End of treatment

FormerMember
FormerMember
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Had a long talk with my Consultant today, it should have been a face to face appointment but I didn't get the appointment, just an appointment for chemo tomorrow.

My Consultant doesn't think there's any benefit in trying another chemo. It doesn't cross the blood/brain barrier, and although my latest scan shows more tumours in my liver, it's the brain tumour and spinal cord cancer that are the problem. The chemo is usually fairly well tolerated, fatigue and sickness, hair loss and risk of infection are the main side effects. I've had 3 bladder/kidney infections so far this year and 4 hospital admissions with complications from chemo, so am high risk of another hospital admission.

So we've made the decision, no more cancer treatment. I feel well, in fact better than I've felt in over a year of chemo, and am sick and tired of always feeling sick and tired.

My Consultant says chemo is unlikely to give me any more time, but the risk of infection for someone in a wheelchair with a permanent catheter is very high.

We've talked about this day as a family and now that it's here I feel confident it's the right decision for us.

It'll be hard to tell our sons and my twin sister, but there's nothing to be gained from flogging a dead horse. My brother had his op on Wednesday, and has been moved to another hospital to deal with a collapsed lung so it's a difficult time for us. I'd like to be as well as possible for as long as possible so that I can see my brother when he's out of the woods.

If things change and I start to get symptoms from the cancer in my lungs, liver or spine I can change my mind. Otherwise I'll be posting in the End of Life forum and don't really know what to expect from here on. We're having a stair lift fitted on Thursday so I'll be able to have a bath and shower, one of life's luxuries.

Need to finish the Memory Walk,I'm so grateful for the donations from here, especially as so many charities are struggling at the moment. xx

  • Oh Tinalay I know that you will have thought long and hard and made a tough decision. You're staring down a barrel right now and I wish I were there to give you a real hug and squeeze your hands. It'll be the news that your lovely sister, niece, two sons and brother don't ever want to hear but will respect your decision. If things were the other way around you would want your sister to share her news with you so that you could be extra strong and be a great support for her.

    I hope your brother can recover from his collapsed lung and get back home, your family needs a lot of help and support to get through this tough time. There is a lot of support groups out there that will help you if you want to turn to one should you wish to reach out to one or you may want to keep it in the family and us, your friends here. I know I won't be the only one from the site to reach out to you. I think I'm the first one and this I suppose is a benefit from waking up from back pain. Isn't life strange? 

    Take care

    Tvman xx

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

    I’m sorry that pain has woken you up  thank you for your support. We all know this is coming but it’s hard to be here. I know you understand and I’m really missing hugs at the moment. I’ve had all these difficult conversations on my own, my husband wasn’t allowed in the hospital at all, and yesterday it was a phone appointment. He’s very supportive and we all agree that especially after 3 years of treatment this should be about quality of life. We’re lucky that it’s spring & restrictions are being lifted, and if I’m not having chemo I don’t have to be too strict. xx

  • My thoughts and prayers are with you and your family unlimited hugs and love xxxxxxxxxxxxxxxxxx

    Flippen
  • FormerMember
    FormerMember in reply to Popgate

    Thank you  it does help xx

  • I was going to say in my earlier post to you  that when you tell your sister it would be hard not to hug her and your niece. I don't want to fall foul of admin but I would find it nigh on impossible not to hug my brother if my situation was the same as yours.

    Tvman xx

    Love life and family.
  • so sad to read this message. You come across as having thought this through and I admire you greatly for making the decision you have. I  wish you could have as many has as you want right now. Thoughts are with you take care x


    Richard

    be safe, be nice, be you 

  • FormerMember
    FormerMember in reply to tvman

    You're right there will be hugs I'm sure, we are a family of huggers at the best of times. xx

  • FormerMember
    FormerMember in reply to Remoh

    Morning thank you. My Consultant was very clear, she doesn't think chemo will give me anything in  terms of time or symptom relief and is very worried about the risks. We've had discussions on here about quality of life, and for me being able to engage with family and friends is really important after months of being pale and interesting on the couch. There have been days when I didn't  want to see our sons because I felt so flattened by chemo and side effects. 3 weeks ago the Dr I saw said he thought we would get 6 months of reasonable health with the chemo, so it's a big turn around but I'm relieved not to be starting treatment today. And I'm going to need a lot of hugs xx

  • My personal view about hitting that point is I would rather a few weeks / months of good life than many months of bad life. It’s a personal choice but I’d take a two hour great movie over a four hour rubbish one every time 


    Richard

    be safe, be nice, be you 

  • FormerMember
    FormerMember

    Dearest Tinalay

    I really don't know what to say... other than I hope to have such fortitude when my time comes.

    My thoughts are with you and your family - make the most of it and above all else, carpe diem!