Update on my brother - not good news!

Hi I just wanted to update everyone as people have been so lovely about my brother, who is severely mentally disabled and has stage 2 testicular cancer.

He had his first chemotherapy dose under sedation (needed in orfer to even get him to the hospital) and a general anaesthetic, unfortunately it did not go well at all, the sedation was not enough to calm him enough to get him to go into the hospital, in fact it was so bad the anaesthetist himself had to come out to the carpark and further sedate him before taking straight to theatre in a wheelchair for his general anaesthetic.

Sedationg him took an hour

He then had a blood test to work out his chemo dose (as he cannot even cope with having a blood test while awake)

he was given three lots of anti sickness while under, before having the chemo dose. I was shocked to find out afterwards that the dose he was given was in fact equivalent to what people would normally be given over a seven day period, surely that is a lot for anyone to take in ONE dose?

He was in theatre for more than 3 hours, but the other major problem was it took 4 hours for him to come around after the general anaesthetic, no matter what they tried he would not respond, in the end he had to be given another drug to reverse the anaesthetic and he finally came around.

Sadly but understandly the anaesthetist has said he will not risk any other sedations or general anaesthetics,which I have to agree with him, but this then does mean there wil now be no further attempts at treatment so will only be palliative care from here.

It also means he cannot have any more scans either as he has to be under a general anaesthetic for these too as he will not allow anyone near him and will not keep still, even when sedated.

He lives a long way from me but I am going to see him in the week(did not go to the hospital as it would have made it more stressful for him as there were so many people there already with his carehome carers, nurses, doctors etc.

He is already on morphine and when they examined him they said they could feel his lymph nodes had got even bigger and that he looked more ill than when they saw him in February for his only CT scan, this is all happening way too fast.

  • Hi Serendipity,

    Thank you for updating us regarding your brother. It must have been a very frightening experiance for him. I am sorry to learn that they will not try again but can understand the reasons why. It must be a very big worry for you and for your family too. I bet he is looking forward to seeing you again.

    Take care, sending best wishes and kind thoughts, Brian.

  • Hi Serendipity,

    Just wanted to send you, your brother and the family a virtual hug at this difficult and stressful time for you all.I hope your brother will enjoy your visit and cannot begin to imagine how you can help to explain to him what is going on as he must be totally confused about the changes in his physical condition. It does sound as though the medical team/his carers have tried their best to do as much as they are able given the severe nature of your brother's disability and now hope they can find and manage, with imput from your family/his regular carers, a good way to keep him comfortable through palliative care. My husband had good support for nearly three years on palliative care though compared to your brother's situation, his was straightforward pain relief. I hope the forum community can, in some small way, continue to help you through this journey. Regards Jules54 

  • thank you both so much, I am devastated,  and have no idea how to get through this, he means so so much to me, more than I can ever express, he is more like my own son than my brother, even though he is 3 years older than me.

    We lost mum to cancer without any warning only 2 and a half years ago.

    It is impossible to know how much he understands as he is unable to communicate either, I just hope he is not aware of too much of what is happening. He is already on morphine, whci they said has a lot of scope for increasing the dose (hes on 30mg twice a day at the moment but also taking other painkillers)

    He has been getting itchy puffy legs since the morphine and the hospice nurse told his carers to use special stuff in the bath so we are going to see if it helps.

  • Hi

    It is not at all easy watching someone you love  going through such a devastating illness and I found it so frustrating not being able to solve the problems that cancer caused.  Like your dear brother, my husband was on a cocktail of different painkilling medication (including morphine) which was monitored to make sure he was kept comfortable. With your brother being unable to communicate for himself I am sure his carers will keep a close eye on him, as always, and let his palliative care team know if they become aware of any distress he seems under. You mention that his legs had been puffy/itchy and I do not have any medical understanding of these things but again my husband had creams for various dry areas(and sore spots) so it is always worth making the staff aware of any changes as there is nearly always something that can be tried to help.  Fingers crossed the bathing in special solution will be of benefit.

    Jules