[Anonymous]

Hi Megan

I hope Phil is doing well. Your daily ululating brings it all back to me when henry had his sct Inmarch this year at the Churchill in Oxford. It is amazing the different experiences from hospital to Hospital. Henry is in remission now 🙂 but has had a few chest infections. Keep positive. Love sarah xx

[tomParticipant]

Hi Megan and Phil

Am plased they are sorting out the infection once that has gone its a move closer to home.

Dont worry about the daily postings mit brings back things I forgot in 2009/10 ha ha, this post will help others comming up to or just starting the road to remission, if you can please keep it going.

Love and Hugs to you both, and Happy New Year

Tom "Onwards and Upwards" xxx

[meganjaneParticipant]

[u]Day Sixteen (Day Twelve)[/u] – New Year, New Neutrophils

Phil had some aches and pains in his legs last night so he hoped it was a sign that the engraftment of the new cells was happening and the GCSF injections were finally helping the bone marrow produce new cells. Sure enough, the blood tests this morning showed that the neutrophils have risen from 0 to 0.1 so Phil's system has started to re-generate. All the talking Phil has done to his stem cells encouraging them to engraft has worked!:-D The other blood counts have risen as well with the haemoglobin up to 10.9 and the platelets up from the low of 4 to 27.

Phil is still feeling queasy and has grown bored of the hospital food, he is eating the desserts but often the hot food does not appeal. Today for lunch I got him a bacon buttie from the hospital canteen and he managed to eat that so hopefully when he gets home we will be able to find something to tempt his taste buds. Until then the hospital food topped up with stuff I bring in will have to do. The thing Phil is most craving is marmite on toast but he doesn't want me to bring it in as the toast would be soggy by the time it got to his room so that may be the first treat when he gets home. 🙂

Phil is also feeling more tired tonight but I think that may be because he had more energy today so did not nap at all while I was there.

Megan

[meganjaneParticipant]

Hi Jean,

It is definitely a roller coaster ride but 2013 has started off right with the neutrophils finally making an appearance!! Does Frank have a date yet for his transplant? I know every journey is different but hopefully Phil's experience will help others including you and Frank know what to expect, I know we learnt a lot from reading David's 'Musings From Ward 9', Vicki's 'Colin SCT Starting, here goes' and Chris' 'Revving Up For SCT' posts.

Megan

[meganjaneParticipant]

Hi Sarah,

It is amazing how different the same procedures can be. We find it even depends on which nurse or doctor you have on any given day so even within the same ward things are different!! Phil and I do stay positive and it is partly due to reading about people like Henry who are a bit further into the journey and are in remission. It is nice to have that to look forward to and it helps to know the SCT has helped others.

I follow you (and Tom!)on twitter and through your re-tweets I have found other sources of Myeloma info which has been very useful. I also, through Tom's re-tweets am now following Prince Charles which gives me a daily laugh!

Megan

[HelenRParticipant]

Happy New Year Megan and Phil!
Well, the neutrophils clearly have a good sense of timing. You'll be able to toast their birthday every New year's Day now. It's incredibly helpful you writing it all day by day – this thread will be read many times in future! I'm so glad to hear that Phil is continuing to do so well and get through these horrible days.
Ah, Phil and I were diagnosed almost exactly the same time… last week of May I was in and out of GP and A&E and at home puking up, 30th May was when I had an orthopaedic appointment and ended up being admitted (my birthday, get out the violins…) and I think 1 June was the 'you've got a blood cancer, not sure which one yet' day, just before the jubilee weekend. But as you say, it does all blur. I don't know which day was confirmation of myeloma day.
Anyway, I'm fully determined to stick around as long as possible (I'm thinking at least long enough to get my civil service pension would be a nice ambitious target 🙂 ) so as my myeloma twin Phil is obliged to do the same, I won't take no for an answer. We should look forward to marking New Year's Day for many years and even decades to come, and without an IV stand in sight!
Helen

[meganjaneParticipant]

Hi Tom,

So far the infection seems to be getting better so fingers crossed he will stay healthy now. The doctor seems to think he may be let out by the middle of next if his counts carry on in the upward direction.

Happy New Year to you and your young bride Elaine.

Megan

[meganjaneParticipant]

Hi Helen,

Myeloma twin, I like that!!

It is amazing how annoying an inanimate object can be but the IV stand is the most hated thing in the room, luckily it has spent all of today in the corner unused.:-)

Megan

[jmsmythParticipant]

Hi Megan

So so good to read that Phil has turned the corner. Bloods sound good. Frank has no date yet just sitting by the phone. Your posting and others on stem cell transplants are so useful. I have a little notebook that I jot down tips and advice . So thanks to all who have contributed

Megan hope Phill is home soo enjoying marmite on toast :-S
Take care
Love Jean x

[MothasParticipant]

Megan thanks so much for your posts. I have SCT to look forward to (not really the right expression!) in April. I will be starting chemo at some point this month in the lead up to it.

I too have found the SCT journey posts like yours very helpful in understanding what I will be facing and wonder if it might be an idea for the Moderators of the forum to put them in a dedicated thread so that they are easy to find and add too?

I will be documenting my experiences for certain.

all the best

Tom

[jmsmythParticipant]

Hi Tom. Think that is a good idea about dedicated thread. Thanks for PDF file

Megan hope Phil is feeling bit better today

Love Jean x

[VickiParticipant]

Hi Megan, frank,jean and Tom,

Firstly Megan so pleased to hear that phils neutrophils are on the way up. It's such a good feeling when that happens isn't it!, for you and Phil both. The medical teams are so thorough with watching the infections. Colin and I were both extremely worried about that but we could see that the hospitals have an absolute lorry load of antibiotics and different pills and potions to help the patient…..which is good. You made me laugh about the drip stand…..I've got visions of this thing being moved in and out of the room and just ignored because Phil is determined its going! 🙂

It's good news to hear they are starting to talk about home time…..it's great and so frustrating if its not on the day you expect, however that's the time when it's a mixed bag of absolute elation mixed with scared because you guys are 'on your own!). I remember that very well!. Of course your not really going it alone, but it just feels like it as there are no medical teams sat at home just in case :-), however it's a huge huge emotional happy time when they do come home (see dais previous posts, he described it so well!).and don't worry about posting so much, it's helpful to you and all of us who have gone through this process!

Jean, hope frank gets his date soon with those multi million number of cells!.

Happy new year to you all, stay well

Vicki and Colin x

[meganjaneParticipant]

[u]Day Seventeen (Day Thirteen)[/u] Hair No More

When I left Phil last night he had hair, today he did not. There is still a little bit left on the top of his head but effectively it is gone. We had been told and had read that all of his hair would fall out. We thought everybody has a different reaction to things and Phil had lost some hair during his initial chemo but never enough to leave patches or bald spots so maybe he would be lucky. With this in mind Phil had his hair cut before going into hospital but not too short. I know it is more difficult for ladies but any guys reading this post, shave your hair off before you go in. Phil's bed is covered in hair, all his clothes are covered in hair, every time he takes his hat off more hair falls out and he is getting very annoyed by all the hair!!!!

There was really no other change today, Phil still feels queasy and is getting more tired so napping more (or trying to, I seem to call him every time he has just drifted off – oops!).

Phil had quite a bit of lower back, shoulder and rib pain before he went in due to the bone damage. This seems to have mostly gone away. We do not know if this is from the treatment or if it is because he has been doing less, not climbing stairs and generally staying in bed a lot.:-) We had read Peter's post where he mentioned that his Orthopaedic specialist said that the SCT itself can reduce spinal bone pain so we are hoping this is what has made the vertebrae pain for Phil go away. Only time (and going up and down the stairs at home a few times) will tell.

Megan

[meganjaneParticipant]

Hi Tom, Jean and Frank, Vicki and Colin,

I do find it helpful to post as it allows us to sum up each day and when things feel like they aren't getting any better Phil and I can look back at previous days and see how far we have come. It is nice for the neutrophils to be rising although they aren't in a hurry, still 0.1 today, but at least the 0 part seems to be over and the IV stand is still firmly in the corner which is good news.:-D

We aren't getting our hopes up too much yet about a day for home as we know things can change but next week sometime would be nice. I do have to get cleaning soon though as I am afraid I have only done basic chores since Phil went in, I have taken the advice from everyone to look after myself and used it as an excuse to avoid chores when I get home each night.:-) I even asked the doctor how much notice we might get that Phil can come home because I needed to clean the house first!!

Megan

[tomParticipant]

Hi Megan and Phil
Still doing good as far as i can see 😀 , RE the hair thing well I got the Nurse to shave it in Hospital and when I came home I used my Leccie Razor and took it to the bone :-S and kept it like that till it started to grow back, and it was bloomin cold but a good hat sorted that out.

Megan you do right in resting as you will need your strenth when Phil is home (or so my young bride says) get a cleaner in the day before phil is out 😀 save your self for caring (hate that word 🙁 )

Take care

Love Tom onwards and upwards xxx

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