Puppet on a string

Not a conversation anyone should have about their child. How long do you want CPR to be performed? Do you want them to be put on a ventilator? Do you want them to die at home, at the hospice or in hospital?

We had the meeting to plan for dealing with illness when he's well, when he's in decline and at the end.

There were so many people there they had to use a seminar room:

- Oncology consultant
- Palliative care consultant
- Paediatric consultant
- Social services
- Community nurse
- Clinical Nurse Specialist (oncology)
- Clinical Nurse Specialist (family support)
- Hospice outreach
- Home nursing agency
- The parents

Good of them all to give up so much time for a little boy. But so hard to endure. Having to go through his history yet again. Having to discuss symptoms that will show the tumour is progressing. Having to discuss what treatment it is and is not worth having at the end. Emotionally draining. And then back to work.

Someone said how brave we were for having the meeting. I get unreasonably annoyed at that type of statement. I don't feel brave nor do I think we are being brave. I feel we have no option and sometimes just a bit patronised.

Got home to an excited boy. The hospice had got him a signed photograph from Mr Tumble (children's TV character). He was thrilled, wanting to show the photo round the house. Made the emotion from the meeting that bit harder to handle.

Monday Monday

First big meeting with medical people coming up on Monday. The first time to have a meeting based on the "he's going to die" premise, rather than "can we cure him".

We get what looks like being formal handover from the oncologist to the palliative care consultant. The meeting should be those two, the local hospital, the community nurses, our local doctors and the hospice. Have to decide what appointments he should continue to have and what we wish to drop, whether if he's ill we still want him to come to hospital or try to treat him at home (higher risk), what medication we are prepared for him to have when he declines and where we plan to spend his end (home or hospice). Can't wait.

Also, finally got round to telling my boss what's going on. Never easy discussing non-work things. He does that uncomfortable not meeting my eyes thing. But what can you say in those circumstances?

Meanwhile, the boy's still trying to get over his line infection. But he's otherwise not too bad and happily meeting more people now he has a modicum of immunity.

I see a different you

Having decided that we are not going to go ahead with further treatment for the boy, I finally got round to writing to the Big National Hospital to tell them. Been putting it off for some days. Didn't want to do it. A sense of finality about our decision in telling the hospital. Hard to write the email - one of the hardest. Hid behind clinical language. Still feel guilty about not going with further treatment, despite the decision. And rather empty. Everything will now move from the oncology team to the palliative care team.

Shopper's Paradise

Yesterday's talk about palliative care and whether to bother with certain hospital appointments rather shook me. And made me think about what I should do, particularly on the work front.

Tried really hard to make the best of my Saturday with the boy, even though he was cranky because of the virus. He spent Friday afternoon constantly wanting Mummy and Saturday constantly wanting to go to see auntie. I explained she had gone out but he was unconsolable.

Eventually, he calmed and we agreed to go to the shops to buy cake and milk. Happily wandered round the shop. Happy to pay. But after paying, he said he wanted to go to auntie's house. I explained for the umpteenth time that she was out. So, he broke down at the checkout. Tears, beating his head, slumped sobbing by the buggy. I tried to explain again but it was useless. Everytime he let go of the buggy or was distracted momentarily by another customer, I moved the buggy forward a few inches. Took us half an hour to get to the front door of the shop. And then he seemed to notice the automatic doors for the first time. Spent ages sitting on his trike watching them open and close. He was so impressed. Kept pointing them out to me as if I'd also never seen them before.

But by the afternoon I was worn out in that end-of-week way. Just too tired to enjoy him. Just doing minimum cares to get me to the end of the day and his bedtime. Nothing I haven't known before. But added poignancy now that there are a finite number of Saturdays. Who knows how many. I need to do something about work. I don't want to get to his end with regrets that may stalk me.

Heart it races

Apparently, the average child of 3 has something like 40 illnesses a year. Well, the boy has either had a low level one for the past couple of weeks or a succession of illnesses.

The wife rang the doctors about the boy as he has had a temperature on and off for the last few weeks. The 40 illness statistic was from the doctor who rang us back (not his usual one). She was cheerfully telling us about "normal" children and illnesses and not to worry. Her brain not taking in that the boy isn't "normal". This was after the wife had explained that the boy has a trachy and a brain tumour. Had it been face-to-face I'd have been tempted to slap her or rather to have stopped her and told her to listen to his situation. Like normal children have reduced immunity from chemo. Like normal children have trachys. Like normal children have had three brain operations. Pah! If it's not his usual doctor, the local doctors are not much use to us. They probably spend so much time seeing minor ailments that they have difficulties when faced with something serious.

Difficult day at work at the end of a difficult work week. But probably not as difficult a day as the wife. The Community Nurse, the Oncology Nurse from the local hospital and Paediatric Palliative Care Consultant from the local hospital all came over. They were starting to do the planning for the future. Do we want to spend time at home or in hospital? Do we want him treated if he's ill? And other happy issues. This was just a starter. We have a full-blown meeting to come in the next few weeks.

Meanwhile, the boy spent a thrilling hour standing on a chair so he could see the girl next door over the fence. He adores her. She is 7 years old and a thing of wonder for him. And she had a friend from school round. He was ecstatic when they were prepared to fetch a ball he was throwing over the fence. It is rare that something makes him giggle uncontrolably but this did. Was lovely to see.