Dearest Dai
Ihave just re-read your post regarding the Quakers It sounds lovely Maybe not for me just now but a great possibility in the Future.
Thank you for sharing it.
Best love Gill xx
Dear GAil and Sue
I am sorry I have not noticed your posts. I have been so consumed with Stephen's turn for the worst and death that I have not really been with it at all.
I do hope you are both coping and managing yo come to terms with the loss.
Kind regards Gill
Hi Jennifer
I am sorry you have not had more answers to your post I think it maybe because you have asked questions that us laymen cannot answer. I am sure that the specialist team will be able to help you regarding all your questions and you will certainly get support from the motly crew (me included) that post on here.
Kind regards Gill
Thank you all so much for your kind thoughts and wishes
We are changing [b]nothing[/b]! We are ignorinig the fact that Stephen cannot get out of a chair without crutches and me heaving him up and almost falling over (we laugh! What a pair we have become)
We are trying the best we can to keep life as it was and is and will be for as long as we can muster it.
We stil [b]ROW[/b]!!! mundane trivial stuff.
We both know it must change and yes we have talked. Thank you for that reminder Min and I am so sorry that you are now facing that first 12 month date
Our rows are so silly but probably quite "normal" Stephen used to feed the dogs (2 naughty little westies)
I always said that he gave them too much food and they were getting over weight. He cannot feed them now because he is so disabled so I feed them
They are not going hungry and looking a lot trimmer. AHA I say "see you were so wrong" he says "but they were much happier and they love me more" he never admits to the little "yummies" (treats) he gives them when I'm not looking
We never shout or get very angry (never did)but we have heated discussions as usual. We still row about political decisions that have been made by the government etc, Neither of us have ever understood how 2 people with such opposite views could be so happy together but we always have been.
When Stephen was first diagnosed we were both told that mm is terminal. "We cannot cure you but we can treat you and we will treat your pain first." Well Stephen's team have come up trumps every time. I cannot say that he has never had pain but they have managed to control it to a level that is OK to him although his pain seems to be beating the medication now.
I just hope that they manage to get his pain medication right.
Thanks again for all your good wishes Gillxx
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
Hi David
I have not logged on here much lately as Stephen is so poorly and needing a lot of care.
I am so sorry to hear your news.
What a bitch this life can be.
Love and kind thoughts to you Gillxxx
I know my spelling will not be good but sore mouth = corsodyl tooth paste and mouthwash
2 Stem cell transplants and Stephen got one very small mouth ulcer. Helped by Rinstead pastilles.
The old remedies are sometimest the best.
Good luck and good health to all Gill xx
Stephen has had mm since 2008 he was diagnosed at 53 Recently he had symtptoms of brain cancer and his team looked and looked again (I love the team that work on his behalf)
What they have found are 2 little blighters in the base of his skull. Not good but nott quite as bad as in the brain
Now your mum has been diagnosed she will get the best treatment possible for mm
Good luck Gill
So pleased that your mum is feeling better.
So lovely to hear that some are doing well
Kind regards Gillxxx
Dear Lynne
Sorry and Thank You
I am so sorry that John has gone but thank you so much for your advice. Stephen is on Dex at the moment and can be horrid. Sometimes I bite and sometimes I walk away.
What is hard is that he has always been a laid back pussy cat and now can be a growly cat.
We all need to treat every day as special. Any one of us could be gone tomorrow mm or not —–heart attack, hit by a bus, fall down the stairs—who knows.
Keep in touch if you can bare too
Love and thanks from Gill xxxx
Love the quote Dai thank you
Thanks Jean
You should see the pair of us trying to get out of the flippin jag what with Stephen's mm and me just beng too old for such frippary it is like trying to get up off the floor in public and keep a bit of dignity:-D
Hi Everybody
The oncologist looked again and thought it was in the brain (We had a friend who had lung cancer and it went to her brain It was aweful but quick so Stephen's prognosis looked even worse). They scanned Stephen again MRI, PET anything else that gave a chance of having another look.
All hail the wizard of oz. We went to see him and he has said that it is NOT in the brain. It is 2 small lesions on the base of the skull and although small are resting on a nerve which is causing pressure on the brain. Zapping has commenced and the wizard said that although he cannot guarantee Stephen being right back to how he was before these 2 lesions he can improve on it no end.
He also said that he was surprised when it looked as though they were in the brain as it would not have been a secondary but another cancer on top of the mm and how unlucky would that be. Secondary cancer with mm presents as plasmocytomas (sp)
Fingers crossed the end is not as near as first thought. Stephen is hoping he will be able to drive again for at least a while. He bought himself a 24 year old jag just before this happened and has only driven it a couple of times.
I treated him to new number plates and in tiny letters under the numbers it reads "mid life crisis":-)
Thanks again for all your kind posts I do hope everyone is OK I haven't had much time to read the posts on here with all the hospital visits but will catch up with you all as soon as I can
Love from Gill xx
PS He realy is the wizard of oz as although from Italy originally he trained in Australia
Your lovely posts have made me cry in the nicest way. Thank you
Stephen is enjoying the olymics and sleeping through most of it 🙂
His specialist phoned this morning (11 am on a Sunday how dedicated is that man) to say he had spoken to the radiotherapathy wizard last night and they think between them they can ease Stephen's pain.
That is great news but I WANT A BLOODY CURE
He did so well mid way but is going down hill fast now.
Sorry to be such a doomy poster
Love to you all Gill xxx
I am not here much at the moment and did not know how near the end it was I am so sorry to hear of your loss
Gillxx
