[eveParticipant]

Hello Everybody

At last thing are moving,after Christmas Slim was told Myeloma in the bone marrow was less than 5%,so SCT to be next step,after appointment at Kings,we were waiting on dates for test after phoning today we now have 5 appointments during March and April,then it looks if SCT in May if everything is ok and Slim decides if this is what he wants.

Now under Kings and will not see his original consultant until May
This is all new territory for us specially London,trying to work out,car or train,any advice welcome,!!!!!

Cruise is a no no as the earliest I could get was end of April into May,still looking just in case last minute one comes up.

We have had wonderful weather in our south east corner of Kent ,but so looking forward to spring and the blue bells. Love Eve

[tomParticipant]

Hellow Eve and Slim

Well am pleased (if you and Slim are pleased) for my Penny's worth for me I am pleased I did the SCT. Good Luck with it all cant offer advice re train or car sorry 🙁

Love to you Both

Tom "Onwards and Upwards" xxxxx

[mhnevillParticipant]

Hi Eve

So glad that at last there is good news. Do hope everything goes smoothly until the STC.

Maybe a last minute cruise will come up. Mind you, after the news today perhaps another kind of holiday might be better! Still, think, after SCT and recovery, there will be so much time for lovely holidays.

Lots of love to you both.

Mavis x

[brochoParticipant]

Hi Eve great news it always feels better when things get moving. Is Slim close to making a decision yet ? It is a scary decision to have to make but the benefits could be immense if all goes well , that just makes it harder to decide though. If you do drive into London there are disabled parking bays dotted around all over the place which you can use with your blue badge The train is a good option but there can be a lot of walking which could be difficult for Slim You could try ringing the hospital to see if they issue parking permits. love Bridget x

[eveParticipant]

Hi Mavis and Tom
thank you for your good wishers.Tom I posted on your face book,don,t you want to be my friend:-( 🙁 🙁

Hi Bridget

Although I originally come from Liverpool,I am a country bumpkin at heart,so London was a bit daunting,Just cannot see Slim coping well with train,all though easier option,last time we went my daughter took us,road works diversions took us all over the place,even my daughter got a bit lost and she spends a lot of time in London hospitals with my grandson.
Have done a lot of reading on SCT,but waiting to see if they are prepared to do it!!!its a hard decision quality over quantity.
The consultant did say the best time to have it,is when you are ill,rather than like Slim,who was very ill and has some quality of life now.

I know the thought of spending up to a month there,is not helping,ideally it would be good if they would take stem cells and wait for any change in remission then have SCT but it,s not done at Kings although they have said they can keep stem cells for up 7 years!!!

So it,s a wait and see game,but looking forward to spring missed it all last year,need to smell the blue bells.Eve

[brochoParticipant]

Hi Eve I must admit London isnt my favourite place either too busy and too noisy , perhaps 30 years ago I would have had fun but not now . I dont drive into London luckily Jeff doesnt mind so he drives as I cant manage the walking and stairs when going by train. Most weeks I am there at least once and every fourth week I go twice a week not my idea of a fun outing. I love spring too it really cheers me up to see the leaves coming back and flowers coming to life Being stuck in UCH for five weeks was the hardest part of my sct , the family werent able to come up after work and friends couldnt pop in either Jeff was brilliant and came every day otherwise I would have gone nuts Do Kings have accomodation for you if you want it ? Hope the waiting doesnt seem too long love Bridget x

[HelenParticipant]

Hello Eve good news for you at last, Can't help with london, only ever use public transport there. Hope you get away, i managed to fit in a trip to France between stem cell harvest and transplant so use that time well!
Despite having pneumonia now I have booked my ticket to New Zealand today and got insurance for both of us- husband only £50 cheaper than me because he has mild asthma:-P.
Love Helen

[eveParticipant]

Hi Bridget and Helen

Bridget I do not know if they do accomodation,but I will ask,I have been told its the main trauma hospital in London,deals with anything bad that,s going down,The easiest solution would be go in one day have test then come out after 2 days of test,I am lucky I have a daughter who lives in Sevenoaks,but last time she insisted on giving up her bed and took us to London,Matty has CP,and she has 2 other children,so its not ideal.85 miles to London from Deal other wise.

Helen I do envy you off to NZ the land of the white clouds,it is a beautiful country,the best way to see it is hire a camper van, you can stay in DOC SITES,I saw more of NZ in 3 months than my brother who,s been travelling there for 20 years.I miss my grand children out there, on Skype my grandson wanted to know why I lived in another country.

Helen if you want any info my EMAIL is on my profile. Love Eve

[HelenParticipant]

Thanks Eve we might just do that. We go for 3 weeks, to fit between trial visits, I'm really excited about it. This time last year I never thought I'd be able to go any where ever again, so I've already come a long way, in my head, so you have to just hang on in there and hope you and Slim get to go again, just think I shall be able to bore you all with my holiday snaps when I get back!
Love Helen

[GillParticipant]

Hi Eve

We live in Orpington and when I visited Stephen in Kings found the train the easiest option 10 minute cab journey to th station this end an a down hill walk from the station to the hospital more difficult back to the station but not lumbered with strange desired morsals of food:-) I hate driving in London and found parking was expensive although I took Stephen by car when he was admitted and picked him up on discharge

Love from Gill

[tomParticipant]

Hi Eve

Posted on my face book? cant find it dont know where you posteandnd av tried to find you and cant 🙁 wot name are you under ?
And I cant wait to be your Friend xxx
ps wot name do you go under and do you have a photo ?? xxx

[BADGERParticipant]

great news Eve

you have had such a struggle so it looks as if there is a bit of blue sky on the horizon I hope the tests prove to be good so that every thing is go for the SCT good luck and kind regards to Slim
Love Jo x

[eveParticipant]

Hi Everybody
Well things are moving fast now,all dates have been moved forward.

Slim was lucky,he asked could he have anything done locally instead of travelling 85 miles to London,so they allowed him to have BMB in Canterbury.
Hoping he might be allowed to have the Cyclophosphamide 5 hr drip also in Canterbury.( fingers crossed ):-P

Off to Kings on Monday for all pre test,decided we would try the new Train,suppose to take 50 min on the Javelin instead of 2 hours.

He is feeling a bit more settled,spoke to a new member of the trials team,who took the trouble to explain a few of his worries.Eve

[RozParticipant]

Hi Eve,

So glad things are moving along nicely for you both…you know what I mean by that so please forgive the pun. Sorry its taken me so long to see this only come on the site now and then, but I'm still interested and care about you all.
Give Slim my best wishes.

Love and all the best
Roz xxx

[tomParticipant]

Hi Eve and Slim

Am pleased that things are moving along at last 😀 , Its good to have the treatment near home am sure all the travel isn't that good when you arn't feeling 100%

The train sound a good idea, and could Slim use his Blue badge to make less costly?.

Good Luck for it all and Give my regards to Slim.

Love
Tom "Onwards and Upwards" xxx

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