Hi Everyone
Once more in to the breach,and hoping to clarify and expand this discussion.
The hospital i go to has a specialised haematology dept that is taking part in Myeloma Trials which Slim is on.
When on trials you have to follow the pathway,but you can come off trials any time,and you can be removed of trials if they think you are no longer suitable.
In many ways as you go down this pathway it is also a learning curve for the trial team,decisions,are made as a team,not by one person,if your file goes into a meeting on a Friday for EG: good or bad results,they have a meeting and decide the action to be taken.
This is not the problem,I do not think if i lived in another part of the country,it would be better for Slim.
It,s the hospital that is so poor,the standard and condition of it has a lot to be desired ,the whole cancer unit and one ward connected to it and staff are second to none you cannot fault the dedication of the staff.
One its the amount of cancer patients it serves to many for such a small unit,leaves the staff always doing catch up.
Other departments in the hospital for example pharmacy leave a lot to be desired no matter were you are, but specially cancer patients wait hours for drugs,because they are cancer drugs you cannot go and collect them yourself,nurses are wasted having to go and collect them and having to take the wrath of patients who are kept waiting for hours.
If you end up in hospital with an illness that stems from treatment you are not treated as cancer patient A&E first then general ward,this is were the treatment goes wrong,no co-operation,no understanding of Myeloma,hospitals not clean i could go on but i am sure you get the picture.
So you have a good cancer unit a good ITU,and the rest is c-r-a-p.this is why you have cancer patients dying because of lack of care resulting in infections ,DVT.NP to name a few.
As for choice of Treatment for Myeloma,I do not think,there is much choice,I consider the consultants hands are tied ,by NICE,and there best options for patients are the Trials,and are lucky to be on them.
The lack of knowledge about treatment stems from not having time to keep patient informed ,I consider to that extent I am lucky because I do ask questions,and get answers,only sometimes I do not know what to ask. EG: Sharon said about having PET scan done instead of bone marrow taken,all new to me?
I do realise Slim differ,s slightly as now his condition kappa light chain myeloma does not show true readings of his condition,he still has usual test done,but after having 6 cycles of CTD the Myeloma had gone up to 80% in marrow,although kappa light chains were starting to show remission.IT surprised the consultant as well, hence VCD 8 cycles bone marrow taken after 4 cycles.
I do feel Jo,s sword of D-amocles is hanging over us.
It has got to the point do I want to know ?
In one hand Slim is looking better,but considering the condition he was in,he should be looking better,people still blank him because they do not recognise him.14 weeks is a long time to wait,to know if the treatment works,most people can tell from pp or kappa light chains.we cannot.
Hide sight is a wonderful thing,I wish I had it now so I could stop any pit falls we make.We only have each other to learn from and hope there is someone ahead of you that can help you along the way. Love Eve.
Hi
Good to know you are ok,hope everything goes well on the last cycle.Let us know how you get on 🙂
My beautiful white carpet did not enjoy Slim being sick on it,have used bleach but still looks iffy,helped make my mind up,so hall and lounge will be replaced with laminated looking like oak.
Could do without this,but when you are stuck in looking at it,it gets on your nerves:-P
In limbo now,finding it very hard,will have to wait for end of 4 cycle,trying my best to be positive, I do not make good company at the moment,so trying to keep busy,hoping to get away while floors are being done.
Eve
Hi Gill
Daily mail Wednesday Money Mail you look for Page 55
E mail asktony@dailymail.co.uk
daytime phone number postal address and separate not addressed to the .offending organisation:-)
Hope this helps. Eve
Hi Dai
Have done it again haven,t I,Dai i am not talking about your ignorance far from it i look to you for advice support and anything else you can throw my way to help me understand this dreadful MM,and what is available, so very very sorry,its my ignorance of every thing,that,s in front of us.
So accept my apology .Eve
Hi Gill
Just found the post were you ignored me!!!!,how dare you 😛 LOL, some one forgot to tell you scousers are thick skinned but are softies in side 🙂
Seem to be missing post these days,but what I have noticed is that you are taking Stephen,s results very calmly.
Gill you must be worried,I have noticed those early morning post when you have time on your hands,I call it my time,as it is the only time i am alone,gives me time to weep and get things out of my system,before I start a new day,with a smile on my face.
Although saying that Slims started taking over my quiet time as he cannot sleep on Velcade,bit like passing ships in the night,at least the Dex gives him his energy back through lack of sleep,
Post soon let us know how you are getting on Love Eve
HI Sharon
You have not been on site for a while is ever thing ok i know you do not post much,but you must have finished Velcade now.How are things going:-S?
Slim on 3 cycle and a bit in Limbo as,no results coming through as decided bone marrow to be taken after 4 cycle.
Slim has not got the pain in his chest any more,and except for the odd blip,is doing ok,having new floor after Slim decorated the last one:-P decided it will have to be laminated easier to clean.
I know we are playing the waiting game,but what about you!!!!
Dai has just had good news!!!
Hope your not keeping,you news to yourself,because its not what you expected;-)
worried about you,been waiting for you to post.Love Eve
Hi Everyone
I will not bore you with general details except to say,husband started on ctd,now on velcade and looks if he will not be offered sct.
My point on this,is we were told he had Myeloma told about Myeloma trials and felt we had no options,asked if we had any questions,how can you ask questions if you do not know what to ask.!!!!
Since then I have taken it on myself to find out every thing I can,not easy when you are a full time carer to a very sick person as Slim was in the early days.Septic pneumonia 22 days in hospital,with me doing a lot of the care myself in hospital.
Hind sight is a wonderful thing,would I change any of the past.Answer YES.
1.I should have asked about different Myeloma,s did not even know what one he had and no one bothered to inform me!!!!
2With Slims medical history of family who died of DVT he should have had injections from start,this was not done until he came out of ITU and did not respond well so CAT scan done only to find Massive lung damage and lots of blood clots.
3 Now in Limbo,on 3 cycle of Velcade,told light chains are stable,do not know if Velcade is working and will not Know until bone marrow is taken end of October.
4 So 12 to14 weeks will have passed,without knowing if Velcade is working,
asked about PET scan,answer will not tell them what is going on in bones,had MRI scan,no change,but there should be change!!!
So we carry on not knowing if Velcade is working,not knowing what questions to ask,Hind sight is a wonderful thing,in stead we are suppose to trust them.Well sorry as an outsider looking in,I find the whole process wanting.
I also think there is some thing on my husbands File,that says watch out for the wife!!!! Eve
Hi Everyone
How about
HENPECKED
I know I leave you with the same end but Slim tells me i keep doing that:-) :-/ :-S
KED
Love Eve
Hi Shir
Nice to see you keeping your chin up,would drive me mad too,Do not know if your are on face book,but they have scrabble on there ,and now i find myself
in the house more ,I play alot,also Slim plays to keep his mind active,I agree completely would not be without my lap top,use it to skype a lot,shows when friends are on line,so pop in to have a chat,cost nothing so it,s great.
Info day for me is London this month,cannot see me making it,Slims not keen,its a good 80miles and then getting through London and travelling back,also its on 2 week of cycle,which is a 60 mile round trip each time as we go twice once for bloods,home then Velcade afternoon:-P
Between falling down stairs and then this host verses graft you deserve a bit of a break,hope you are not stuck long on oxygen and get out there and start to enjoy your remission. love Eve
Hi |Girls
If i may call you that.My kids are terrified when I drive because if they talk to me,I have to take my eyes of the road,even my son-in-laws are scared.LOL.
I wish I could wave a magic wand and take all your pain away,but it,s not going to happen.
Life will go on and each day you will find some thing to smile about,I hope you will all be survives and live life to the full,and also keep posting.I know I think of you as Roz Sarah and Min,not wives of people who have died.
love to you all Eve
Hi Everybody
Zometa is known to be very effective on bone damage,usually administered once a month to strengthen bone with Adcal-D3 once a day.This has worked wonders on Slim,who could not even lift a carry bag with one item in.
Now he is on Velcade he has Zometa every three weeks,but Myeloma is 80% in marrow,
I can only say doing research on it,it does seem very effective and quick to build on any damage done MRI scan does not show massive improvement,but no more damage considering MM gone up to 80% in bones.
We are in limbo at the moment as will have to wait for bone marrow results,to find out were we stand,getting to the stage do we want to know!:-P
Slim is as well as can be,enjoying life as best we can.Love Eve
Ho Dai I am so pleased for you,I hope tonight you are sitting there with a big grin on your face,must feel like winning the lottery.
Only this is far more important,and more worth while.
May you enjoy the freedom this gives you.Love Eve
Hi Debs
I do feel for you,they treat you like you are thick as two short planks,and wonder why patients loose there respect for doctors.
I had a problem,with a doctor last week,in the end I told him I was standing my ground,as i new when Slim was not well did not go down well:-P but worked.
Same doctor couple of hours later could not have been more polite,issued tablets and accepted in the circumstances,with Slims lungs,antibiotics would be given.So may do you some good to throw a paddy,Eve
PS.i was polite but firm
Hi All
I love all this glorious weather we are having,it is a real bonus,it makes so much difference to our days,people walking round with a smile on there faces , i just wish it would not end.8-)
I love that Slim has decided he wants to go out as a family for his birthday,one daughter will be missing in NZ.to me it means he is feeling better.:-)
i love the fact that so many people are joining this site,and bringing their experiences,and hopes with them,long may it go on,helping each other through the good times and bad.
Love Eve
Hi All
Nice simply one
STICK
ICK next love Eve
