Hi Eva and Sue
As you know slim is in the middle of his SCT.
He went in on a Sunday, only 50% of chemo given on Monday,the next day was a rest day,them harvest fed back.he is not recovering very quickly a bit at a time,he has had his own platelets plus some more plus injections of growth factor.His platelets stood at 7.5 last time I asked.
My concern has been the constant wretching and lack of wanting to eat and drink,I was concerned it was Slims Kidneys,but the boss man tells me no.Said he should improve Saturday or Sunday,now they say Monday.
I asked a number of times why they fed harvest back when chemo was still doing its job of killing cells,one reply was good question,never asked that nurse again,another reply was they did not want the body to get too much damage quick in and out chemo flushed through as quickly as possible said this would do the job,each individual has there own package and this was Slims.!!!!!
14 days now and i am getting concerned that the progress is only slightly improving and some days he gets knock backs,holding out for NO tube but very little water or food being taken.
Hope this is some help.Love Eve
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
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
Hi Sue
I understand were you are coming from but it will do you good to have a bit of me time,feeling guilty about it is natural.
I am very much the same I spend a lot of time in the hospital with slim,it takes me 1hr to get there,buy the time I get back my day is finished,buti am aware I will have to pace myself as I will not be. Much good to him when he comes out.
You will just have to fell yourself he is in the next best place to be looked after,and plan to see a good friend for coffee next time.
Sue you have every right to feel sorry for yourself,I would recommend a good bottle of wine,but it comes at a price a bad head in the morning. Love Eve
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
Hi Paul
Sorry to hear Velcade did not work,I think Andy G had the same treatment,may be it is an age thing as you produce more cels the younger you are ???
You must be feeling a bit down,it,s easy to tell you there is something round the corner but your options are getting reduced,I know some people have had SCT with a higher count might be worth asking the team.
Good kuck with DT Pace. Love Eve
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
Hi jacque
My husband is in Kings having hit SCT at this moment,just getting his platelets, dong fine but is having problems eating,has come out with a rash on his legs but it does not seem as bad as I expected.
I think he has his low points in the morning,build up of throat over night plus feeling sick and rushing to toilet,expects to be like this until the weekend then we should see some improvement.
We have been told it's the boardom that's hard,so bringing in scrabble tomorrow.best wishers Eve
Hi Sarah and Henry
Well done to both of you,Henry is doing very well it only seems like the other day you joined the site,and there you are SCT over thinking of going back to work and doing the race for life.
Well done keep the good work up,Eve
Hi Helen
A beautiful place and its nearly winter there,I enjoyed the peace you do not have the flight paths or the motorways.
Slim and I next year,hoping to do Christmas but will have to see.
Have a lovely time. love Eve
Hi Roz
So glad to see you are moving on with your life,it is hard when there is so many things around you,but it,s true what they say life goes on,children seem to bounce back,they have there own friends they can talk to about it and it is hard for anyone to take on anyone,s grieve .
Although i am here to help with my daughters grieve,we do not talk about Matty its to raw,so we just carry on with are lives.Slim in hospital having his SCT,the sisters looking to go to guide camp and mum and dad coping the best way they can.
That is life and it has to be lived other wise every thing that has gone on for the last couple of years would be a waste.Love Eve
Hi Antoinette
Welcome to this site,we will help you all we can,there are lots of people on here who have been through the same thing as you,or who are carers to those people,it is very scary all the information you have to take in,medical jargon and worry.
Try not to look to far ahead and take one day at a time,forget SCT for now just try to cope with your treatment.
When you say about SCT through your chest it sounds awful,when it,s not,they put a line in between your should and breast,and its just like having bloods back,they use it for meds,plus fluids,so do not think that far ahead yet,it could be a long time before this goes ahead,and by that time you will be use to having injections and medication.
You will need support around you,and you can get advice and help,so ask at the hospital. Eve
Hi John
Yes it is way down the list of side effects,and as you say may be men do not like to mention
It.Slims never been shy in that department.
Once Slim had antibiotics he was fine,he started bad P&N after he came off Velcade,but when he came to Kings they upped Amitryptiline and now his legs are fine.
Doing well at Kings I am having problems with the smell of sweet corn I feel it's invading my cloths it's so strong lol.Eve
Hi Jean
I think no matter if you are expecting it,everything seems like a bit of a blow as you have said 6 years is good. Every day is a new learning curve, in time it will just seem normal. So try not to worry,we have all been there before you and will help. You on this journey.
Frank has been caught early,so he does not have much bone damage and that must be a bonus.
As for G&T Slim went off all alcohol,but everyone is different. Holidays is the big one they do not like you going abroad!!!
With a little bit of luck Frank will sail through this,I found it useful to get blood results every month,and you can see for yourself if there is any change,as Jo says the Dex is the big thing,it does have an effect on the body,if you feel Frank is not well,make sure they take it on board at the clinic,plus when he has his Dex moments,make sure he knows it is him that is having a Dex moment.
Jean make sure you look after yourself,it can be very tiring.love Eve
Hi Jo
Glad to see things are going well for you,sounds if you had a lovely time.
Better get planning another holiday as you have another 2 months clear.Love Eve
