Hi Chrissie
I am so sorry for your loss,I am also awake in the early hours wondering what the future holds,we never know what to do for the best, you just try to do your best and try to remain positive.
People who have been through the same thing will reply to you,and try to help you get through this awful time,just try to remain positive,and think about what your husband would have wished for you,Eve
Thank you everyone for your good wishers and advice on SCT.
Still waiting on letter from Kings.!!!
Slim stopped Chemo a week before Christmas and has not been well since,it started on Christmas day,and has gradually got worst,on his last blood test on the 28th his kidney level functions were just starting to rise,so more blood test this week,feeling lethargic and not wanting to eat,I put it down to coming off Chemo and Dex.
Its been so long now since Slim had good health, we do wonder if normality, is ever going to come back, plus that Chemo brain that Tom tells us about, I do think SCT,cannot be as bad as he was last Easter,22 days in hospital then many month of getting him back to any reasonable condition, he has no memory at at all about that period,but still wondering if we want to go back and be in a similar position.
Its nice ,not having the trip to the hospital having to go twice in one day ,and doing it two days a week,saving a bomb on petrol,but hospital appointments are still coming in.
Dai how is your sleeping patten now ,has it improved coming off Velcade???
as you can see from me being on here at 3am ,Slims has not!!! I think I expected some more normality in are lives!!!!!
Heather you do not say how old you are??. I take it you went through,CTD and Velcade,did you have any extra complications???
The people who sail through there treatment,tend to leave this site,understandable so !! I know everyone is different but it does help to give you some in sight to what the future holds,before it was a matter of taking it day by day,but now Slim is in remission or plateaued ,it is looking to the future.Love Eve
Hi Everyone
Its now 2012,time goes so slowly when your young,but as the years pass they seem to fly,so my word has to be
YEARLY I know it leaves RLY
But it seemed to fit into the new year. Eve
Hi Dai
Just been looking at a site about the trials,sounds very interesting you better hurry up with that 24 hr bottle,as I got the impression that it,s only 700 per country.
Those big bottles get heavy,cannot tell you how many Slim has filled plus they are heavy to carry any distance,so as well as the brown bag it pays to use a couple of plastic bags for grip and strength.
Just looked out of the window,to see a beautiful red sky,sorry must go down to the beach to watch the sunrise Love Eve
Hi David
Just watched the video,it does bring home about lack of wards for seriously ill teenagers,as you know,my grandson who has CP spends a lot of time in hospitals,last time because he is now 16,he was put on an adult ward,one side an old man coughing phlegm all night,and on the other side,a man making the most fowl smells,with my daughter in a chair doing 24 hr shifts,for 3 days,
So yes what this young lady achieved in her short life,is her legacy,she left behind something to be proud of,but I bet no one thought of giving her MBE for all her work. Love Eve
Hi Sarah
Just looking in ,could not help with headaches ,but hope the consultant helped on the last visit.Eve
Hi Gina
What is a fright night ????
Glad to see you are getting on with your lives,it,s hard but it is what your mum would have wished,remember you have good memories there,and that is important,i found the worst thing in the early years was wanting to pick up the phone to tell my mum some news,that,s what I found hard.
But life goes on,and that,s the way it should be,her legacy is her lovely daughters. Love Eve
Hi Dai
So sorry to hear your news.All your hopes built up then crashing down again,this is what we felt when Slim was on CTD one minute on are way to remission with kappa light chains at 10,bone marrow taken for trials only to be told when we saw consultant,that he was shocked to find it had gone up to 80% in bones although kappa light chains were showing a low reading!!!!!!
You know Slims story from there,HE has had 4 BMB but well worth it for peace of mind,and that now this his bench marker,he looks on them as a necessary evil,but he just finds them uncomfortable.:-(
I find it hard to believe they can just rely on kappa light chains plus blood results for remission,I know MRI scans are expensive,but at the end of the day it,s your life,they also have PET scans to show activity.Seems it comes down to money again.but we have had this discussion before.
I can understand Janet being in pieces I was struck dumb,that,s unusual for a chatter box like me 😛 ,hang in there Dai build your strength up as Slim would say you can hack it.Love Eve and Slim.
Thanks Everyone
For all your support,It is such good news,which has taken a long time to get to this point,but it is lovely to be here,sound a bit stupid,but at times just could not see the light at the end of the tunnel,so its good,good and even better.;-) 😎 🙂
I cannot help thinking about some people who are not posting like Sharon who was on Velcade and in the same position as Slim who went to Birmingham for PET scans has any body heard from her????? tried to contact her to no avail.
My special thanks to you Min you kept me going when times were bad, I know how hard it has been for you and I hope you will keep going forward and opening those doors.Love Eve
Hi Glenn
I originally am a scoucer,so I know that Clatterbridge from the start has all ways been a designated Cancer hospital,so you are in good hands.
Slims on the Velcade with Dex and Cyclophosphanide. VDC for short,as you progress with Zometa you will find you can do more things,iam all ways nagging Slim about doing to much,his answer is I have to try to do it.so do not worry about your partner its only because she cares because you have cancer does not mean,the usual disagreements do not happen,in fact I think you will find,it gets worst because as a carer you get so scared,you want to protect your partner.
Do not forget the Dex causes all sought of mood swings,I had to keep reminding Him,he was having a dextatude moment plus the Velcade made him very anxious ,he could not explain why so you do have to take all this into account.:-0
Without sounding awful,I feel my life has been snatched away too,and I do occasionally feel sorry for myself,I consider that very normal,but it does also make me feel guilty,so there is a lot of feelings you do have to come to terms with:-(
At my worst I found myself very angry or tearful so went to my doctors,and yes I pop a pill mainly to get my emotions under control,you cannot keep shouting or crying when things are bad and things are going wrong.
So just remember all these things are normal,I now go out,every day on my own,walk the dog,coffee,or lunch,chat with a friend,I also meet up with Jenny on this site who,s husband has Myeloma and that has been a bonus,there are not many people in Deal my home town with Myeloma and the nearest support group is 60 miles away.
If you have a support group near you my advice would be for both of you to go,even if you do not think you could join something like this.It does help your wife might find someone to help with her burden.Love Eve
Hi Everyone
Thanks for your wishers,I know it,s just the start,but to us its a light at the end of a very long tunnel.
We will go to kings,and see what they offer on SCT but we know how the consultant feels,but as he said Kings do hundreds and they are the experts.
We are still piled up with appointments so no travelling yet,hope to be able to book a short cruise from Dover before we have to make any major choices on treatment.With still being on trials the next step is after SCT or not.You are then randomised for no treatment or a low dose chemo drug,So that will be the next major hurdle.A computer has Slims life in its hands.LOL,but we can always come off the trials at any time.
I would be grateful for any input concerning SCT as even if Kings say yes to it,we are both concerned by the length of remission,we hope to get some facts and figures to see if it,s a viable option.Also the quality of life that can be expected.
love Eve
Hi Bridget
I think you would be good as our resident expert on financial matters on this site,at our hospital there is no information except a notice board note telling you to get in touch with macmillan office.I tried this when Slim was in hospital,never received a reply,made me so angry it put me off trying.
later applied for,some surpport,to cut a long story short 6 weeks passed heard nothing got in touch with the person I dealt with,had to start process again,did not get it back dated all the way,just did not have the fight in me to appeal.In truth,I needed far more help in the early days,and that,s when it is never there.
So change your carpet to red,and enjoy your moment of fame as to the big brother house too tacky for a lady of your quality.Love Eve
Hi Heather,
I have to ask where have you been,no insult,but people like you can be such a help on a site like this,we know from other people the NHS are not the best when it comes to there own staff.
If you want a honest answer from me,both of you retire as soon as possible,
I know what you are thinking,it,s not about money it,s your quality of life,do not have any regrets!!!!,
Life is to short Eve
Hi Pilgrim
I would agree completly about banks,many many years ago,I was desperate,saw my female bank manager who had so much faith in me,these days its computers or the legal department full of kids out of uni who decide you fate.God Help US.
Its just having the energy to fight the battle,when you have enough to worry about without banks trying to take advantage of you.I was so angry with one bank manager I told him to stick it were the sun does not shine,As you can imagine I am no longer a valued customer!!! LOL:-)Eve
Hi Glen
My name is Eve I know Clatterbridge ,good hospital for Cancer,going back years live in the south now.
It is a bit of a shock to the system,CTD is the first chemo ,never heard of PAD but there again my husband is on Myeloma X1 trials so next chemo was Velcade,but it is a bit of a post code lottery.My hubby is still trying to get Remission,did have 80% Myeloma in Bone marrow plus tumour on spine and lesions on skull and should blades ,has reduced BM to 10% with Velcade.
Nice to see you sound so positive,its a long journey,we have been travelling over a year,hubby has had a few blips along the way,good luck on your journey Eve
