Hello again.

FormerMember
FormerMember
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Hello folks. So sorry for another absence from the site for reasons along the same lines as   I have been watching from the sidelines though and have had some good laughs and more than a few tears along the way.

I'm sorry to hear about your latest brain CT  and wish you the very best of luck with your treatment. Sounds like you're in groundbreaking territory and you're the right man for the job.

I thought I was doing ok on a reduced dose of chemo, but the blood & urine tests showed an infection which spread to my kidneys. I was really suffering with sciatica and then developed weakness and loss of control of my bladder and legs and ended up being admitted for an emergency spine MRI. The 1st scan showed that the spinal cord itself wasn't being compressed, phew, but flagged up another concern and a second scan.

The second scan shows leptomeningeal carcinomatosis, meaning the cancer has spread to the lining of the brain and spinal cord. It's rare, complicated and the prognosis is 4-6 weeks without treatment, 2-6 months with. The original brain tumour and bone tumours are all growing and the cancer markers have been climbing steadily since November.

Any treatment is to preserve mobility and manage pain but is high risk.

So I'm home on high dose steroids until the MDT meeting next week to see if radiotherapy is an option.There's 1 type of chemo on offer, again if the potential benefits outweigh the risks. It's my call, if I feel I can cope with more cancer treatment they'll try Eribulin providing the steroids keep things stable during the next 2 weeks.

 it was a lovely boost to read your good news, thank you for sharing that, I'm delighted for you.

I've got some catching up to do and hope to have an uneventful couple of weeks to get there! xx

  • Oh well Norberry, if it's a treat to be named by Salis and you need nothing else, I will just give my OH all the baking I've been doing!

    I think there are so many numpties in the NHS who don't read files etc and unfortunately because we have a "Lifetime Membership" here, we are bound to run into some of them.

    Last time I was in hospital, due to dizziness, I was there 6 hours, a nurse told me the head scan was clear, I was so relieved. Then a Registrar came in and said he was keeping me in so they could do various tests and a scan because "I had bumped my head causing a seizure"!!! I told him I had never had a seizure in my life and that I had already had the scan. Then I told him to get the paperwork ready because I was signing myself out! Some of them don't know if they are on their a** or their elbow but no way are they treating me!

    Tinalay, you mentioned about your husband fitting handrails, so do you have stairs at home? I ask because the OT arranged for a stair lift to be fitted for me, or we would have either had to bring the bed downstairs or move house! If you do have stairs please ask!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember in reply to anndanv

    Morning  apparently the Dr concerned offered to apologise but my nurse suggested she stay away. Good call.

    The stairs are a bit of a challenge, but not suitable for a lift, it’s a very old house. We do have a dining room that’s never really used since it’s just been the 2 of us. It has  floor to ceiling windows, & I’ve been planning to take it over as a therapy room, well posh, eh?

    xx

  • What a star you are, congrats for speaking out. I knew you're a star before this Star2

    Tvman xx

    Love life and family.
  • Once you have got the therapy room sorted out Tinalay then please book SiT and myself in for a full service.

    It is obvious to everyone that SiT has, let's just say, lost the plot.

    I think by a bit of osmosis some of his difficulties have jumped, flea like, from SiT to me and need to be exorcised from my pitiful mind..

    And Tvman should have an open invite too due to his suggestion of a Mills and Boon situation between us. He is obviously not getting out enough either.

    I shouldn't put these matters on your shoulders, but you will have a therapy room soon so it is encumbent on you to sort us out? We are your flock are we not?

  • Baking to come firmly in this direction, thank you Annette. My perfect size 10 will not be affected in any way by a large ingestion of rock cakes etc.

  • FormerMember
    FormerMember in reply to Norberry

    absolutely,  my therapy room is our therapy room Blush Will need some input from our menfolk, do we need to establish some parameters do you think? No engines, no balls (foot,cricket, etc) or aim to be as accommodating as possible ? Thinking

    What would be everyone’s one special thing? xx

  • I think you will find us chaps to be the perfect patients Tinalay.

    Alcohol will just oil the wheels of the therapist patient relationship. It shouldn't lead to any worrying behaviour, at least it won't from the male perspective.

    Really, all we would be looking for is our brows to be soothed and kind words said so as to induce a healing environment.

    In order for economy, we would also be happy to share changing facilities, I believe that is the modern way.

    From a selfish point of view, I do love a doughnut, Crispy Cremes if there is a choice..

    I think I have have helped here, any queries, I can't possibly imagine there will be, please come directly to me.

    Thank you for recognising our need, just from a few disjointed posts, incredible.

  • Well, , I sincerely apologise if I have misread the situation regarding you and my Starman , it's only because I have seen the two of you in that little table for two in the dimly lit (I know I'm leaving myself open for a suggestion here) corner of my lounge and I have heard the words "pink roller" mentioned on at least one occasion. Am I reading too much into that? 

    Tvman

    Love life and family.
  • FormerMember
    FormerMember in reply to tvman

    On my part YES YES YES you are reading FAR too much into it!!!

    Norbs, well, who knows??? Maybe the long suffering La Norbette is really a diverting construct for his actual preferences... 

    I'm very much afraid that Pink Roller is NOT for me...

    Chin Up Norbs - Old Compton Street isn't too far away (for you...)

  • Now Tvman, we have all learnt the phrase " he protesteth too much" . I think this applies to our young friend SiT.

    I enjoyed that little lunch a deux,  and who booked the table, oh yes, SiT.

    Who summons me with " Norker, bring the Roller round to the front"?

    I think all conclusions are accurate and self evident.