Dear Gill
What can one say,sorry does not seem enough,The only thing I can say is I believe no one dies until they have had enough,and there seems to be acceptance of death,
If it is any help to you I try to look ,at are life together and think of all the good things we have done,and when i look back I consider that we are very lucky people,I hate the fact Slim has this mm,and its turned are lives up side down,But there is always someone worst off than you,
Saying that do not let him give up,enjoy every moment,you make sure you post when you feel down I am often up in the early hours,its your time,to get this out of your system,so have your cry and in the morning put on that big smile that will keep him going. eve
HI Everybody
Thanks for the info on Maxi-Joule Bridget,I tried doctors for a product you could sprinkle on food,told only certain products on nhs.E Mailed one manufacture who sent soup samples through to district nurse for me,not very nice.Will try this see if it works.
Perkymite I would give anything to see Slim drink,a glass of wine or even guinness,have tried port,irish cream,brandy all to no avail,from a man who drank like a fish,he has not felt like a drink for over 6 months.Doctor told him he could have a drink,and he often feels like one but one taste and it is wasted.Its the same with food,the dog and I are getting very fat:-)
Last weigh in he was 11st 3Ib height 5ft 8in,before illness 14st,height 6ft 1in.Need to find something to build him up,It,s hard work as he hates any kind of fuss,I,ve turned into a nagger:'-( >:-(
HI everybody
Thank you for confirming all those side effects poor Slim going through the lot, hard to watch at times.The only thing he has not done is put on weight,in fact this worries me,tried every thing,he cannot stand any of the soups and drinks to build him up,and his food intake is very poor,says he feels full all the time,would be grateful for any ideas
On a good note he is very good with fluids managing lots to clear his kidneys Having another bone infusion the end of this month so this should help with bone pain.
eve
Bridget
Peace of mind,goes a log way,it,s not just the money side of it.It is being treated if it is nothing to do with you after living together so long.The bottom line is you have no rights.
eve
Hi Sandie
Sorry cannot help with pp levels.all different,can say the x-ray the whole head,It is all put on the computer and will be there for your appointment.I know this as my partner has lesions on skull.It shows up better on ordinary x-ray.The mri scan shows better on small bones,they do not x-ray hands or feet.
Hope this gives you some peace of mind,eve
HI jo and gill
If truth be known I am making a honest man of him LOL.I use to tell him during are heated moments that I would marry him just so I could divorce him.
For years everybody thought we were married,just presumed,with Slims illness I have found I have had to justify myself,Having to explain are arrangements to strangers,[new laws on disclosure] writing letters to doctors hospitals,companies concerning finance,banks.You basically have no rights in the eyes of the law.If anybody out there is in the same position I suggest you look into it.We thought we were well covered with wills and power of attorney,not so.Simple things like not being able to get to the bank has problems.My doctor even insisted on a letter for me to ask about results of test,30 years I think he is covering his back[may be he took legal advice because of mis diagnosed condition.!!!!!!]
lesson learn,t for me anyway,as perkymite would say onward and upward,your never to old to have a learning curve,just did not think it would be in this direction.
We were planning nz for 6 weeks,then in June Norway Sweden and Finland for a few months,the honeymoon will have to wait more time to plan it for 2012
have a good day everybody.
ps.Thanks for the advice about rings,I have been wearing my mothers wedding ring for years,and I did not fancy exchanging rings,thanks
Gill
Engagement rings were easy,every time he got a tax rebate,we had a renewal of are engagement.I know what you mean about France,the property is given to the children you have no say in who ,gets it if you are not married,We looked into it one time.
In this country you are not considered next of kin to claim a body if your not married,also a will is not enough and the new power of attorney,is so complicated.my daughters would not have liked it if we did not tell them.Slim has been there dad for a very long time,6 8 and 13 years old.
We should have married years ago,I suppose its the old story once bitten twice shy,seems so silly now.
On a good note,do not do retail therapy so I save some money,and we will have a big party when Slim is in remission,it will take sometime to organise as very large family all over the country,another goal to look forward too.
Thank you all for your best wishes
As perkymite might would say on ward and up wards:-D 🙂 😛
Thank you ladies
It has been along time coming 3 engagement rings,in 30years the things we do for a diamond lol.
I have always felt married,so it has never bothered either of us.It is the easy way to get everthing in some order.Two of my daughters can make it the other one is in nz,and my step daughter cannot take time off teaching.
The party will have to wait,thank you for your kind thoughts
Hi Tony
Wish I could be of some help but your are in front on this journey,the help line can most help you here its worth a call,she can also put you in touch with some one who has had the same treatment.
My partner is on MX1 trial he has the ctd side,what the trial offers is if ctd has little effect it is next round of drugs not on nhs list.I felt we had no option because his mm is advanced.MX1 trial is for people who have no chemo in other words fresh blood,we had decide very quickly,as he was very ill at the time with hypercalciumier and akf.
Let us know how you get on as it helps people who are behind you on this journey best wishes eve
hi Mark
Hang in there Mark,Is it a tumour on the skull or lesions? try to be positive,It is hard,and no matter what anyone says you and your family are the ones going through this,Wish you well mark
Hi Bridget and Min
Thanks for confirming it,s not me going mad ,just tired.At the stage Slim ,s going hot and cold both awake all night then hospital for consultant.He had not been given zometa into 6 week of treatment,told tuesday when taking blood,no zometa,told thursday phoned lunch time to make sure not forgotten phoned back come in 1 hour earlier at 3.30 instead of 4.zometa given at 4 oclock,still waiting for chemo drugs near 6 oclock,Not the nurses fault but the pharmacists needs a kick up the backside.This drug waiting has happened 3 times .No one can tell me after taking blood they have 48 hours to get drugs ready if they cannot do it take blood 3 days before not 2.!!!!
Today I am not going to moan!!!It is such a lovely day,going out for a walk,we live by the sea,Slim in long johns plus heavy trouses on the grounds its easier to strip off if he is hot,I am getting some summer gear out.hope you can all enjoy this lovely weather.eve
Jet
having hyercalcaemia is bad and with the akf,Once you were put on drip with in 24 hours you would have seen a good improvement,drinking lots of water to flush kidneys out helps skin.Water seems the key to having good effect on skin and hair flushing excess drugs out of kidneys is important.The bone infusion helps with the pain relief.there is a piece on this web about it.Dex is positive in that it does help fight cancer and gives you energy its the coming off dex that gives you the lowers,I would agree with Kay.
It is just nice to have my partner a little bit normal for a few days on dex,even if he has his dex moments!!![trying to do to much]I have so many holes in my tongue ,biting it LOL,I find it difficult to walk away and think its a dex moment!! eve
Hi Mike
sorry you are joining this club,but you will find it an experience in it self. lots to look at and lots of info here takes sometime to take it in.
My partner is coming up to 3cycle of chemo 21days of ctd myeloma x1 trial.
This site has helped me a lot,some great people on here,have a good journey
Hi Jet and Bridget
I do not think gender is the key,My partner on ctd takes 20 tablets 2mg dose 4 days running then repeats dose after 7 days.his chemo cycle is 21 days!!!!
has a good quality of life when on dex although a bit short tempered,takes a few days off dex and is very very tired,hot and cold,not wanting to eat.
The strange thing I find is no weight gain or looking puffy,He lost over 3stone very much your story jet,no extra weight gain with dex.
the only thing he has taken a dislike to is red wine,and he now enjoys sweet things!!!
The strange thing is if you look at mx1 trial people we might be split into 2 groups ctd and crd but people seem to be on different doses so how can they compare.I believe your own consultent decides the actual dose.Has anybody else noticed this.
Hi bluebird
my sympathy to all your family,My partner has mm,and it is hard to deal with,IT is rare only 3000 cases a year in Britain most doctors will only come across it once or twice in there working lives.the symptoms can be many illnesses,only bone marrow test will confirm 100% that it is mm.
Most people put it down to back problems,age related illnesses,I could go on with many more general problems.You will get over the anger,it is part of the grieving process,no one wants to loose someone they love.So take time to grieve for your brother.
