[tomParticipant]

Hi Dai

Those hours asleep post Dex is pretty good, going back to when I was on treatment I got sleepy Pills (just after SCT as i could not sleep only took about four and Elaine pushed me into it 🙁

Yes we have had a lot of Bad news on the site but looking at our nearest and dearest how they have and are beating all odds and now are "Onwards and Upwards" 😎

Its time like this that we all need to hear about good times from everyone as it also perks me up no end 😎 But at the sad times thats when we are MOST needed And I for one hope its a long time before we are Most neede again

Tom "Onwards and Upwards"
Ps Well done on the Song 😀

[eveParticipant]

Hi
Well I have to say Dai I feared the worst,Slim has no memory ,so he has no fear,he goes into this hoping for the best,his decision ,up to now I have felt positive,started procedure only to receive a letter,with appointment for cat scan,how can they start this and then decide he has to have a scan!!!,they want us to travel 86 miles to sign a piece of paper,feel if I am loosing the plot,I think when we go up to London next Friday,I will want answers as,i was surprised at lack of test done before decision of Slims health was considered to be fit.although I asked about lack of test and told everything would show up in blood taken!!!!!:-P

I think I have questions to ask?? makes one loose confidence in the procedure or is this just me being eve???? Love Eve

[tomParticipant]

Hi Eve

Yep I think its Eve just being Eve 🙂 but if you wasn't Eve Just think where Slim would be now

You carry on being you it will do Slim good and when you ask questions you will feel better when you get the answers.

As for me prior to SCT I had a heart and Lung fitness test :-S but i had all the other scans in early days of treatment.

Shame about the long trips you have to make.

Love to you both

Tom "Onwards and Upwards" xxxx

[eveParticipant]

Hi Everyone
Well Tom it,s good to know I am not a deaf grey haired old lady and Slims not got a Complete chemo ,brain.my daughter came for the first meeting for a SCT and she confirmed to me its not panning out as explained.
Explained to us as 2 consecutive day of test,then decisions ,then cyclo and injections then harvest then SCT.

After the initial meeting at Kings.
Went up for chest xray,cardiac monitor and lots of blood test
OK,d on phone, third visit chemo and given injections for 7 days
Due in Kings on Thursday for Harvest.
Since then we have received two letters for 4th and 5th
one for cardiac trans thoracic echo and one for CAT scan
This is in all 6 journeys round trip each time of at least 150 miles

They actually wanted to make it 7 journeys they wanted us to travel to kings to sign a consent form they spoke to Slim on phone who asked them were they joking,and refused.we have the date provisionally for SCT as the 12 of April.

I would have thought with all the knowledge of the last 14 months,these test would have been carried out before ,preparation for harvest,just told doctor ordered them after first test.

So were does that leave Slim:-S,Is this normal,it does seem to me a bit,back to front.

Would be glad of any in put from people who have had SCT. Eve

[tomParticipant]

Well Eve you certainly aint any of the above 😀

As I said in Last post I had mine all done prior to SCT some at the start of treatment some nearer my SCT , but am not sure anyone can say whats Normal with our Consultants (as good as the are) they all work in a different way.

Good Luck and hope you and Slim dont have anymore Hiccups

Love
Tom "Onwards and Upwards" xxx

[OutdoorsPaulParticipant]

Hi Eve
Unsure if I have read your e-mail right but here goes.I have received my letter for SCT.The process explained to me is as follows.
I had tests for heart,lungs and CT and MRI and only one still to do is a dental check.That should be fine as i go often.
My cyclo priming is on 14th May with harvest due 23rd/24th/25th May at St James Leeds (jimmy's)
My travel time is not as far as yours maybe 40 miles round trips,seems they should try to do as many tests on one trip for you guys as possible.
stay positive and keep in touch.
love paul

[HelenParticipant]

Hi eve I'm with Paul on this one, ring your specialist nurse and ask for all the screening tests to be done on one day, it should be possible.
Up here we don't have the cyclophos priming, just the heavy duty gcsf then harvest, when that is done ok the transplant date is booked about 3 weeks later so that you can recover a bit before sct. Hope it goes well
Love Helen

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