Home

First Love was sent home from hospital on Friday night.

They forgot to give us his medicines, so the first night and day were sheer hell as he was in so much pain. I thought the local doctor would call in, but when I rang the hospital ward in confusion at his pain, it became clear that I had to organise everything myself. So I had to drive back to the hospital to collect his medication, then call in at the doctors to tell them he was home and ill. But it was a weekend and it was a local holiday, so nothing possible until Tuesday. We now have 12 different medicines, which I had to make a chart for, and tick them off as he takes them, otherwise we both get confused / forget.

The reality is creeping up on us. The slightest thing sets him into spasms of pain which he says feel like an electric shock. So the phone rings and he has a spasm. The dog barks, spasm. He turns his head the wrong way in bed, spasm. So the sheer effort of going to the GP today in my car wiped him out. His pal came to visit and it was too much for him. I didn’t realise how tired he was and let the pal sit by his bedside for half an hour, and it was too much. He has only eaten a bowl of cereal today. Yesterday was better, despite having an occupational therapist visit to deliver walking sticks and a bed-lever thing which is basically like a small gate which he can hold on to to heave himself out of bed. Did I mention that I had to ring the occupational therapy department myself to arrange this? How do people manage if they don't have partners to care for them?

We do not yet know how advanced his illness is, but I have been reading the booklets supplied and I think we are in a late stage, I really do. The pain is in his lower spine, which suggests he might soon not be able to walk at all. His bones are dissolving into his blood, and the medication is there to try to replace the bone, clear the calcium from his blood, zap the baddies, keep his kidneys working, ease the pain (two sorts of morphine), plus a medicine to allow him to eat, and another to move his bowels because the morphine sends them to sleep. A daily injection to thin his blood: the district nurse comes in for that. He cannot catch cold or have a fall – either could be fatal.

Tomorrow I have booked tickets to take the kids to see Harry Potter. I am going to have to leave First Love alone for something like 4 hours, but have tried to time it so the district nurse comes halfway through, so will be a check on him.

I think the hardest thing for me is my sleeplessness. I will start to nod off and then he will moan or need to turn over and start swearing because of the pain. Sometimes his breathing is so loud I can’t sleep, then I am grateful that at least I know he is breathing. The kids are being good, but the trampoline rules are a problem I have made for myself – if I send them there, I have to go too! The dog has to be walked, meals made, washing up done. A relentless cycle.

On Saturday he felt well enough to walk outside with me and picked a fight with the neighbours about the steadings gardens. All his anger at everything came out at them because they were digging OUR garden. The woman got stroppy back and said “Oh well then I will tell the police that you drink and drive. I've seen you staggering.” He walked off. I said to the man “He just found out he has cancer. He is all over the place at the moment. I am sorry he spoke to you like that, but please stop digging.” And he blinked at me and said “I am sure anyone would be upset about finding that out but…” and luckily for him he stopped there. Cos there is NO BUT!

But... I HAVE done some knitting! The first scrolls sock is finished and it is fab. I will take a picture tomorrow. Right now, I just wanted to vent my frustration. And show you the basket of goodies from the NICE neighbours!