Fishing with Matthew today, a couple of pegs at the top end of the second lake, on the far side. The weather was sunny, with a cool breeze blowing into us from between 9 and 11 o’clock (from the south) and light cloud. The breeze was playful early on, but dropped off towards the end of the session, fished from around 2 p.m. to about 6.30.
I set up Matthew with a cage feeder and showed him the basics of feeder fishing. He was up and running in no time, and caught a dozen skimmers in the session, on the red groundbait and red maggot.
I fed corn and meat into the left hand margin, and casters to the right.
Then I set up a kind of pellet waggler rig – but I think a moronic one; wrong float wrong hook.
I was on my three pound line on the new reel, fishing with my 12 ‘ shakespeare sigma float rod.
The light main line constrained my choice of hook, as most of my hooks are on heavier line, so I ended up fishing with an 18 maggot/silvers hook. I’d have been happier on 4 lb line, but that reel needs reloading.
I mixed up some green betaine expander pellets, but I didn’t follow the instructions properly, and they were too soft. So I used them as fed pellets and fished with a banded 6mm pellet banded onto the hook. I was using a waggler adapter (new kit) which worked ok.
I was surprised how shallow the lake was at the top end; only about 3 feet deep out to the middle, 2’ at the edge. I chose a loaded waggler, and I think it was the wrong choice. Also think a heavier float was needed to counter the effects of the wind on casting and in the water. Or perhaps I needed to fish with some weight on the bottom. Or with a bulk just off the bottom, and a few inches over depth. Anyway, something different.
I started by fishing at depth, with a slowly dropping bait. I don’t think I was clear in my mind as to where I was looking for fish. I didn’t commit to the bottom but quickly shallowed up, and then – as so often before, flailed around, casting poorly, spraying pellets everywhere and catching very little. I did get some skimmers after about 90 minutes, I think. But I wasn’t paying enough attention to the time, and I had little discipline.
I did get a couple of bites in the left hand margin, but it was too close to Matthew for me to be confident that it could hold many fish.
I failed to establish my rod rests properly, didn’t have my seat set up at the sides, and paid for this throughout the session. Also set the back of the seat too far back. I caught a lot of plants, and had a number of tangles on the reel – perhaps it is overloaded? Or maybe I just need to learn to be more careful with it. Also had that problem with the line looping over the end of the rod, perhaps because I didn’t have a good resting place for it?
Anyway, in the end I caught 6 on the float, just one of them from the left margin. I suspect I missed a lot of bites on the drop – I was waiting for very definite bites, but I think they were just little bobs, as I did hit one or two of those when I struck at them. Finally I switched to pellet feeder, and caught a couple of good roach in the last half hour or so of the session – though I really struggled against myself on the feeder because my setup was all wrong; nowhere to rest my rod, difficulty with the landing net – all frustrating. I used the very soft green expanders in the pellet feeder, with a hard 6mm pellet inside, and had no trouble getting bites.

Lessons from today:
1 Set up properly. Make sure I can rest my rod sensibly for the type of fishing I’m doing, and get all baits close to hand. This is very important for pellet waggler type fishing, when using catapult (which I really need to get better at), and if anything even more important on the feeder.
2 Pick an approach and stick with it for a set time. Use your watch to run the session to a schedule. If it doesn’t work within the time, switch to plan B and stick to THAT for the time you decided.
3 Whatever that loaded waggler is for, it wasn’t good for what I was doing today.
4 Make sure you know your bait strategy, and try to stick to it.
5 Don’t fish with 3lb line until you’ve got a better range of hooks on light hook lengths.
6 don’t wear the grey shirt again. And if you do wear it, don’t put anything in the pocket, and do the buttons up.
7 A frustrating and sub-par fishing session is still a real treat and a pleasure – and can provide valuable learning points.
8 think about your rigs, lines and so on ahead of time, and reload your 4lb spool.
9 once again my hook wallet emptied itself onto the grass. Find a better solution for storing hooks.

The last five months have been eventful, and for the most part in good ways. I’ve just reviewed my previous blog entrys, and I can hardly recognise the person I was before Christmas.

The worries I had about my buttonholes and fistula came to nothing, for which I’m very thankful. And my blood-pressure and anaemia problems are largely resolved too. My BP responded well to an increase in my dry weight – up by a couple of kilos, and my EPO (NeoRecormen) jabs every Friday have managed to push my haemoglobin up to 10.5 and keep it there. So I haven’t had a dizzy spell for months.

The restless leg problem seemed just to go, eventually. I don’t really know why, but I’m very, very pleased. Sleep is much improved all round, though I find it much harder to get out of bed than I used to. I do still have the occasional night where I fidget like a lunatic, but it’s rare.

I now dialyse at home, downstairs at the back of the house. A simple enough sentence to write – but of course it was something of a journey to reach this point. First of all we had a visit from an architect, to find out which rooms in the house were suitable candidates for the machine. Our initial plan had been to use one of the upstairs bedrooms at the front of the house, but this was not to be. The key features that are required for a dialysis room are access to water, and drainage. All our drains are at the back of the house. When we factored in the water problem, then the downstairs room next to the kitchen was the only sensible option, so here I am.

Having settled on a room, we had to re-organise the house. H had to give up her study, which was hard for her as it had become something of a sanctuary during the difficulties of the last couple of years, and M had to have his bedroom moved up into the loft. Then, a few weeks before I was due to start my training, a man came round to put down a ‘mat’ and fit the in and out pipes that would support the machine, and the water purifier. He also build some shelving where I manage to keep most of my dialysis supplies.

Then I started my training. The first couple of weeks were at the local renal unit, in a dedicated training room. I learned how to line and prime the machine fairly quickly, and having done this would then dialyse, and strip down the machine at the end of the session. My trainer, M, was brilliant – patient and supportive, and absolutely on top of everything, so I felt at all times that nothing could go too seriously wrong.

I wasn’t doing my own needles, and there had been some issues with one of my buttonholes, so M decided we should form two new ones. Having the same person on the needles at every session made the process trouble-free. Previous attempts to form buttonholes at the sattelite unite, where you can get a different nurse each session, had been much less straightforward, and not so successful.

After a couple of weeks training at the center, we shifted things and started training at home. M spent a lot of time going through the various things that can go wrong. Most regularly of all I had training in how to administer saline in the event of a BP crash, but we also covered power failures, blood and air leaks, and how to access support several times over. And of course eventually we had to start working on self-needling.

I didn’t like it. I still don’t, though I no longer grit my teeth to quite the same extent. It took me the best part of three weeks to gain any kind of confidence, but with M’s excellent support I got there in the end. I’ve self-needled about 70 times now. Sometimes it’s very easy, and the blunts just seem to slide in; other times it’s painful and awkward, and occasionally I have to use a sharp because one or other of the blunts just will not get into the vein. I used to see this as a failure, but now I take it in my stride.

Dialysing at home has changed my life. I can plan my schedule, instead of being tied down to the timetable at the unit – so if I want to go away for a weekend I can. I dialyse more often than I used to, but actually do a couple of hours less each week than before. (My routine is to do 3 hours for two consecutive days, then to have a day off, so I average fourteen hours per week.)

Of course, I have to set up the machine myself now, and this takes time. It is usually about 45 minutes from when I start to set up before I’m actually dialysing. Then I have to strip down and clean up, which takes another 20 minutes or so, so I think I spend more time dealing with dialysis than I used to. But the regime of more frequent, shorter dialysis suits me so much better, and my general health is very much improved. And being at home I have the internet and iPlayer, and access to any other entertainments or pass-times I might feel like while I dialyse. The kids can come and talk to me if they want to, and I get to see much more of them.

The dialysis machine is supported by a large water purifier, which makes a lot of noise. I’m planning to build a soundproof box for it over the summer. I have to change the filters on the machine every two weeks, and clean it chemically fortnightly too. Every four weeks I phone the supplies team with my order, and they deliver to me at home the following week. There is a lot of kit to look after; as well as syringes, saline, kidneys,needles, tubes, sharps bins, swabs, tapes, medicines etc I get through about 15 six-litre cartons of dialysing fluid each month.They take up a lot of space.

The biggest benefit has been psychological. I feel like I own my treatment now – it is something I chose to do for my own benefit, rather than a process imposed on my by others, and I’ve learned a lot about dialysis during my training. As a result I feel less sorry for myself, less like a victim, and more like a survivor. It’s surprising how big an effect such a change of perspective can have.

I’m now back at work full time. My employer has been superb throughout my illness, and I’ve been very lucky not to have financial worries to add into the mix over the last couple of years. I won’t pretend I find it easy; fitting in a full time job with dialysis and family life is difficult, and I still have the odd day when I struggle to see why I bother going on, but these days pass.

It’s taken me a while to work out the right regime for me. I got a bit giddy when I first took full control, and I cut my hours down just a little too much, and also started eating and drinking more than I should, but now I feel like I’m getting on top of these things.

There are some big family changes too. H is now taking out pupils in her driving school car, and starting to get the experience she will need to pass her part III exam.

A final note here – a few weeks ago I had a penile biopsy because I developed some lesions and skin-tags following the big operation I had last summer. I was worried that it might be yet another manifestation of the cancer, but happily got good news from the hospital last Tuesday. Nothing to worry about. So I can still expect to go on the transplant list this time next year. My younger brother J has offered me one of his kidneys – and his name is in lights on my heart forever for this – so there are some interesting times ahead…

A couple of rough days, and I’m no closer to working out the cause. Last week had been all energy and positive feelings. Yesterday and today, washed out, light- headed and useless.
I’ve had a bit of access trouble, so perhaps I’m not as comprehensively dialysed as I should be. On the other hand Sunday and Monday are my back- to- back sessions, so I should have caught up and be feeling better, not worse on this Tuesday morning.
I made some progress with my walking last week, getting round the big block (down to the college fields and then up to the pub and home ) on Friday without any trouble at all, but I didn’t make enough use of my alone time on the yoga stretches. I’m reluctant to push myself today, beyond getting the basic chores out of the way.

The access problem was all about my arterial button-hole. K needled it last Wednesday, but couldn’t get any pressure. Also she drew out a bit of clot at the start of dialysis -always unsettling. So she needled me up above the elbow, which is the first time I’ve been up there for access. It wasn’t sore, which I appreciated, and we ran the pump at 300 for the session. K said the buttonhole was out of commission permanently. So next session we went above the elbow which was fine, and ran the pump around 325. But Sunday it bumped, or blew, or whatever, so I have a nice bruise on my bicep, and we’re back to needling on my forearm, literally millimetres above the buttonhole. So I’m confused about what is still viable. Anyway, last nights dialysis was fine – a full four hours with the pump running at 400.

What I find hardest to deal with is the unpredictability of being a dialysis patient. I don’t know from one day to the next how I will feel, or how I will sleep, or if some complication will land me in hospital for three days. I guess access is one of the things that is most prominent. Sometimes the needles go in so I hardly feel them. Other times I have to grit my teeth and clench my toes to get through it. I’m supposed to be starting to needle myself, in preparation for home dialysis, but so far I just haven’t had the courage to do it. And access can pack up any time. My first fistula blew out completely within a few sessions -overnight, with no warning. Now I’ve lost a buttonhole before it was even mature. I’ve not really been told how much this matter… K told me it was a small thing – well perhaps. Nothing that affects my access ever feels small. I may be dialysing for another twenty-five years, and you can only do that if your access holds up.

On another front, I’ve been taking the Clonazepam for a couple of weeks now. I have it after dialysis, alternating it with Tramadol 50mg on non-dialysis nights. Sleeping much less disturbed as a result, but I don’t think I want to risk losing my natural sleep for much longer. Perhaps tonight i’ll try leaving my help in the box.

Today the first Autumn wind is blowing. The light could be the gold of late summer, but the way the trees are shaking their heads, fussed up and furious, deny it. The leaves are still green; when I close my eyes the sound is like the edge of the ocean.

The calendar shows it too. Equinox is just a week or so away. Here, at 56 degress N, we can feel the changing of the seasons in the chemicals of our bodies. Weeks and memories cycle round together. Moving up a year. Starting a new school, leaving home.

I’m ready for some changes. I’ve spent the summer in recovery, but over the last few days I’ve begun to feel fraudulent. Not that I don’t still have some recovering left to do, but I can’t be passive about it any more. The time has come for me to start pushing myself forward, both mentally and physically.

This may not be easy. Since I lost my only kidney I have lower levels of energy. I have days (not many, but some) when I don’t want to move at all; when washing the dishes seems like a stiff challenge, and reading a story to my daughter takes everthing I’ve got. I have to learn to let those days be, not to carry them forward, not to be afraid of them.

I have to exercise. My knees are starting to give up from – I hope – lack of use. My muscles have all reduced in size. I can barely walk a gently slope for 50 yards and this all has to change. So: I’m going to start with a couple of achievable goals and see how I feel when I’ve achieved them.

I’m going to start taking the dog out for a walk every day. I have a minimum walk that I know I can do, even on bad days, which is the short block by the school and the church. There is a climb (all walks from this house have a climb), and it’s a start.

I’m also going to do a bit of yoga – get my joints stretching a bit. Today I’ll start just with ‘The Complete Breath’. This is simply going from standing to tiptoes, moving my arms up as I climb, and controlling my breathing. I know from experience that it will be difficult; my balance won’t be there, or my breathing. If I can get a hold of this over the next few days it will be progress, albeit from a very low point.

Mentally I have to start preparing to go back to work, but I may let that go for a few more days.

My SAD light is still out from last winter. If I start looking after myself now, perhaps I won’t need it this year.

Last night at dialysis picked up my new prescription for restlessness during the night – Clonazepam. Haven’t read the leaflet yet. Helen informed me fairly cheerfully that one of the possible side effects is, wait for it … Restlessness. Happy to say I didn’t have any problem on those lines. I slept ok, better than I have been. Today has been ok. Not felt too bad, still a bit of dizziness but much better than Tuesday. This might be be use I got better sleep, or it could be because we left 500ml on last night. It is hard to tell, becaused there are so many potential factors.
Not feeling so cheerful tonight. The sky is winter black by 9.00 and I don’t like it.

By the end of my dialysis last night my BP had dropped to 80/55. I felt a little dizzy, and my vision was a bit bleached out, so, for the first time I a long time I had to phone my wife H and ask her to come and pick me up. H looked after me very nicely when we got home; cup of tea, sandwich, medicines. I sat up watching TV for a couple of hours, gradually feeling worse and worse. By midnight, I couldn’t sit upright any more and dragged myself up the stairs to bed.
H woke me with her snoring around two and I decamped to the sofa, where I spent the rest of an uncomfortable night, in and out of sleep a dozen times, rearranging myself over and over again to fight off the cramps in my legs that were trying to take hold.
Today my BP has barely recovered and I’ve got real physical fatigue. Raising my hands to type this is making my arms and shoulders ache. Showering and dressing was hard work – I had to stop for a few minutes rest half way through. The feelings of fatigue mainly locate themselves in my eyes, neck, shoulders. My legs are usually ok.
My neck,arms and shoulders feel as though I’m carrying a weight – it’s quite a lot like I’ve been carrying a 6 or 7 yr. old child on my shoulders for too long. It actually hurts a bit. The feeling in my eyes is harder to describe, but visually it is as if just taken my sunglasses off on a sunny day. There is also a subtle feeling of pressure and dryness (though no itching, thankfully). The fatigue is associated with feeling very dizzy when I stand up – when I’m in this condition I have to rest in a kind of standing slump for 30-90 seconds before I can stand up straight and move off. The worst thing for me on these days is having to get up quickly to answer the phone. I need to get better at having a handset close by me at all times.
I’m writing this down today because it’s a big problem for me. I can’t work from home feeling like this, and I certainly couldn’t go to the office. Today, I can’t even face taking on the washing up yet. I’ll manage it if I do it in shifts, I guess.
I’ve taken a midodrene 5mg this morning, but no sign of it working so far.

It’s been a tough week, one which I’ve spent for the most part on our big brown sofa. Not just the daylight hours but the wee smalls too, as I’m suffering with restless limbs in the night – tossing and turning dementedly, thrashing my legs about trying to beat the ‘buzz’. H can only be expected to put up with so much of this, so I bring myself downstairs, put the radio on, and wait for sleep.

It isn’t the broken nights that have laid me low this week, though I could do without them. I’ve been very tired physically, not able to stand for more than 20 minutes or so at a time, and feeling dizzy and sick when I’ve tried to break through the fatigue barrier. So my helpfulness around the house has been limited to short bursts of washing up and very little else. I have no idea why I’ve been struggling so much. We did have a very big Chinese meal on Tuesday night, to mark the end of the summer holidays, and I ate too much because it was terrific and we haven’t had a meal like it since my nephrectomy (I confess. I lost control.) and perhaps there’s a good reason for that… But I was feeling rough already.

I know this is the case because on Tuesday I went to consult with one of the GPS at my local practice, Dr. McK, about my restless limbs, and I found the walk back up the hill very difficult. My mood wasn’t helped by the good doctor’s refusal to treat me, on the grounds that dialysis patients are a subset of a speciality and he didn’t feel qualified – which has left me wondering whether it’s him I should be annoyed with, or all the doctors from that practice who have been willing to treat me over the last fifteen months.

Bt the time counselling came round on Thursday I was in a state of grumpy chunter, and the session started off with my casting around with small complaints. It was when we started talking about the big relationship in my life that we really hit a nerve. My illness – that’s the cancer, and the side-effects of dialysis, and my recent series of -ectomies, have left me effectively impotent. I have not begun to deal with this. It is creating distance between my wife and me, and I don’t know what to do about it. I also realised how much I miss being my old healthy self.

Counselling gives me a place to go where I can be unhappy without feeling like I’m failing, or burdening other people.

And who knows where the line is between the body and the mind, because I woke up yesterday feeling a whole lot better. I had an active day: washing up, tidying and cleaning the sitting room, hanging out some laundry and speaking to a couple of old friends on the phone. Doesn’t sound much, I know, but that’s the best I’ve managed for a while. Dialysis last night was ok. I’m getting more used to the blunt needles, but they do still hurt quite a bit going into the vein. Slept until 5-ish, which currently is quite good following dialysis, and finished the night twitching like an idiot on the sofa.