My Journey - Jayne
Hi Jayne
Brilliant news.Hope your initial tiredness soon wears off.I am so glad that all the potential nasties - and I particularly am not fond of sickness/nausea type symptoms ! - have been managed by anti-sickness drugs.
Your last BMB went well so I hope the next one does too. I hope the chemo has done the trick in terms of your blast levels. Is that only measurable from the bone marrow or can they tell anything from blood test?
It must seem a bit strange coming home after being pretty much in solitary for the past few weeks? Even after I have been away for only a week I sometimes find myself bewildered in my own kitchen wondering where the heck the cheese grater is!!! Ah, the pleasures of ageing!
Ah well. A mountain of ironing beckons, then to the allotment to sow a few things and harvest some cauliflours and purple sprouting broccoli! It's all kicking off this time of year!
Take care
Chris
Brilliant news.Hope your initial tiredness soon wears off.I am so glad that all the potential nasties - and I particularly am not fond of sickness/nausea type symptoms ! - have been managed by anti-sickness drugs.
Your last BMB went well so I hope the next one does too. I hope the chemo has done the trick in terms of your blast levels. Is that only measurable from the bone marrow or can they tell anything from blood test?
It must seem a bit strange coming home after being pretty much in solitary for the past few weeks? Even after I have been away for only a week I sometimes find myself bewildered in my own kitchen wondering where the heck the cheese grater is!!! Ah, the pleasures of ageing!
Ah well. A mountain of ironing beckons, then to the allotment to sow a few things and harvest some cauliflours and purple sprouting broccoli! It's all kicking off this time of year!
Take care
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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Re: My Journey - Jayne
Hi
Glad you are home i agree it will take a little getting used to when i have been in hospital you do feel a little awkward as chris says even in your own kitchen ....But your home with family and it is almost easter if you are a chocolate lover (i am not eat the odd bit ) you will have lots of fun eating and if you bake (i think you do ) cake you can so enjoy this next couple of weeks
Chris yummy home grown veg i would sooner eat veg than chocolate how odd is that and on your easter lunch home grown veg lovely what energy you have i do not believe not being able to find the cheese grater is anything to do with your age
well must get on dishes to put in the dishwasher and i may go to town later have a couple of gifts cards from my birthday to spend hmmm may get some wrinkle cream now that is age related
have a good day Janet
Glad you are home i agree it will take a little getting used to when i have been in hospital you do feel a little awkward as chris says even in your own kitchen ....But your home with family and it is almost easter if you are a chocolate lover (i am not eat the odd bit ) you will have lots of fun eating and if you bake (i think you do ) cake you can so enjoy this next couple of weeks
Chris yummy home grown veg i would sooner eat veg than chocolate how odd is that and on your easter lunch home grown veg lovely what energy you have i do not believe not being able to find the cheese grater is anything to do with your age
well must get on dishes to put in the dishwasher and i may go to town later have a couple of gifts cards from my birthday to spend hmmm may get some wrinkle cream now that is age related
have a good day Janet
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Re: My Journey - Jayne
Just to let you know I am stilll at home. I wont go back in until w/c 16th April which will mean 4 weeks at home. I had a bit of a disastrous bone marrow biopsy last week. They struggled to get the trephine (or whatever it is called) out because my bone marrow is buttery, which is common after chemo. I see my Prof on Wednesday 11th for the results and from that he will confirm my chemo schedule for round 2.
I saw my transplant Prof on Monday. My transplant was scheduled for 25th May but because I have had 2 weeks longer at home this will have to change. My donor is now from Germany and is a 22 year old male. He is a 10/10 match (in fact he also matches me on my 11th marker).
So all is going well. I feel absolutely my fine. My counts are amazing, Hb 11.9, platelets 382 and neuts 3.29.
Hope everyone else is doing ok.
Jayne x
I saw my transplant Prof on Monday. My transplant was scheduled for 25th May but because I have had 2 weeks longer at home this will have to change. My donor is now from Germany and is a 22 year old male. He is a 10/10 match (in fact he also matches me on my 11th marker).
So all is going well. I feel absolutely my fine. My counts are amazing, Hb 11.9, platelets 382 and neuts 3.29.
Hope everyone else is doing ok.
Jayne x
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
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- Joined: 01 Nov 2010 17:54
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Re: My Journey - Jayne
HI Jayne
Just wondering how you are when your treatment continues /go back into hospital ect and how are you enjoying your time at home
i have posted a couple of times but this last 6 weeks or so have been hectic birthdays mothers day Easter engagements to attend ect and i am just over both a chest infection and a foot injury yes i have been in the wars a bit ...mind not as much as you...
sure i will hear from you soon know your taking care Janet
Just wondering how you are when your treatment continues /go back into hospital ect and how are you enjoying your time at home
i have posted a couple of times but this last 6 weeks or so have been hectic birthdays mothers day Easter engagements to attend ect and i am just over both a chest infection and a foot injury yes i have been in the wars a bit ...mind not as much as you...
sure i will hear from you soon know your taking care Janet
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