We all get good as well as bad news, let's just post the news here....

Dearest Helen,

I am so pleased to hear Caz's news, it must be a relief to you all dear lady, although I know you will still worry about her, it goes without saying love.

Sending you all the warmest of (((((((((((((((((((((((((hugs))))))))))))))))))))))) and an extra special (((((((((((((((((((((((((((hug))))))))))))))))))))))))) for Caz, with many healing vibes.

Love to you all

Maryxxxxxxx

Thanks, Mary, it looks as though the infection risk is about almost as bad as when she was in isolation!  

I think she has been told and will take it to heart now, though! 

my love and hugs to you all

Hello Helen,

I have been following ur posts on this thread for a month or 2 now, i read ur bio on ur profile and have been following ur daughters progress. I haven't sent any posts or anything because i have had alot goin on with my own situation and have just been quietly monitoring ur situation. My bio doesn't tell that much of whats happened of late, i really need to get round to updating it! The reason i have chosen now to send u a message is because i'm due to go into the Royal Free on sunday to start the same trial as what ur daughter Carol has had. I went just before xmas to c them and Dr McNamara is happy for me to start it now. I should have been there this week but i got shingles and couldn't get the other tests done in time. My shingles scabs r infected but apparently i'm not a contagious risk, its just a secondary bacterial infection so they r happy to go ahead with it. I didn't send u a private message because i don't have u as a friend and i thought i would be best to introduce myself first! I'm 26, was diagnosed with stage 2b Hodgkins Lymphoma in Oct 2008, i have had ABVD, ESHAP,Mini beam and BEAM and a stem cell transplant and 20 fractions of radiotherapy. Finished the radio at the start of October but knew quite quickly that it hadn't worked so had a scan done early in November and was told it was stil active with new hotspots. It was stage 2 but was treated as advanced because of the size of the lump in my chest, on the left side, got a small node in my neck also at last check.

My consultant said this trial mite be an option if my celss match, it came back that they were a match and things have been pushed into action since then. I guess really i'm contacting u because i feel i'm in a similarish situation to ur daughter however she has obviously been goin thru it alot longer than i have. She sounds very brave, i haven't been able to go back to work at the moment, altho i did work thru the first chemo, i have been off since January 08 when they first discovered things weren't as simple as they thought. The treatments have worked to an extent in that they have brought a little control, however not enough control for them to leave me untreated for any length of time. I was told this trial isn't a cure and that i would probably need further treatment however i had a good chance of having a significant reaction to it as so far people have had one of 3 reactions, 1 being no reaction at all, 2 being an initial reaction and then nothing and 3, like ur daughter by the sounds of it, a reaction and then further progress afterwards. I really hope this works as well as it can for ur daughter, hopefully it will give me something positive to go on too.

U may send me a message if u like, i have my settings altered so u don't need to be on my friends list.

Take care and hope ur journey is safe when u return home,

Emma

xxx

Dearest Helen,

I do hope that dear Caz manages to stay away from nasty bugs that are going around, bless her, not easy if you want to work though is it, at least she has taken into consideration what her specialists are telling her. Will keep everything crossed for her, that she stays clear of infection. God bless her love and you.

Emjay I am so sorry that you are also having to go through this journey, I wish you all the very best and hope that everything works out well for you love.

(((((((((((((((((((((((((((((((((hugs to you all))))))))))))))))))))))))))))))))))))))))

Love Maryxxxxxxx

Thank you, dear Mary, I know she will try to stay away from infection, the rash is bugging her this evening, we are trying a couple of ideas but she has such dry skin to start with! I'm going to try the local pharmacy for tea tree oil and the old fashioned calamine to try too! 

Emma, bless you, I have requested you as a friend to chat more and more privately. you poor lass, to have both mini BEAM and BEAM must have been tough. I hope the shingles rash can be cleared up very soon, just in case you too get a rash well after, its now almost 6 weeks since Caz had this treatment, it is anti CD25, I have got to know a chemist who was researching into this 10 years ago. 

Caz says make sure you take a dongle in as it is so boring, she found her laptop was an absolute blessing! I bought her silly little parcels to open each day, the things she enjoyed were novelty edibles! the things to do didn't really get done as she got almost TOO bored! 

Dr Macnamara is really nice, as is Fran, the haematology specialist nurse. Caz's case is being handled from the Christie in Manchester, but apparently they have sent a few folk onto this trial too, Caz isn't the only one.

Do keep in touch, I'd like to be able to help if possible

my love and hugs to all on here

Well, folk, am waiting for the emerging daughter to find out if that rash kept her awake, we got quite concerned last night, well, this morning really, as it had spread well across her whole body and the antihistamine isn't doing anything much to help the itching....she cut her nails really short so she wouldn't scratch too badly in her sleep. Put in a call to speak to yesterday's Doc in case there is anything other than the antihistamine she's already taking to help, as if she gets infected from a scratch it is danger time! Needless to say he's in clinic! So am waiting with the phone by my side......

hope you all are coping, the snow is melting, we had lots of rain early today, but I went back to sleep, lol! 

love and hugs to all

Dear Helen,

Sorry to hear about Caz's rash, I was hoping for her sake that things may have settled down for her today bless her, and you love.

Hope you have now managed to speak to her doctor and got the advice you need love, also when Caz woke up things were looking so much better.

My love to you both along with many

Keeping everything crossed for her Helen.

Maryxxxxxxx

Nope, not a call, have been waiting all afternoon, clinic should surely have ended and he's gone home! argh! NHS, argh!!!!

She is still in bed, think yesterday must've exhausted her, a bit of a headache, rash not itching thank goodness, no high temp, feeling 'normal' but tired......has slept a good 10 hours....has eaten.......its been a lonely day!  Kids, eh?! 

Not really sure what to do, if anything! 

my love and hugs to you all

Bless her love, and the b****y NHS how I agree!!!!!, could be he did not get your message love.

Helen if she does not inprove my advice is to get her GP out, or ring the hospital again and see if there is someone there that you can talk to, although gotta a feeling this will be in your mind already. Poor love I feel for you both.

Lets hope when she wakes she is feeling so much better.

(((((((((((((((((((((((((((hugs dear lady))))))))))))))))))))))))))))))

Dear Helen,

Sorry to hear about Caz, and I agree with Mary, "bl**dy NHS".......I hope she wakes up either this evening or sleeps through til tomorrow morning feeling better again with no headache.  No high temperature might be a good sign though.  I remember how Mum, (and even Dad now) would watch me like a hawk when I got a sore throat as she knew the swollen neck glands would swiftly follow..... I think its something you mums do just so well.... whatever our age.

Hope you manage to get some sleep tonight, much love to you both.

Leah

xxx