This topic contains 23 replies, has 16 voices, and was last updated by 
Min 11 years, 8 months ago.
Stephen and I have been to the edge on one or more occasion, but this is the worst that he has ever been.
He can no longer walk without crutches, has lost the mobility down his right side, his vision has gone in his right eye and he sees double out of his left eye.
He looks like somebody that has had a stroke and lost the right side of their body.
Since we have had to give up work we have always gone "out to lunch" once a week not posh just anywhere that feeds you for 6 or 7 pounds chinese, carvery etc. (the local chinese buffet is wonderful and all for 6.99) I still try to encourage him to do that but only if I know that we can choose where to sit.
He now has trouble feeding himself and where as I don't give a **** about dribbled food I will hold on to his dignity, for his sake, forever. So I find a little corner where nobody else can watch him eat
I hate motorway driving but we have been up and down to Maidstone hospital (M20 M25) for 10 days for Stephen to have radiotherapy. Not to cure but to try and ease the pain. Our Wizard of Oz has already told us that it will feel worse before better. It was the same last time but I could scream to see Stephen in so much pain.
He has always been a very tactile person but cannot stand to be touched because it hurts. Our younger dog adores being near a human. A paw or a bum just touching one of her peeps (people). She jumps up on Stehen and he screams. She jumps off and looks scared and then Stephen feels guilty for frightening her.
Stephen's mm is so agressive There seems to be another lump every day. The strange thing is that apart from the first couple of blood tests he ever had it never shows up in his blood It shows as "bony damage"
On a lighter note I am posting this from our PC (how old fashioned are personal computers becoming) In our smallest room
It started out as a bedroom. 2 kids 3 bedroom house but it turned into an office when the children left home and Stephen started working for himself (self employed I used to work out the VAT tax etc in this room)
As a "time served" carpenter he even built me some wooden desk areas around three of the walls. But the walls of this room are adorned and smothered with photos of the kids ( and a couple of us as well ) Our grandchildren are in their teens but here in this space they are under 3 and the photos of us are before mm.
Nice memories
Dear Gill
I am so sorry to read your post. You both have been in my thoughts and prayers. Stephen is having a terrible time and it must be so difficult for to watch him in so much pain. I hope that the Wizards magic kicks in soon and Stephen gets relieved of his pain soon. I am not good with words Gill, but please know that you both are in my thoughts. Your lunches sound good. I hope that you have many more. We are off to see consultant.
Take care of yoursel Gill
Love Jean xx
Hi Gill,
Don't really look on this post too much but every now and then and I've just seen your post! I am sorry to hear Stephens not doing too well and I hope this treatment will soon kick in and start to relieve his pain.
Always thinking of you both much love
Liz & kev xx
My heart goes out to you Gill. Fix your mind on the good times.
Kindest regards ? vasbyte
David
Hi Gill and Stephen
You know i am so sorry to hear that Stephen is still having problems,I hope the Top man can work some magic and cure the pain that Stephen is suffering.
I love the way you go out and eat at a "Not Posh" one £7 is a lot of money these days Lol and am pleased you can still get out.
I bet you love that Wee room where you can sink into the past I also have one like that.
Sending you Both Love and Hugs to you BothTell Stephen to stay strong.
Love and Hugs
Tom "Onwards and Upwards" xxxxx
Hi Gill & Stephen
So sorry to hear about Stephens on going problems,just to say that I am sending lots of positive thoughts to the both of you.Take care with all the driving Gill.
love PaulX
Dear Gill,
Iam so sorry that you and Stephen are having such a difficult time. You have always been such a source of positivity and strength and you have helped so many people here on the forum. I am thinking of you both and hoping for some relief for Stephen which I know will also bring you some relief as well,
Stay positive, stay strong,
Much love Mari xxx
Dear Gill,
I have not posted before as I did not know what to say. I am hoping that the Wizard has managed to control Stephen's pain and he is comfortable at least. It is good that you were are able to give up work and spend time looking after him, preserving his dignity and generally being together which I am positive he appreciates more than you know.
I have been thinking about you both and send love and big hugs.
Love
Tina X
Dear Gill,I am so sorry to read that things have gone this way for Stephen and you to cope with.
I am thinking of you and your family and sending all the good cyberthoughts I can your way.
Love
Eliz
XX
X
Dear Gill
Like everyone else I am sending good wishes and prayers for you and Stephen. I am so sorry you are having such a difficult and distressing time. I do pray that you find some solution soon. Bless you for your courage.
Lots of love to you both.
Mavis x
Hi Gill and Stephen
Hows things this week end I hope you have both enjoyed it as best you both can 😀
Hope things have been good I just thought i would look in and see how you both are, thinking about you both
Love and Hugs
Tom "Onwards and Upwards" xx
Hi Gill & Stephen,
I truly hope that the medics do their utmost to alleviate Stephen's discomforts and pain and that the radiotherapy stops the current problems in their tracks. I realise how far Stephen has deteriorated in the past few months but I do hope they can bring some balance and control into his life.:-|
My thoughts are with you both, I do think of you often with regard and best wishes.:-)
Dai.
We are now on the "home run". Stephen's oncologist was shocked at how quickly Stephen has deteriorated. Long consultation tonight meant that Stephen quietly put his foot down with a firm hand (just one of our family's silly sayings)
He had been offered E-hap/Dee hap (I am sure I have spelt them wrongly and/or a very high dose of Bendomustine. We looked at the Macmillan line (the only place apart from this site that I would look at for an expanation of drugs, treatment etc) so we had some idea of what was on offer. After seeing the oncologist Stephen was seen by the Wizard of radiotherapy (the famous wizard of oz (australian trained)
Seperate consultation altogether. To cut a long and sad story short If he has intensive radiotherapy to improve his mobility he will not be able to take the intensive chemotherapy that will extend his life. Maybe not extend it for long but extend his life.
He (obviously) has opted for the mobility I (obviously) would have his life extended but I have and always will back his decision to the hilt.
We have an understanding of each other's feelings. I would see him sit in a corner look after him and feed him pap. He would rather not be here than face that, but we had a long conversation this evening and he admitted that roles reversed he would far rather be feeding me pap than be without me
It looks as though we are looking at a very short period of time now.
He may still have another round of Bendomustine but not the high dose that the oncologlist would have chosen. With radiotherapy beeing given in such high amounts a high dose of bendomustine would woipe out the little bone marrow that Stephen has left and his body won't make any more.
Bless both doctors. The oncologist phoned when we got home to say that they had got together phoned other colleagues and had decided to make sure that Stephen's mobility is the highest priority as that is what Stephen wants.
Needless to say I want to shake them all and srceam "just keep him alive" but that is my selfishness and I know not the right thing to ask or wish for.
Because Stephen is (or was) a muscular largish man they hit him with a great deal of chemo etc when he was first treated but his mm is so agresive that it just keeps striking back.
He still is quite muscular and the doctors were particular to get his height and weight measured to judge how much more of these toxic drugs his body could take.
I have a feeling that Stephen is fast approaching the stage wher he will refuse further treatment. I will respect his wishes if he does but will strangle him:-)
I am sooo sory for this waffle and I have no intention of re-reading it to check if I have made spelling mistakes or typos. I just needed to cry the night away and explain my feelings
Love to all and thanks to those who battle through my waffle.
Gill xxx
My Dear Gill & Stephen,
May God bless you both with the strength to see this through to the end. Whether it is mobility or a little more time I hope that it is enough to say goodbyes and to let go with grace.
All us MM'ers know that our time is finite, that we will be claimed and moved on. Some, like Stephen, will just run out of options due to the aggression of MM, others, like Bridget, will succumb to infection due to a weak or non-existent immune system. I am just glad that Stephen is making his choices, while he can.
This may sound cruel Gill and it is not my aim but my main concern now is for you. It is you who will see things through to the end and you who will have to pick up the pieces afterwards. Stephen may decide to quietly slip away or he might rage and grab hold of every minute available to him… it sounds like he knows what he is doing, I believe I know what he wants… but it is you who has always written here… it is you who has become our friend, it is through you that we have felt every triumph and small disaster of Stephen's journey.
I wish you both all the strength and love enough that you may need at this time… and my small thoughts and gratitude for being my guiding lights from the start of my MM journey.
Dai.
Dear Gill
What can I say,drinking champagne last night,with are good news,that no Myeloma cells have been found in Slims bone marrow,and reading your news on Stephen,we are not so many worlds apart,I know you are my future,which I intend to leave behind as long as possible,and Min is your future,a year down the line.So this is are Myeloma World with all its highs and lows,anger and frustration.So we understand more than anyone how you feel,so my heart goes out to you and Stephen.
Do what ever you must do,and take some comfort in your love for one another,and the good times you have had together,and come on here and get your anger out of your system,you have to prepare yourself,to be able to cope with your future,Love Eve
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