This topic contains 11 replies, has 6 voices, and was last updated by 
tom 13 years, 3 months ago.
Hi everyone hope you are all enjoying the weekend Well I had my clinic appointment and ct scan last week , no results from ct yet though The next treatment has to be discussed in the MDT meeting which wont be until a week on Monday due to the bank holiday , my doctor was disappointed when he realised there would be a delay but couldnt do anything about it Apparently the tumour will be difficult to deal with due to the fact that it it starts in my spine and continues up to my ribs on the right, it is an exact copy of my original tumour on diagnosis whereas the the last two times I relapsed the tumour was just in my lower spine They are fairly confident that the lovely Prof Tobias will work his magic with radiothereapy though However I will need systemic treatment as well and as he put it I have had two major treatments so anything they give me now will be less effective than they were The two options considered so far are Bendamustine or a heavy duty chemo similiar to ESHAP , so the hair will go for the fourth time but I am not worried about that . I would have to be an in- patient and it doesdnt sound too pleasant , though not as tough as Melphalan. I will be very glad when radiotherapy starts as the pain in my back is constant now and hard to manage The hospice would like me to be an in-patient to find the best pain relief but I have told them there is little point till after RT as the pain should lessen or go , hopefully . I did come away feeling down as the doctor also said its time to start thinking about what I want as far as treatmentending or not , he was a bit vague but I got the message Still as my lovely hubby said who knows what the MDT meeting will throw up when they get their heads together So onwards and upwards to the next stage witha big smile and teeth gritted haha love to all you lovely people Bridget x
Hi Bridget
I have to say it Bridget your a brave lady,very brave,were an earth do you find all this strength,and courage.It,s not just the illness it is the courage,as you go through each treatment,you manage to find a smile and help other people on this site,all though you are in a great deal of pain yourself.
In you own way you are a fighter,and staying positive will get your through all this,best face on and forward, Love Eve:-)
ps forgot to tell you i live in a mad house as well.keeps you busy.
Hi Bridget
Well you are a chirpy young lady third:-D time your hair will be going on Holiday8-) and you throw me a smile 😀 and your Hubby is correct, its a wait and see and you do it in the most wonderful way.
Love and Hugs
Tom "Onwards and Upwards" xxxx
Hi Bridget
So sorry your having so much pain – hate to think of you putting up with it if there is something the Hospice could offer above what you already have might it be worth a short stay? Would it mean going in for very long to see if they could help? I know how you feel – I wouldn´t want to be away from home either but perhaps if it´s 48 hours or so could you put up with it until treatment options become clearer?
Anyway, you know what´s best for you – spoil yourself as best you can. Whatever works for you is the best way.
Prayers and very best wishes
love Carol xxxxx
Hi Bridget
Good luck with your radiotherapy. Stephen can't wait for his hit as he is hoping, like you, that it will be like last time and ease the pain.
I would not dream of giving advice to what treatment you should choose, but I have read that Bendomustine is the new lifeline for mm. They have used it a great deal in the States and before Stephen's oncologist realised that Stephen had enough stored stem cells for a second transplant he said he would try to get him on a Bendomustine trial as that is the only way in our area that it can be funded and Dr S thought it a great way forward.
As for staying in for a few days. Before I had even looked on here I spoke to Stephen regarding what I called his silly reluctance to go in when his Hickman line was infected. He told me that, for him, facing a shortened life, any day away from his home, his garden, playing with the dogs, sitting on his sofa, sleeping in his bed etc. was a waste of a day.
Dearest Bridget You know that we are all rooting for you xxx
PS I have just put my hand in my dressing gown pocket for a tissue and come across one of Stephen's socks, rescued from the clutches of our older dog who gets into the dirty wash basket and steals Stephens socks she dosen't chew them but sucks them to death. Obviously it wasn't much good for my tears and sniffles but at least it made me smile:-) Hope you do too
PPS His feet aren't smelly and she does exactly the same if she can get hold of his clean socks
HiGill thanks for making me smile this morning , the image of you pulling that sock out was funny I have been thinking about how reluctant we are to go in to hospital and I agree with Stephen , time at home is precious and the thought of hospital food , beds etc is not a happy one I t was the hospice that wanted me to come in to look at my pain relief and my reluctance is a bit different there Its more a physchological thing , I do know hospices offer far more than end of life care but I dont feel ready to spend time in there yet, a little bit of superstition as well . Well heres hoping Stephen and I dont wait too long for radiotherapy .As for the rest of my treatment I trust the team at UCH to come up with the best option for me so its a case of waiting to hear from them Take care Gill love Bridget x
Hi Bridget
I can see were you are coming from,and I can understand you superstitions, do not worry you will know when the time is right for you.
It has taken you a few days to tell us,and I do not understand why you posted in this part of the site.
You are worth alot more than this,if you had posted on treatment people would know,what is happening with you,and be there to support you.
Take it one step at a time,you are a strong person,.
When Slim was in hospital a doctor was talking to me about palliative care,and he has just helped me spell that word:-)So be positive,your attitude of mind will take you along way.listen to your heart. Eve
Dear Bridget,
Im so sorry to hear this news. But I know you have a wonderful team looking after you and they will do everything in there power to keep you well.
If they are suggesting a few days in hospice to sort our your meds for pain it cant be so bad. My friend went in for just 3days and they sorted her out quite quickly as they are on site and can see how you react to each drug quickly.
Once they get it right you will be home again.
Its just a short cut to get the pain under control, and that is what you need most.
No good suffering in silence if it was a temperature you would be seeking help as soon as. Pain is just another form of problem that needs adressing but needs it to be effective so you can get on with your life.
Superstition well OK Im the 1st to admit I am the worst ….my most rediculous one being the colour green. Im terrified of it. Being in my house unless its a plant.
Good Luck with what ever you decide, but remember you poor man must be feeing for you suffering while he cant do anything to make it better.
Hope something happens soon to make you feel better
Love Min
Hi Eve the reason it took a few days to post my news, actually there were a couple. the main one being I didnt want to add any more gloom when we are all still reeling from losing Gordon and Gaye But I do believe this site is a place where you can share both good and bad news, sometimes being able to voice your darkest fears puts it all into perspective. It is not always possible to share those fears with people closest to me , my husband does not want the burden , my children need to get on with their lives without propping me up and my poor mum cannot accept the fact that myeloma is incurable and talks of when I am well Those are the reasons I value the support from my special cyber friends who understand completely and also give me an insight into how it feels to be a partner or son or daughter dealing with myeloma Having said that nothing is better than hearing someon elses good news so there is room for it all What gets me through the times when I have to hear unpleasant truths is facing it head on for a few days , sometimes being down but after that I put it to one side and just get on with what needs to be done The reason it was in this topic is nothing less than chemo brain Haha and not looking before I posted good job I am a bit more careful when driving !!! So heres to keeping on with the battle , for all of us ! love Bridget x
Dear Bridget, and the rest of you all
Let's get this straight. In my view (and I can be very self opinionated!) this site has many facets, and uses. It is full of information, it puts us all in contact whether mm people or their husbands, wives, children, parents, friends, secret lovers?? (that would be fun:-) with others that this wretched illness affects
I have always felt guilty if I had good news somebody else feels guilty if they have bad news.
MM is very individual some people have good news some people bad news. Let's stop hiding whatever news it is from each other. I have posted on here when I am in floods of tears and will not go to bed for fear that Stephen will hear me sobbing and worry about my worries.
On here I feel that others that post do not have to pick up my burden but many choose to give me a hug and a pat on the back sometimes and thank you all for that.
For those of us of an age we could make a slapstick comedy film called "Carry On Posting"
Love to all Gill xxx
PS I am tempted to delete this post as I think my pig headed self opinionated stubborness shines through every word and I wanted everybody to think I was soft and cuddly, still weighed 8 stone and looked like a film star. No all you clever clogs out there not ET xxx
Good morning Gill well the image of you on a soap box certainly started my day wuth a smile !! Absolutely nothing wrong with having strong opinions so keep on telling us like is please Gill Not sure about Carry on Posting though the only character I could play was the Bernard Breslaw one , very large and dim!! Haha hope you and Stephen have a good day love Bridget x
Hi Bridget
Dont be afraid to post your problems yes we have had some sad news of late, but we also have had good news. that is what I think this site is for to post your cussings and post your smile's (shame the former wont post though he he)
And Gill am I pleased you didn't delete your post 😀 and up for the film but not sure what part I could do?? Over to you lot ha ha
Love and best to you all xx
Tom "Onwards and Upwards" xx
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