[GillParticipant]

I was not sure what heading to put this under. Goodness me I suppose we all live in denial of some sort.

Anyway Stephen has lost a great deal of his sight. What he has left is in double vision. (at least he has stopped moaning at my driving:-) as he is unable to see as a passenger.

This rotten disease has spread very rapidly and it is now in his skull. The pressure of the lesions in his skull are pressing on his brain, resulting in poor vision, balance, short temper (that is not Stephen) and he is sleeping a great deal of the time.

His oncologist told us that he was discussed at their weekly meeting (14 specialists wondering what is the best way forward for Stephen how's that for people trying to help?)

Crazy thing is that mm is almost undetectable in his blood. His pp levels are always low. They only presented at his first diagnosis. He has "bony damage" which sounds the lesser of 2 evils but gallops on to compromise organs.

We are so lucky that at the very first sign of something untoward Stephen is seen within 24 hours. I know he is being overlooked by a very knowledgable team but the outcome looks grim.

I am devestated but trying very hard to not let it show.

Sorry to be doom and gloom

Love from Gill xx

[eveParticipant]

Dear Gill

What can I say???

Reading between the lines I have been waiting for you to post,as you say in denial,but it keeps you going,if it did not everyone would give up at the beginning,and at the end of the day Stephen and you are fighters,but some times enough is enough,it's being able to see it and accept it.

What matters now is Stephens comfort and being free from pain,I find when Slim is being a pain in the a——— it is usually because he is in pain,I would speak to the palliative team doctor she is very nice and she deals with pain management at Kings,ring up and get an appointment,she can help in so many ways.You need you memories of him to be pleasant and people forget not ever one has that.

If I could give you a hug I would,some times life is so unfair,and this is one of them.

Slims myeloma is the same blood results and urine show ok,but BMB have always shown how it is found in bones,he has BMB next week.
We will be up in Kings for the Wednesday afternoon clinic let me know if you are about!!!

Gill I do not know if you have those magic White pills from the doctor for yourself,but they do help to keep your emotions in check:-P ,

I wish you well on this new journey,my love and thoughts are with you. Love Eve

[tomParticipant]

Hey Gill

Denial is Ok but am pleased the 14 specialist are not in denial and are on it, but what did they say??
As for the temper thing I also am like Stephen I genually dont have one BUT have told The Young Bride (Elaine) that as and if it comes to me losing the plot so to speak I certanly dont mean what I say.

I also cant give you that hug that am sure you want and need but I am sending you and Stephen a "Cyber" Hug ((((hugs))) and I hope it helps.

Lots of Love and Those Cyber hugs sent to you both.

Love Tom xxxx

[MinParticipant]

Dear Gill,
Your in my thoughts and I know you will find the strength to take you through
Whatever life has to throw at you. Pm me if you feel up to it.
Min x

[jmsmythParticipant]

Dear Gill

I can only say again what the others have said (but not as well). I just wanted you to know that you and Stephen are in my thoughts and prayers. I send you love and hugs as well and please know that you have lots of friends here that have you in their hearts

Love Jean x

[TinaParticipant]

Dear Gill,

I am so very sorry to hear of your news, I know what a very difficult time this must be for you both. Following your posts for so long now I know that you will be strong and will cope with everything to come. Stephen's journey may be nearing the end but it's not here yet – so enjoy each others company each day even Stephen's short temper!

My very best wishes to you both

Tina XX

[DebsParticipant]

Dear Gill,

I am really sorry that you are reaching this difficult time for you and Stephen. Like Tina has said, I hope that you are able to make the most of every minute with him (and that the short temper isn't too horrendous).

Thinking of you
Debs xx

[HelenParticipant]

Dear Gill
This must be so hard for you to bear, but as already said, use this precious time as much as you can, we are thinking of you.
Love Helen

[GillParticipant]

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

[jmsmythParticipant]

Dear Gill

You have nothing to apologise for, that's what the forum is for. I know if I didn't rant I would go mad. I hope the 'wizard' can work some magic and help ease Stephen's pain. I know it's hard to watch someone you love in pain but I hope Gill that things get easier for Stephen and that you can take things a bit easier. My thoughts are with you both.

Take care
Jean x

[eveParticipant]

Dear Gill

You know we are all thinking of you in this bad time,so have a go all you like we do understand,you are in a position were no one wants to be in,and we all just feel for you Gill.

I hope the radotherapist can easy Stephens pain,I cannot imagin how you are coping with that,they can do wonders these days,they have machines that can pin point small areas .
I hope you have lots of support from family and are getting some help from outside as you will be exhausted,I wish there was more we could do,apart from offering sympathy,but there is not,Love Eve

It's lovely to hear your consultant is going that extra mile for Stephen.

[DaiCroParticipant]

Hi Gill,

I am so, so sorry that Stephen is having such a rough time with these brain lesions. I have my fingers crossed that the 'Wizard' can pinpoint the main culprits, easing Stephen's pain and hopefully alleviating his double vision.

Are they offering any treatments or maintenance? Has your consultant actually said that Stephen has entered the end of life procedures? If so are you considering Hospice care or do you intend for Stephen to stay at home?

I hope that there is at least one more shot at treatment available… it sounds as if your care team are examining all the options and your consultant sounds like a star.

My thoughts are with you both… as they have so often been.

Regards and much love:-)

Dai.

[tomParticipant]

Hi Gill and Stephen

Your man sounds like my man never seems to have a day off ? I know when I was at the start of mine he phoned me way past 8pm and gave me advice and came back to hospitla to take my femoral line out so I could go home.

I hope between him and the wizard soon sorts out the pain, you know we all have fingers crossed and prayers being said for you both.

Love and loads of Cyber Hugs

Tom (((((HUGS)))) xxxx

[PerkymiteParticipant]

Dear, Dear Gill, I missed your original post, I have been very busy the last month and I only pop in and out on the forum at the moment. The rest of the gang have said everything better than I could say it is great to see them rally to your support, support you richly deserve.

I wish you and Stephen the very best and I sincerely hope the radiotherapy works. I will be thinking of you and Stephen and I just hope we can all help you now.

Kindest regards Gill – VASBYTE.

David

[GillParticipant]

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

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