Opted to forego treatment

  • 9 replies
  • 21 subscribers
  • 434 views

Hi

My husband had a seizure early December'23.

on 26th February he was told he had an aggressive glioblastoma, untreatable and incurable: 3-4 months without treatment; 12-18 months with treatment. Oncologist told him  that it had spread so much that radiotherapy would involve the whole of his brain; he could not guarantee 12-18 ,months, 3 months at most. The three months post radiotherapy would be painful and would result in him being bedbound without use of his functions.

He opted for quality and decided not to have treatment.  As a result he was passed over to the local palliative care team, they are fab!

Has anyone else gone through/supported a loved one with this decision?

Since Feb he has had two further seizures and a suspected focal seizure, without doubt the tumour has progressed, in the past couple of weeks rather quickly!  His medication now includes: Keppra, lamotrogine, sertraline, dexamethasone, MST continus morphine, sertraline, zopiclone, lorazepam, omeprazole. dexamethasone. propranalol.  In addition he has liquid paracetamol and oramorph

Each seizure has robbed him of some functionality.  He now sleeps a lot and has lost interest in everything that used to hold his attention.  particularly, this past two weeks has seen a massive decline. Sometimes he is confused and he has certainly become more unsteady and disorientated.  He does eat but not very much, and if I do not put the food out then he would not eat.  He is not able to dress/undress himself and needs help to wash.

Is anybody else going through this?  Or has anyone else been through it?  If so, how are you managing/how did you manage?

  • Hi AnxiousL

    the simple answer is Yes.

    My late husband was able to have surgery in Sept 2020 and accepted the 6 weeks of oral chemo/radiotherapy that followed. He said further down the line that he felt a bit railroaded into it but my memory of that time is slightly different. After the 6 weeks were up he refused all further offers of treatment. It was a hard decision but I respected it. (You can read the gist of our story in my bio)

    His symptoms were more cognitive than physical for over two years. He was more like a dementia sufferer than a cancer patient but it was a cruel decline to watch unfolding before me. I can honestly say I have never felt so useless in my life.

    How do you manage?....one day at a time. You find the strength to get through it from somewhere. G was passed over to over local palliative team in early March 2023 following our final call with the oncologist who told us he had days, maybe a few weeks. The local palliative team (community nurses and local community hospice team) were a godsend to me. Simply knowing that there was someone there 24/7 at the end of the phone lifted a huge weight off my shoulders. 

    In the end, G was with us until the end of October 2023 and looking back I really don't know how I coped. I just did. A few days before he was admitted to the hospice, the community hospice nurse was out for her weekly visit and she asked me how I was. I remember looking at her debating how to answer that when she said. "You're done, aren't you. Just done." By that point I was.

    Supporting someone through a GBM journey is tough - mentally, physically and emotionally - so please make sure that you are looking after yourself here too. Take time to do things to recharge your own batteries as you will need that strength at some point.

    This is a safe and supportive space so please reach out here anytime. There is always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now I'm sending you a huge virtual hug and lots of strength.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much for your quick and supportive response.

    It is really hard as he knows that he is a little confused and disorientated and he therefore feels embarrassed and this robs him of even more confidence.  

    He takes 12 mg dexamethasone which has completely destroyed his leg muscles which makes it even more difficult to walk, this has caused toilet accidents, not because he is incontinent but because he cannot move quick enough.  It's all so sad and cruel.  He seems to have deteriorated so much over the past 2-3 weeks.

    I seem to cry every day at what this cruel disease is doing to such a wonderful person. 

    Because there is so little research for this type of cancer we have decided to donate his brain to the brain bank for research especially given that he has not had any treatment.

    If the journey ends I lose my husband, if the journey continues he suffers

  • My dad is two weeks post radiotherapy, in hospital after a fall and subsequent pneumonia and I honestly have been asking myself over and over if agreeing to and going ahead with six weeks of radiotherapy was a mistake. The decline I see in him every single day never fails to take my breath away, 

    Sending my thoughts and feeling a little less alone reading through this forum on what has otherwise been a very lonely and scary journey for us.

    Just the most awful, awful disease. 

  • My partner had radiotherapy for a low grade tumor and he should have had a good prognosis.

    In fact the radiotherapy itself has caused brain damage and he now has severe physical and mentally disabilities.

    Of course we were warned about that as a side effect before treatment started but I guess we didn’t understand the implications.

  • I have the same diagnosis, although I a trying a couple of courses of chemo, however, like your husband, I'm wondering if I'm doing the right thing, ie. make the best of what I have left, and get itThinkingver with, very difficult and tough choices Thinking

  • Following a very confused weekend my husband went blind  which was very frightening for him.  His body became even weaker and I could no longer help or guide him when he used his frame.  The decision was made to catheterise him which I do not think he even realised.  He became very agitated and felt continually worried, he said he was "scared to death" and "very worried" on several occasions but, because of his inability to speak coherently, he could not express what his fear related to (terminal agitation?).  Over the week he was given more and more medication to calm him down which his body kept fighting.  His distress was also causing massive distress to district nurses too.  On Thursday he was medicated further.  It was an awful week, and I have never, ever seen, and never want to see again, a person suffer with such fear and agitation.  He died midday Sunday in my arms just 3 1/2 months after his diagnosis.

    When we opted for quality over quantity we did not expect the immediate impact nor severity of his symptoms; we did manage to laugh, we managed a couple of family days but it was a cruel disease that took a most wonderful man.  His legacy lives on with the donation of his brain to medical research in the hope that more can be learned to help diagnose and treat this disease in the future.  We hope that because he did not have any treatment his diseased brain will prove invaluable to upcoming research.

    The decision as to whether to accept treatment or not is a very personal one, it is clear each journey is unique.

    I send lots of love and hugs to all patients and carers; stay strong

  • So sorry for your loss. 

  • I am so truly sorry to hear of your loss and hope that in time you can find some small comfort in the fact he is no longer suffering or in pain and you were with him in his final moments. 


    My father opted to receive treatment and the decline has been horrendous from around week 3 of his radiotherapy with absolutely no quality of life at all and us being asked to agree to a DNR and being told the medical team will be withdrawing treatment of any ‘medical events’ (he has a pulmonary embolism which was found after tests last week) yesterday (5 weeks post radiotherapy). 

    my heart truly goes out to you and anyone affected by this in-discriminatory disease DisappointedHeart

  • so sorry for your loss. Life is too cruel. Please try to take some comfort over the fact that he's no longer scared and suffering. 

    Please remember that this community is still here for you. You're not alone.

    sending love and light and hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm