[eveParticipant]

Hi Everyone

Slim had harvest back last night and is doing fine,sick a few times plus hard to keep tablets down,very tired but much better than I expected,nurse has arranged a pump if he continues to be sick,plus having lots of fluids through drip. It,s the smell thar is getting to me I think it,s put me off sweetcorn for life.

I am very pleased with Kings and the staff are excellent they take on board what you say,so things are going well.
Tomorrow Matty,s school is having a memorial service for him,I am hoping to go if Slim is ok. It will be lovely to see all Matty,s school chums plus hear all about his wicked sense of humour,I wonder were he got that from,I think it runs in the family.

Hope everyone is keeping well,we are going on wards,saving the upwards for a little bit later love Eve.

[tomParticipant]

Hi Eve and Slim

Yep the smell is different am pleased Slim is doing good, I was given Anti Sickness pills when i had my transplant and was on them for about two months after.

I hope you get to Matty's Memorial Service and as for the wicked sense of humour I know where that comes from 😀

And Eve dont talk about the "Runs" just yet I know they will arrive soon (hope Slim has spare pants Plenty of them :-/

Love and Hugs to you both.

Sending a bit of my "Onwards and Upwards" to you xxxx

[zasrsParticipant]

Hi Eve
Just read your post, I so hope slims sct is still going well. Gordon went to kings for both his sct, the second time round I thought the staff much improved, and the care so much better, his cell also has several cleans. Not so keen on some of the aragant young drs though.
Good luck and I hope slims continues to do well.I won't ask you to give my love to Kings, I loathed the place but they did give Gordon 9 years extra life I should be more grateful!
Best wishes Sarah x

[DaiCroParticipant]

Hi Eve,

I hope all is as well as can be expected at this stage. One tip… try and encourage Slim to take on fluids. I know it is difficult, even water tastes vile and is difficult to swallow in anything other than small sips… but the alternative is the fluids by IV… which means being attached to the pump and stanchion. This means that every visit to the bathroom means unplugging the pump, wrapping up the leads and finding the best path to the ensuite. So enforced water torture should become a persoanal challenge, one I am certain he is up to.

I concocted several associated 'events' with points for times etc., my SCT olympics which amused me (and hopefully those who read my blog) – but sometime, during the mid -SCT section (four days or so in my case) the fun element was replaced by real urgency.. and then the whole process became anything but fun.

Slim will have to develop a mindset of 'whatever it takes' with a temporary suspension of dignities and standards. Incidents and accidents will have to be borne as events outside of his control and accepted as such… they are highly unlikely to occur again outside this procedure… not until the next SCT many years down the line.

Slim is now well on his way.. no going back now but it really will be over very quickly… the morning the magic marker of 0.1 or above is returned means the the whole process has worked… and as long as the other crucial bloods (neutrofils, platelets etc.,) rise in tandem then 0.5 means preparation for home (I was made to stay an extra day for my platelets to reach an accepted level).

I was home 17 days after receiving the Mephalan… Stem Cells back on day three… 'sticky patch' days 9 to 12… 0.1 on day 14 and home on day 17. 😎

Simples (ish).

Much love to you both my friends.:-)

Dai.

[BADGERParticipant]

hello Eve

good to hear slim is not doing too badly fingers crossed all keeps going that way and he gets the remission you both deserve. i hope you can get to mettys memorial and you dont get too upset this is a bit like teaching you to suck eggs as i am the worlds worst weeper i get emotional at the drop of a hat kind regards to Slim
Love Jo x

[eveParticipant]

Hi everyone

Well Dai Slims mind set is never again,told him it,s a bit like having a baby will forget the bad bits,(no sympathy).

In Kings they keep them in for a month no matter what,so he has been warned as to drips,I can count three at this present moment plus pump,they do not do ice and do not encourage any food other than hospital food which not only looks foul,it,s just to much plonked on a plate,when he was in the other ward that had a kitchen cooking treats it was much better, on Waddington the person in charge,does not speak good English,so half a scoop of ice cream comes back at 3scoops.lol

Cannot fault the nursing side,they are on the ball,ops being done ,doctors brought in when temp goes up,cannot eat or drink,sleeping most of the time,told them to throw soiled cloths away. Should start to pick up by the weekend.

Jo I did not make Matty,s memorial. My daughter said it was like another funeral,they do it for the children,as an awful lot will not reach adulthood,the children see a good side to dearth, Matty should have had a full life span according to the doctor,s,so it was a big shock.

I must admit I had my doubts about Kings but give them there due,I find them better than Canterbury, the doctor,s seem to take on board what I say even to the point of getting as saliva orthana that helps when your mouth is very dry.

Tom I am glad I kept all Slims old underware they have come in handy,taking them home would have guaranteed a seat on the train with plenty of space around me LOL.

I am a bit worn out ,but Slim likes me to help,in truth this is easy compared to his stay in ITU and Canterbury ward, I trust the nursing staff on the ward,and that goes a long way in my book. Love Eve

[ElizellenParticipant]

Thinking of you both, Eve and hoping all goes to plan without any "exciting" stuff happening.

As my hubby does not know how to set the washing machine programme dials correctly (he just puts in the clothes and hopes for the best) I decided not to trust him with any laundry of my clothes so I spent my entire 5 weeks clad in hospital kit!!

Do try not to wear yourself out doing too much when not visiting Slim, and take care of yourself.

Love from
Eliz
XX
X

[tomParticipant]

Hi Eve and Slim

Well Eve this post made me Lol (its just like having a baby lol)

And as for the water good lord I did struglle to drink the amount they wanted me to and the drip for me was far better, yep it was a struggle to unplug wrap cable up and find a FAST way to the loo (failed many a time but hey ho it gave my nurses a laugh to see me blushing Lol)

At Castle Hill in Hull I had a great Lady who had the "Kitchen" for us ((5 rooms all set up for SCT))and she said have the full monty and some ? because you will soon not want to eat so the more you fill yourself before the mouth gets bad the better.

Eve My Undie's were new (ish) but I wasn't going to take them Home for my young bride (Elaine) to wash so binned the lot Lol

I am sorry you didn't make Matty's Memorial but am sure you all have your own memories that will bring Matty into the conversation over the years.

Elaine also was buggered with working and visiting me over my 16 days In Castle Hill, I told her not to come with Family and Friends and that way Elaine could have had a rest but she said NO so every nite Elaine came.

Please give our Bestest to Slim and Love and Hugs to you Both XXXX

Love Tom and Elaine xxxx

[tmcParticipant]

Hi Eve
Thinking about you and Slim and wishing you the very best.
My husband was in isolation for a month when he had his SCT and it can be very tiring, stressful, worrying, so do take extra care of yourself.
The lady in the next isolation room slept in the room with her husband as she didn't trust anyone. I guess we all have to do what we think is right.
This time will pass and Slim will have a good summer ahead of him and both of you can relax and recuperate and slowly life will be good again.
Do take care and you are both in my thoughts
Love Teresa

[eveParticipant]

Hi Eliza

How an earth do you manage with a husband who cannot use a washing machine,!!!!

Teresa how are things going with you, I hope you and you husband are finding some quality of life,try to hold on to the thought the experts are not always right,some times you must have goals and dreams to hang in there.Slims goal is New Zealand,we have been once,I would also like to do the figure of eight around Austrailier,but it has to be with Slim.

Tom I am glad I made someone laugh, I think it does you good, Matty would have been laughing his head off if I told him about grandad,his favourite poem was Winnie the Poo,hid Dad read it out,unless you guessed the conection ,it would have seemed strange for a 16 year old. Must admit the joke is at Slims expense this time not Winnie the poo.

Slims picking up slowly,but his hair does look like a moth eaten White mat wonder if he will let me near him to take it all off??? His poor dog will not know him!!!

Anyone heard from Bridget???

Eliza I hope you are giving your husband some lessons in how to use a washing machine lol. Love Eve

[mhnevillParticipant]

Dear Eve

I'm so glad, that after so many hurdles, Slim has at last had his SCT. Another few weeks and he will wonder what he was worrying about as he looks forward to his "new life" and that trip to New Zealand.

You know we are all rooting for you both.

Lots of love.

Mavis xx

[tomParticipant]

Hi Eve and Slim

Am sure Eliz will cope re the washing machine as my Young Bride has coped for over 36 years with a mere Male not able to use a washing machine? I fix it when its broke (if poss) and drag it out and take to the skip if i cant fix it so all I ask is the Young Bride is able to use it lol, and to be fair am same with telly/dvd/video and games consul's I set them up show The Young Bride/Grandkids how to use them then Forget myself lol gosh am a strange one i am lol.

As for my hair I let the Nurse shave mine the day it started to fall out? but dint have much to do as the middle had gone before lol.

Love and best to you Both

Tom "Onwards and Upwards" xx

[tmcParticipant]

Hi Eve
I am sure you and Slim will make it to NZ again after the effects of the SCT kick in and make him feel so good and push him into remmission.
We are fine thanks Peter has been put on an arm of the pomalidomide trial to try and slow the MM from spiraling out of control at an alarming rate and methadone has been added to his mix of pain killers. So at least he can move about a bit, just a few steps into the garden but that's good for now.Our long term goal is to see our son's little boy enter the world Oct 01 or short term goal is get to the end of the garden before the pain is unbearable and enjoy the birds.
Hope you manage to get Slim's hair cut and then it can grow back nice and thick and black, can you believe that is what happened to Peter, I have thought about shaving mine to see if the same thing will happen.
Take care of your self and look forward to a great summer I an thinking about you at this time
Love Teresa.

[eveParticipant]

Hi Teresa

I cannot think of better goals to aim for than the birth of a child and as we are. Both twitchers in a small way,it's lovely to see the birds in there mating colour,s not that we have any exotic birds around us,it's just nice to watch there behaviour.

At least they are keeping the Myeloma from rampaging which will buy you time,plus give you mind time to accept things.

Deep breaths and lots of love around you helps. Love Eve

[eveParticipant]

Hi Tom

You have not walked down to Tesco,s and watched all these men standing there unable to decide on the washing powder to buy!!! Lol .I have a confession to make Tom I have not ironed for over thirty years and very seldom use the washing machine,Slim thinks I do not do it good enough!!!!,so that's the secret never be good at doing it. Lol

Slims still very tired expecting improvement on Monday,

Love Eve

[Author]

Posts