despair

1 minute read time.

I'm gonna waffle on for a bit

Am new to this, always been the tough one, after reading some of the posts I realised I should have done this sooner, I actually phoned the Samaritans during the night, I was so desperate to talk to someone and of course sob my heart out, I cant talk to friends or family, I have to be strong for them. I just feel so alone.

My Tom (69) has lung cancer, spread through chest wall, and "eaten" 3 ribs, its inoperable, the chemo was unsuccessfull, it nearly killed him, the radiotherapy helped for a while with the pain, but now its a battle to control the pain, I found out yesterday by speaking to GP myself that my Tom has been fudging the truth with him, and is not being very cooperative, so I've got the dosage increased, and I've now taken control of his meds,

I noticed before diagnosis that my Tom's memory, and his character was changing, I could not admit to anyone that he may be suffering with early stage dementia, now with the medication, the signs are so obvious, not only to me but to the family and close friends, I've tried talking to my Tom about it, without much success, he has enough to deal with, I think I will have to write to the GP to explain so he does not loose patience, skuse the pun.

I'm home now full time as his carer, I had to leave my job after 23 years, my employer would not support me b*******, even though my Tom worked at same place for 47 years untill they forced him to retire,

I dont know how much time my Tom has left, he was so positive when first diagnosed, he wanted to live, now we dont live, the intimacy has gone, we just exist day to day, the cancer is taking my man one bit of a time,

thanks for listening

Anonymous
  • FormerMember
    FormerMember

    thank you all so much for being here, I dont feel so alone now, I'm going to speak to the Doctor again today to sort out his meds, I increased the dose myself, which Doc said was ok, but the pain is still dragging him down, so it looks like another increase is needed

    dreading tomorrow, Oncologist appointment, my Tom had a CT scan with contrast 2 weeks ago, I know in my heart its not going to be good news,

    again my heartfelt thanks to all of you, you are my Angels

    Much love to you all

    Jessie

  • FormerMember
    FormerMember

    Hi Jessie,

    Welcome to the website, although I wish that you hadn't had to, don't we all, but, given the awful circumstances, so glad you've joined.  I put off coming on here for ages but so glad I have because I have gone from feeling so alone to feeling so supported.  Your blog is so sad, you love your Tom so much.  Please keep on coming to the site and we can all be there for one another.  Check out the thread 'husband is stage 4' on the lung cancer forum, lots of us in very similar circumstances to yours, lots of love and support flying around.

    Hope you coped ok with the appointment yesterday, let us know how you got on.

    love and best wishes, Elizabeth. x

  • FormerMember
    FormerMember

    I knew the Oncologist was not going to give us good news...the tumour has spread and is near his spine, he cant have chemo, or anymore radiotherapy, he may have to have surgery if it spreads to his spine?, so far he has not had any surgery as the cancer was to advanced, though up to about 3 mths ago you would not know, no cough, not lost weight etc

    but one light came on (I hope), he's being prescribed Tarceva from Monday,

    For the first time I asked for a prognosis, we were told months, how many months depends on how/if the Tarceva works, I so thought we had at least a year or more, did not see that coming.

    Its been a dreadful week, the pain was out of control, the GP gave me free hand to get the med levels sorted, which now I have, otherwise it would have been daily trips to GP to increase the meds daily, he is on double now from a week ago, today he is so much more like his old self, we actually slept all night last night for the first time in weeks, he did not wake me for help,

    And still the tears flow, I dont know if I'm sad or angry, I know I'm terrified of a future without my Tom, my life would ne worthless, He's always been the fit one, I thought I would go first, I guess thats cowardice on my part,

    Love & hugs to you all

    Jessie

  • FormerMember
    FormerMember

    Hi Jessie

    I have just joined the site too after realising that I am falling apart trying to deal with my sister having lung cancer and only months to live. Already it has made such a difference sharing others thoughts, I felt so much guilt at being weak and unable to tell anyone else how I felt. My thoughts are with you and hopefully with the help and support we get through everyone else's experiences we will get through this.

    xxx

  • FormerMember
    FormerMember

    Hi Tess,

    Welcome to the site no one wants to join, but here you will find help and support that is the best available on the internet.

    The blog you have replied to was last updated in 2009 and your message may be lost soon.

    I suggest you join the carers group and post there and you are more likely to get support.

    You are right that carers have a more difficult time than the patients. As patients we are very well looked after although our treatment may be savage. Carers can only imagine what we are going through and that is worse.

    Good luck on your journey, andd I hope you are able to find this reply.

    Colin xxx