I simply cannot get my head round things at the moment. We went in to the hospice this morning and what do you know… he’d just had a jacuzzi! I ask you – how could he possibly have been well enough to eat a bowl of porridge and be taken for a bath?
The best explanation for how he is at the moment is the way I talked to the children about it. It seems to be like those times when we’re really tired and desperately want to sleep but just don’t want to miss anything. He seems to drift into a dying state; unresponsive, delirious, eyes rolled into his head, sleeping deeply and barely breathing; then he seems to bring himself back to the surface and engage fully in life around him for fear of missing out or letting the life he loves go without a struggle. It will be a matter of time.
The children’s responses have been mixed. Smudgelet thinks deeply and is distraught, verbalising such adult feelings. Tiddles is refusing to think, but indicating his distress and insecurity by a reversion to his five-year-oldness, a developmental stage which is often irritating but especially so at the moment. But when we visited my father and the boys begged to be allowed to see him, it was Tiddles who entertained him with stories and Smudgelet who hung close to me and was unable to relax in his beloved grandad’s company.
For once I was glad of homework. This afternoon was delightful. Smudgelet merrily settled to doing some gardening with his Auntie while I concentrated with Tiddles on his homework – a much needed bonding activity and one that occupied both our minds and both our bodies. He is to do a project on a local river, following it from its source to the river mouth and sketching/photographing/describing key features as well as doing soil samples, measuring deepness etc. We are perfectly positioned with the most interesting of rivers to investigate. We had great fun, wading in the shallows and gathering our evidence, complete with a dead crab which showed very clearly that the river was tidal. And Tiddles was in his element.
The next 48 hours will be decisive. Dad is so very ill.
This afternoon he said the only decipherable thing of the last 24 hours – though very “dad”. He was feverish and we mopped his brow with a cool, damp flannel. He sighed and muttered something we didn’t quite catch. Then he repeated it, the word only just coming from his unmoving mouth: “I hope that isn’t the flannel I use to wash my backside” !!!!
A third visit, this evening. He was deathly – did not respond at all to touch or sound, eyes rolled into head, mouth agape and moving slighly, skin pallid. I asked him if he wanted a drink as his lips were parched.. and nearly jumped out of my skin when he said “Yes please”! It was as though he dragged himself back from the edge at that very moment, from a very deep place, and we were able to have a chat and share a laugh together. The nurse said he’d improved slightly during the afternoon and had even had a little soup, though his insistance on feeding himself meant that he was wearing most of it. But she also warned us that patients often have a short reprieve like this before the end – the same happened in some respects with mum, and the memories of that come flooding back – and it still doesn’t indicate what way things might develop. And to be honest, we don’t know which way we want things to develop.. But it was nice to share a laugh with him and know he’s in no pain.
This afternoon, as a break from the emotional rollercoaster which is life at the moment, my sister and I decided to go out for a couple of hours, first for a rather scrummy lunch at Brading Roman Villa and then for a training walk on the Downs. The Walk the Wight is looming rather scarily on the horizon and I am rather noticeably unprepared for it.
It was a lovely afternoon, but rather windy, so we decided to venture down a favourite path which led down to the Brading butterfly walk, a chalk quarry site which has been planted with wild plants to encourage butterflies and includes some wickerwork and carved models by local artists and children (though somewhat in need of renovation). It was such a lovely walk. We saw a fair few butterflies, including one which I am convinced was the Island’s own Glanville Fritillary – a rather dull butterfly for such a grand name, being brown with brown spots, but for all that an exciting sight as it’s found only on the Isle of Wight and nowhere else in the whole wide world. By unspoken agreement, we focussed on positive chat and it was blissful to feel no obligation to anyone, just having a lovely walk with my sister with whom I am very very close.
I tried out my new digital camera a few times, though the pictures are being saved for another day. It was then I had my brainwave. I should collect photos from various spots on the Walk the Wight route……. and then post them on here one-by-one on May 14th while enjoying a cup of coffee and a box of chocolates in my favourite armchair! 😀
It would cause Smudgelet great embarrassment if I were to share with you the story of what happened this afternoon….
… the story of how two shipmates came over for the afternoon to take the boys out for some fun while my sister and I sat at the hospice (and also had some quality time together)
… the story of how they all went to Robin Hill and the children got really soaked playing Splash Attack (a brilliant game where there is a board with buttons which light up at random and, if you don’t hit the lit buttons fast enough, they squirt a jet of water at you)
… the story of how some small person had forgotten to put any pants in his bag of clothes to change into and so was advised by said shipmates just to put his trousers on
… the story of how, a little later in the day, they were walking down a nettle-ridden footpath away from the car in a deserted and derelict old holiday village (forgive us our “trespasses” !) en route to the secret beach when a certain small person discovered that he wished he’d visited a toilet before he set out… and not for any minor purpose either
….. the story of how the assembled company had no tissues or wet wipes or other convenient wiping materials with the exception of one church news-sheet….
… the story of how they arrived home minus one church news sheet and how a certain small person waddled at high speed past the greeting mother in search of a washing machine and a bath…..
… and the story of how a shipmate entrusted with the care of certain small person had been unable to help him in his hour of need due to a cruel and heartless burst of the giggles!!!! 😉
And Dith, you’re right. I shall be emailing tomorrow. You too, Jennyanydots.
Thank you, everyone, for all your support.
In many ways the news today has changed nothing. For me, I knew already about the situation and am, in some ways, relieved not to be holding this secret any longer. But it’s hard knowing that Dad knows and having nothing I can say that will make things easier.
He’s no iller than he was this morning, except that he is. As you might expect, he has declined tonight as the bolster of denial has been siezed away from him. He is very confused and vulnerable.
Thank you, Dith, for the words of the “long-distance-daughter” which was the catylist I needed to swallow my pride and phone my sister and ask her to come. It will be easier to cope with some moral support at hand, even just for the weekend, and it will get me through tomorrow’s appointment which is something I could do without having to be bothered with right now as I simply haven’t the energy to think about it.
Meanwhile I am getting an early night tonight 😀
The news was as expected. The prostate cancer is growing rapidly and no longer responding to treatment. The bleeding from his bladder means that he cannot take aspirin any more which means that the only other medication to halt the prostate cancer cannot be given because of the inherrant risks if not taken with aspirin. Result – there is no longer any valid treatment to arrest or delay the cancer apart from the interesting approach of stopping his cancer medication altoghether which apparently has a slight chance of jolting his system into doing something for itself.
The weakness and sleepiness could be due to the growth of the cancer. At least that is giving Dad an explanation for it.
Please pray for comfort for Dad tonight as he faces coming to terms with this news. And for the rest of the family too as we face this not-unexpected news with the utmost of mixed emotions and a sense of helplessness.
You’ll be pleased to know (though not as pleased as I am) that a friend of Dad’s has agreed to come and daddy-sit and make lunch for him on Friday. This is a good thing. It means I can go for my consultation with a clear mind and concentrate on the matter in hand. Hmm… is that a good thing?
I was in the doctor’s waiting room – the real one, not the one here with Doctor-2B-Yay – waiting for Dad to come out from his three-monthly visit to the nurse and I got talking with a lovely old lady who was telling me rather racy tales of her childhood! Suddenly she said “You know, I wouldn’t be here today if it weren’t for St Mary’s”. I was impressed and told her how rare it was to hear people sing the praises of our local hospital. She disillusioned me very fast. “No, I mean I wouldn’t be here at the doctor’s today, getting treatment for an injury they caused during a routine small investigative operation”. She went on to describe in eye-watering detail the mistake the hospital had made and the ensuing pain and discomfort that simply wasn’t going away.
Suffice to say it was more eye-watering for me than for the other patients in the waiting room. Did I mention I was going to the hospital on Friday for the consultation prior to a small investigative op?
He’s not well. But it’s impossible to tie down (as is he!). This is possibly the worst, where he is neither consistently ill nor consistently well. Both relatively speaking, of course. A colleague today who lost her child to cancer said how the illness creates a new level of language which means different things to its everyday usage and puts you in a slightly separate world, and she was so right.
It’s been so up and down with dad for a few days, varying from really quite ill to really quite bright and perky in the space of moments so that you never know what to expect and can take nothing for granted. Pain, confusion, intense sleepiness, sickness, loss of appetite, all coming and going in waves through the day, alternating with times when he’s completely on the ball and totally active – I came off the phone from asking my sister’s advice because I was so worried about him, went round to see him and found him doing a load of washing and hanging it out. This morning I stayed off work for an hour to help him get ready for the hospice, went round to get him up and found him already up and dressed and having his wash. I left him to it, calling round at intervals to check on progress, and once I had been lulled sufficiently into a false sense of security to go and get myself bathed and dressed and ready for work everything came to a resounding stop and he fell asleep in his breakfast, nearly falling off the chair as he felt suddenly weak and wobbly and confused. I went round to see him into hospice transport and discovered him only half dressed and without having eaten or drunk anything at all, including about thirteen tablets!
It’s hard. My sisters weren’t planning to come this weekend – one is exhausted after a trip away and the other has a special weekend away planned with her husband – though both are more than willing to make the journey if they’re needed. But are they needed? When he’s at his worst they are, when he’s at his best or nearly so I can manage just fine alone. Biggest problem is that I have an appointment at the hospital for myself on Friday afternoon, one I don’t want to discuss with him, and yet if he’s unwell I won’t want to leave him alone all day and getting his own lunch. And when he’s so up and down, it’s difficult to explain at school about things – one minute I’m in tears having left him in the morning on hands and knees being sick into a bucket and the next they see me walking him up the street, admiring the spring flowers. One minute I’m asking for time off without pay to see him through his final weeks, the next we’re up on the Downs enjoying the spring sunshine and making plans for the summer.
Cancer clinic tomorrow, though. I have a feeling the news will not be too good.
It was rather nice this evening.
Smudgelet does not really need to go to bed as early as Tiddles (despite being the younger) and Tiddles has asked that his brother be allowed to stay up a bit longer so that he, Tiddles, has chance to get to sleep before Mr Chatty comes in the room. This has become more imperative seeing as they are having to sleep in the one end of the room together while the other half is full of all the clutter moved while we were doing all the DIY. One day I shall have to do something about it all!
So this evening I gave it a try. I tucked Tiddles in, then took Smudgelet off into the lounge for an extra half hour. It was delightful. I fetched him “Diary of a Killer Cat” by Anne Fine, a lovely and very funny book, and he and I curled up together on the sofa, reading side by side. I finally found myself engrossed in a book once more – half an hour of peace to read before I’m actually too tired to do it, but no interruptions from quarrelling or playful boys because Smudgelet, a budding reader, was engrossed in a story of his own. I am currently, therefore, rediscovering a teenage favourite, Rosemary Sutcliffe and reliving the adventures of the Eagle of The Ninth. Bliss!