Hi Kaye
I am so sorry for your families loss and for the way the Myeloma progressed without being spotted,I personally think people should learn all they can,and not have this blind faith in doctors,at the end of the day,they are just trained people,and family should ask questions,even if it’s only for your peace of mind.
When people are mourning a loved one,they go through all the motions of,angry grieve,memories ,and the fact of not being the way your mum would have wished ,it is hard also on the proffectionals as every individual patient is different,some ask questions and some leave it to the medical teams,
Your mum is at rest,and you as a family have to find your own closure and learn from this,you only have one chance of getting a death right,so it is important to talk to love ones about choices,it’s just unfortunate we have become a society were death does not fit in to normal life,but if you think about it death is normal and it should be open to discussion .
Kaye the one thing you can learn from this,is talk as a family.
It is early days for all of you,and you do have to take it one day at a time,some times even an hour at a time,do not go beating yourself up,about your mums death,it will not achieve anything and I am sure your mum would not want that,ask questions by all means,try not to feel angry as it achieves nothing,learn from this,death is a part of living.
People tell me how well I am coping,and how strong I am,in truth,it’s far from the truth,I get up most days and just function to how I feel that day just to get through the day,and I had no angry about the way my husband died and felt I gave him the death he wanted,it was just his time.
Make your memories of your mum and keep them close to your heart,you will find yourself talking to your mum,it’s natures way of healing the pain of them not being there.Eve
Occupations have been talked about concerning Myeloma,
If you think about it chemicals exist in basic materials for every day use,for example wrapping on food,which is put into a microwave !!,
Jobs that you have done in your life ,Farmers service Men,anyone who came into contact with Chemicals,I think why there is no direct research into this is they already know that chemicals have Cancer links,and the main research is trying to discover how it effects one persons DNA but not another person.
When people are on trials the data collected is used in research and over the past few years they have uncovered lots of information from BMB,I do not think it will be long before future generations of Myeloma people will be treated individually based on there DNA, let’s hope this will be the way forward and all the people that have been on trials and died,have helped this come about.Eve
Hi Jan
How are things,!!! I do not post so much now but look in to see how everyone is doing,and looking at your post I thought you needed some surpport at this stage you are at!!!!
The doctors are telling you to prepare yourselfs, and it’s not a bad way to go,because if this does happen at least it will not be such a shock as last time,and knowing this you can talk about all the things we seem to leave unsaid,even if you both get upset,it will hold you in good stead for the future.
Take every day as it comes and enjoy it!!
My mantra was always,why worry about tomorrow and spoil today,it helped us for many years,although we were not able to continue are marvellous life of travelling which we loved.
Towards the end we were lucky to have so much time to talk and say what we felt,and like most people on here we just wanted time.
My best wishers go to you,and I hope you have a lot of time together. Eve
Hello Everyone,well it’s 6am,and today I am coming to the end of a journey!
Last day to make sure every thing goes right,visited Slim yesterday,and took masses of Sunflowers to line his coffin,if you have followed this journey you will know how much we enjoyed France and the fields of sunflowers,they represent a big part of our lives together,all ways looking for the sun.
No regrets lot of love fun and laughter along the way even enjoyed his grumpiness made me laugh,I am watching the sun rise over Deal,the sky is red,so may be it’s not going to be a hot day,: red sky at Dawn sailers be warned : or may be they just know Slims coming lol.
Thank you all again.
Helen W ,enjoy every minute.
David, keep looking behind you!!! Someone trying ti kill you!
Helen R. I know your journey well we use to stay by the church wall in El Burgos and drive about 15k to a place,were there are lots of golden eagles and Griffin vultures,that fancied Oscar for breakfast,and walk through the canyon ,there is a little church there plus,a cave full of Bats,i hope you at least get there but the walk is hard,it’s become a bit touristy now!!! ,I cannot remember the name of it,but I am sure you will know it.
Time to walk the dog,it’s going to be a long day,I hope I do Slim proud,before I start my own journey alone.
My love to you all,you have been an immense support to me,the Myeloma Bubble has burst for me,good job I am a good swimmer. Love Eve
Hi Gill
Reading your posting,you could have been talking about Slim, Stephen and Slim must have come out of the same mould. Lol
One of the people from the past described Slim as a gently giant,that was her memory as a little girl.
I had to stop and think about the way she saw him. The last four years took there toll as he fought to stay alive, he lost 5 inches in height ,he was never a heavy weight,but when he died I would say he weighed about 45 k, So I agree it is a bastard of a disease,and to go through it,and live with it as we did,takes guts. I would not have missed one minute of those years,it makes you appreciate life in all it’s fullness.
I also try to be positive and think there are people far worst off than us,we had such a good life and did so much,just would have liked more years,but that applies to everyone on this site.
Slim is also having a Celebrant ,who is an Ex Marine,also a little bit of a Marine send off,the flag and the last post,but he is going out to Queens ,who wants to live for ever.
Dr Hook and Rod Stuart ,will be in there some were,so it’s not going to be very conventional at all,but Slim was not either.
I decided his service was going to be all about the man he was,and not the man he became as he became nearer death,so I hope Gill you raise a glass on the 9th of September to Slim and Stephen and think we were lucky to have loved such stubborn stubborn men. Love Eve
Hi Mary
We have lovely nurses on this site Ellen and Maggie,the number is at the top of the page plus it’s free,talk to them,they can send you booklet plus give you lots of information.
When someone is first diagnosed,it’s very hard to take in all the information,I had never heard of Myeloma,try not to go looking on the net until you can have your information clarified by the nurses on hear,they are lovely people who can help you.
Back pain is a symptom of many things,to reply to your question we would need more information. Eve
Thank you all for your condolences
Although expected it still seems so unreal.at the moment I am ok as I have said earlier I have no regrets,it’s a comfort to me that Slim lived and died just the way he wanted to,many people specially in death,do not get the death they wanted,plus many things are left unsaid.
Slim wanted a non religious funeral,so have arranged this,he is being cremated on the 9 of September,as my birthday is on the 12 September.
I want it to be a celebration of his life,I hope I can do him justice. Slim wants his ashes thrown off the end of the pier,just have to make sure the wind is blowing in the right direction.
As for myself I think my weird sense of humour is keeping me going,I am going to leave you with my thoughts.!!
Why worry about tomorrow and spoil today. Love Eve
Hello Martin
With the amount of damage to your back,I would expect you to have been in sever pain and needing medication for it!!!
The consultants must have done a Skelton ex ray plus MRI,scan which show the damage,if it’s pain from that area ,there should be some relief as chemo does the job of removing cells,but if it’s the bones crumbling as the treatment works causing nerve pain,that is different.
Most people take a bone strengthener like Zometa which helps.
You alone know your body,listen to it,ask your consultant or see your doctor,excise in small doses is good for you,helps strengthen muscle around the bones.
You have to learn to be vocal with this disease,but first you have to find out what is causing the pain,lots of people are on very strong pain relief,you have a lot of damage to your spine,which could relate to Myeloma itself or damage caused by Myeloma causing more problems,you need to know which. Eve
Hi Angeline
I have to ask how long is a piece of string!!!instead of thinking how long will it last,think how long you are going to have your Dad.
People choose there own time and own way to die,embrace it and do all you can,it might sound a bit old fashioned ,these days we hide it away,in hospitals homes or hospice,I am not knocking it,it should be the patients choice.
I am in the same position as you,my husband has been on palliative care for seven weeks,people telling me it will not be long!!! I just think you do not know my husbands will to live,and I would not have it any different,it’s not a bother,it’s a wonderful experience,no tears or sadness,lots of help carers in 4 times a day,now have night sitters,district nurse every day,and lots of love and care from me and are daughters,a man could not ask for more care so embrace it.Eve
Hi John
You do not give much info on your dad age treatment and so forth!!!!!
So it’s a bit hard to reply????
I can say when you have Myeloma you just want to get on with treatment,people react different to treatment even to the point of treatment being changed!!
Your dad asking for a month off means he is having problems find out what the treatment is and the problem!! Ring Ellen or Maggie,number at the top of this page and they can help!
No one can reply without more information,this is not a quick process,and I would say some times it’s better to approach things slowly specially if Dad is not going for SCT.
Ellen will be able to give advice and send you booklets to give you more understanding.
I wish your Dad and family a good journey on this roller coaster with all it’s highs and lows. Eve
Dear Helen
What’s ironing lol!!!
Hi Helen
Dog is fine just an old man the vet said,not to feed him on are rich food,but he does like smoked salmon and scrambled egg plus bacon butties.
Legs collapse every now and then,will not leave house when Slim is very ill,would not go out yesterday,but today went to beach be it all 15 minutes.
Gammon steak in a cheese sauce tonight!!!!. Lol.
Thank you,for all your thoughts.
I very seldom leave Slim now,he has to be good before I think of going even to get a paper,today the district nurse came to change his driver and 2 carers came so I popped out with the dog,he knows he has to do a super fast pooh. Lol.
I have agreed to a hospice nurse for tonight!?, coming at 10 pm going at 6am,not even sure I will be able to sleep,Slim wants me in the room,so I am trying this reluctantly ,the DN tells me my body will eventually give in if I carry on,but this is not something that has just started,it’s something we have lived with for years,
He does go from one extreme to another,all I am doing Helen is making sure he gets what he wants and is not making decisions for the wrong reason,my youngest daughter goes away for a week on Sunday,we have told her to go!!!my other daughter has a holiday booked for the end of this month.
I have always had a believe that people pick there own time to die,and Slim still has a strong will to live,I would hate him to feel he is a burden to me. Plus time is just a number of hours,what does it matter night or day,it’s not really important in our world at the moment.
He loves being at home and ruling the roost,TV controls telephone,carers,loves his scrabbled egg with smoke salmon and bacon butties be it small quantities ,he had a bad day yesterday,today he is defying nature has been awake since 05.30 am,and has just decided to have a nap before the night nurse comes in!!!!!I would not change anything Helen. Love Eve
Hi all
As I am on thought I would let you know what is going on in are lives,hope it’s not to frightening but it does not seem like this to me.
Slim is on palliative care,plus we have two carers coming in 4 times a day,plus district nurse to do driver,I have back up medican and I often have to call the district nurses out any time,they work 24 hours a day on call.
We have also had 2 palliative care consultants and doctor come in.they keep me well informed plus I have copies of letters sent to my doctor,and last but not least my wonderful doctor comes in.
Everyone is concerned about the amount of medication Slim is on,but he is having no bad side effects,just different levels of pain that cannot be controlled,if I may explain,it’s not so much Myeloma Pain although I am sure that is apart of it. It is the result of amputation and artery blockage which is advancing,plus open wound,this is what I do not want to scare anyone with!!!!!!?,
At the moment he does not want to go to the hospice,and I have to respect his choice,
We take every day as it comes,no tears or regrets,just enjoying what ever time we have,just made him a bacon butty and a cup of tea. Love Eve
Tom
It’s all that gallivanting and beer drinking lol!!!?
Go for it Tom,make the most of the time ,this is what every one should be doing,a bit of a rest will do you some good. Love Eve.
G&T for me please.
