End of treatment

FormerMember
FormerMember
  • 57 replies
  • 52 subscribers
  • 8694 views

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

  • It s good to know where you are. We are here to listen to you and respond where we can. 
    your 3 good  things are always very good xxx

    Ruth 

  • I am so sad to read this Tinalay. I always think that strength comes from love, and I know you and your family have lots of love to see you through this. God bless you and your family x 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

    Community Champion badge
  • I remember when the oncologist told me that chemo wasn't working for me, all I felt was massive relief that I didn't have to have chemo the following day.

    The constant feeling sick and tired is exhausting, physically and mentally.

    Tinalay I think that a lot of us completely understand your decision. I hope that you have a decent whack of time, feeling well enough to enjoy it with your family.

    Much love, Stuart x

  • FormerMember
    FormerMember

    Tinalay, so sorry to hear your news, as you say you are confident the choice you've made is the right one, as one day it's the choice we all have to make, you say you feel well I wish you many many more days, months feeling this way who knows evens more years.

    sending love and positive vibes

    stay strong

    xx

  • Dear Tinalay,

    Thank you for sharing this, it must be difficult to make the decision, but the prospect of no more chemotherapy is lovely despite it's meaning, and I'm only on my first round.

    I'm glad that you feel well whilst making the decision, and the prospect of being able to meet more freely with family and friends as Lockdown ends is something delightful to look forward to.

    I look forward to hearing about the rest of your memory walk, best wishes to your brother.

    Love

    Sarah 

  • Dear Tinalay, I have only just seen this now. I have been having problems with the house WiFi.

    This is obviously the right decision for you, especially when your Consultant thinks chemo won't give you what it is meant to give. However it doesn't make the decision any easier. I am pleased you are feeling well just now and I'm sure your stairlift will make things a lot easier at home. We are always saying how it is the little things that matter but having a bath or shower is NO little thing! It is always near the top of the To Do list when you get home from being in hospital. Only topped by a cup of tea and a sleep in your own bed!

    Take a few candles out of youur Therapy Room and put them in the bathroom the next time you have a bath or shower! It can make it a great experience!

    I am sure we are all hoping and praying you stay well and free of infection for a very long time to come. I am sending you big virtual (((HUGS))) and know it won't be long before Lockdown is over and you can hug anyone you like. By that time you will already have had many hugs from your family! Please don't rush off to the End of Life Group just yet, or maybe if youve time you could post in both groups!

    I do hope the doctors have it wrong again and you are just the one to prove them wrong. I can only imagine how difficult it must have been going to these appointments on your own. Let's hope your brother is as strong as his amazing sister and his recoveryy is quick, so that he is home soon! Take care my friend and take it easy on the Memory Walk!

    Love Annette x

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

    Thanks  it really helps that people here listen...& surprisingly unusual! My step MIL still says things like’  but you’re fine are’nt you’ The other day she told me she had a bad back, sometimes she could barely walk & that she’s had an MRI. She asked if I’d ever had one...xx

  • FormerMember
    FormerMember in reply to chellesimo

    Thanks  you’re right, I’m so lucky to have a close and loving family. My FIL hasn’t spoken to his daughter & family or son in 17 years. He’s seen more of my family in the UK than his Aussie family who live 20 mins away. There was a big falling out partly over his 2nd wife. He wanted her to play best granny with his grandkids but didn’t have much time for them himself. One of his grandchildren was only 3 weeks old when he saw them last. My SIL promised me she wouldn’t be rude to the 2nd wife. She then called her a ‘gold digging slag who was leading her father around by the duck’ There’s no easy way back from that! xx

  • As Ruth says, unbelievable. I find all that sort of behaviour so strange because none of my close family have fallen out with any other close family. Come to think of it not even not so close family. People say or do something you might not agree with but to think that some have fallen out with family to the extent that they don't or won't see their grandchildren grow up is incomprehensible.

    Take care and stay safe Tinalay

    Tvman xx

    Love life and family.