Monthly Archives: April 2013

The 70p man

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Having had a relaxing weekend, real life is waiting just around the corner like a wet kipper slapped round the face, to jolt me back on my toddler reins. Toddler reins in my attempt to get back to ‘normal’, whatever that is. I have been through my diary like a blitzkreig, cancelling, crossing out and re-arranging dates. If you have made the final cut, you’re doing really well. Even pleasurable and fun events seem too weighty, too burdensome. But something has to stay in the diary so I knock out the slightly less entertaining and keep the better gigs. Everything and anything can bring about a state of panic at the moment, mostly self-induced by being far too optimistic about how much I can take on. At good moments, and it does change moment by moment, I feel I can take on a whole host of challenges. At other times, these fill me with a creeping dread.

I am guessing some people may feel offended by my postponing, cancelling, re-arranging or else by my complaints that I have too much in my diary. Well, who put it there? Yes, I hold my hands up. It was me, not thinking clearly when I added you to my diary. It does not mean I love you any less but just that my head can’t hold enough and my body is too tired. There is a mental, physical and emotional exhaustion that goes with the aftermath of cancer treatment. Beating myself up does no good but does come automatically, somehow.

Leaving Maggie’s after a great singing session this afternoon, I sat on a wall reading and waiting for my lift. A man came stumbling out of the A&E department, shouting loudly and waving his arms about. He caught my eye. “Excuse me, excuse me!” he called as he came crashing towards me. He explained his English was not good and then proceeded to tell me his brother had been taken to hospital in an ambulance but that he wasn’t at this hospital. “He’s not here!” he yelled. “Where is my brother?” He didn’t appear to be asking a rhetorical question and I didn’t know what to answer without getting into a long involved conversation. At this point my lift arrived. I told him I had to go. He asked me for a cigarette but I explained that I didn’t smoke. For a moment he looked at the ground, slumping his shoulders in a defeated way. “Can I have 70p?” he asked. It was such a specific amount I almost gave it to him. What can you do with 70p? You can’t get on a bus with 70p and I doubt you could buy much more than a chocolate bar. Maybe that was what he wanted – a consoling bar of chocolate. I hope he found his brother.

The view from the aqueduct

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We decided to go to see the Pontcysyllte Aqueduct, a huge feat of engineering. This was possibly not the most sensible decision we ever made, given we were comprised of a man with vertigo, a man with one leg, two middle-aged rather unfit women, one recovering from cancer, the other from a heart attack and Dog. But never say die! We don’t think of our limitations, only of what we want to do. So we set off, Ruth only thinking to mention the height aspect when we were crossing the car park. “Everyone is OK with heights, I take it?” Hmmm. We have had some interesting adventures with the height thing. In South Africa once, on a guided visit to a monkey sanctuary, the guide suddenly asked the same question. “We have one of the highest treetop walks in Africa!” he proudly announced. Cue Mark to go green at the thought. “Last week we had to take a pilot off in a cargo net” he said, chuckling at the thought. We had a choice – go back the way we had come or go forward and risk the humiliation of a cargo net removal. We decided to go forward and did OK. We had a similar experience in Borneo on Mount Kinabalu. The treetop walk there appeared to be constructed of aluminium ladders covered with planks, the sides remaining tantalisingly out of our grasp at times. Mark insisted I went first at high speed so I missed all the hanging over the side moments, taking photos and marvelling at the height.

“Do you think you can make it over?” I asked. “Hmmm, probably not” he said. “You’ve done worse. You’ve crossed the bridge over the River Kwai – or some of it. And this doesn’t have trains running over it, either”, I pointed out. But the decision was made that Mark and Dog would go down a path at the side of the Aquaduct, Ruth and I would go over the Aquaduct and Philip would sit on a seat given that he couldn’t go downhill and had been across before. We set off, shouting “Oo oo!” over the side, trying to attract Mark’s attention. After a while of crossing, we decided it would be easier to go down the path and join Mark and Dog. We found either a) an art installation b) an alfresco toilet c) a strange item of rubbish.

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We walked down to join Mark, not thinking of the basic law of physics which says what goes down, must come up. A million steps later, we had a nice walk talking about taking revenge on people who have been really horrible and taken advantage of their position to bully, especially in the workplace. Mark suggested we set up awards for ‘Worst…………..’ (fill in the blank yourselves) and then award a runner up prize to the bully, showing they are not even good enough to be the worst at something. Ruth thought this was an excellent idea and spent all day sniggering at it. We set off climbing back up to the top. Ruth advised “We have to go up in stages and pretend we are stopping to admire the view”. I was way ahead of her on that one. It is only 126 feet high (or 38 metres for our metric cousins) but we only have little legs.

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Farewell wifi Alice

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As I so often say, it’s been a funny old week. No one week seems to be like another and it’s quite disconcerting to have so much choice and potential freedom and yet to spend so much time doing stuff all squashed together. I had a dream last night where someone was explaining to me that I had something wrong with me which explained a lot about how I functioned. It was immediately one of those Eureka! moments where everything suddenly makes sense and I realise why I am how I am and that it’s actually OK to be like that. Cue reality and the dawn and none of it makes sense any more. Sigh.

We’ve been away for the weekend, spending it with friends just outside Chester. They are a lovely couple, frighteningly intelligent and funny and one of them has only one leg but I won’t tell you which. That is, I won’t tell you which one has only one leg, not which leg the individual is clinging onto. They also have unsecured wifi called Alice, which I really like. It is both generous and touching in its naivety.

The drive up was horrible. The usual ‘congestion ahead’ notices meaning cars slowed down on the M6, thus creating congestion. We received a heroes’ welcome and settled in for an evening of good food and conversation. The following morning it was sunny! An absolutely perfect day weather-wise was matched by a lovely day travelling around bits of Wales. At an aqueduct, we marvelled at the feat of engineering and daring thought that had created it and then watched a party of inebriated young people steer a narrowboat into the side of the canal and come to a sudden stop, causing lots of the young people to fall over. This I enjoyed very much although wished they weren’t quite so inebriated or rowdy. They then proceeded to tether the boat, firstly to the side of the canal opposite a junction, causing a canal official to tell them “You can’t park here” and then to the other side where they all jumped ship and picnicked at the side of the canal. They must have travelled all of 100 yards in their boat. But the weather was spectacular and I caught the sun. Mental note to buy high factor sun cream now we have had one day of hot sun this spring.

We also went to Plas Newydd, a beautiful house owned by 2 female friends in the early to mid nineteenth century. There was much speculation about the sexual orientation of the two friends who seemed to want to live the idyllic Romantic life, away from society. They lived on very little but had a considerable number of very wealthy and influential friends who visited them, bringing gifts, money and pieces of carved oak from around the world. They patched it together and had it installed around the house in an amazing patchwork of styles. They also salvaged stained glass and had it soldered together in leaded windows, creating an amazing rainbow of colour. Having run away together from Ireland, causing a huge stir in the process, they were horrified when a female friend, having lost her ‘special friend’ to a convent, asked if she could come and live with them. They favoured masculine clothing and did not like sitting for portraits so the only ones available are those done somewhat furtively. They seemed to have been huge celebrities in their time although it seemed their lifestyle was the thing they were most celebrated for.

This week is going to be another busy one. Despite my intention to do things slowly, have time to relax and rest, I seem incapable of clearing my diary for a week. My mind is racing way ahead of my body most of the time so I am hoping my body will catch up. The bloody lymphodoema compression sleeve is mis-behaving in that it keeps rolling down. It’s at this point I remember the nurse saying “It mustn’t roll down or you might get a blood clot” so will be going back to the hospital to show them the recalcitrant sleeve and see whether they can provide a better behaved one. Fran suggests they make them with the slightly sticky rubbery stuff you get on the inside of hold-up stockings. I think this is a good idea so may enquire if they have such a thing. The tattoo sleeves have proved a massive hit and once I have a compliant sleeve, I will post photos.

Where is Spiderman when you need him?

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Oh, back to the compression sleeve. I decided to take Sundays off on the grounds that I am not perfect and the sleeve is very disturbing to wear. It takes me ages to put it on and I am unable to settle the band at the top properly without help. Today is a classic example, even though I have only had the wretched thing a week. Mark has gone out early to a meeting so I have to put the sleeve on myself. I need at least 6 hands. I struggle and sweat over it. It takes me about 10 minutes to get it fully up my arm by which time I am hot and very, very cross. Then it does something which is already so familiar and depressing. The top begins to roll down. This is something I have been told categorically MUST NOT HAPPEN or I am at risk of developing a blood clot. I need braces for my compression sleeve. I feel I need to sellotape around the top to keep it flat except, of course, that would be more pressure and may lead to – and I sense you’re ahead of me here – a bloody clot.

No-one tells you the end of the story when you develop cancer. Probably because the stories end so differently and, don’t get me wrong, I’m very happy my story isn’t over yet but I didn’t understand any of the possible stages after the first wave of terror had subsided. I thought six months of treatment would sort me out. I’d lose and then regain my hair, put on a bit of weight, have surgery and radiotherapy and that would be it. But my body is left very damaged from the treatment and I hadn’t expected that. Surgery, I knew, because I’m not a bloody idiot, would leave me looking different and that was surprisingly OK. Surgery itself was vile and I still have nightmares about the drain that got stuck and took 2 nurses and a lot of morphine to pull it out. The change in my body shape was OK, too. I’m not really a vain woman so it didn’t bother me too much. I didn’t understand how the treatment would delay healing so much and how damaging and invasive radiotherapy would be. I guess you could say I had a pretty bad time last year and, don’t get me wrong, this year is going to be way better but it’s also not going to be the same as I expected. I suppose that’s true for everyone, though. Life isn’t always what you expect and has ways of tripping you up and surprising you for the better or worse, in equal measure.

So I sit here with my compression sleeve doing its own thing and I wonder if there is a kitchen implement I could use to settle the top. A spatula? Tongs? I could stop a passer by and ask. Or I could develop another 4 arms and do it myself. Sigh. Where IS Spiderman when you need him?

Walking the high wire

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Life is supposed to be getting back to normal. Diaries are co-ordinated, appointments are made, meetings are set up. It’s then that the rot sets in. The delicate balancing act of pushing boundaries and challenging myself whilst allowing myself enough down time to do all the recovery I’m supposed to be doing leaves me feeling dizzy and breathless. When I make arrangements, I don’t know how I’ll feel on the day but I have to go ahead and arrange them anyway, on the off-chance. Sometimes putting one foot in front of the other is too complicated. Tomorrow is a refresher course for sitting as a magistrate and I’ve been looking forward to it. Until this evening. The reality of what it entails hits me. A whole day, starting early, rush hour tube, concentrating, asking questions, not forgetting words, being polite and sociable with strangers – it’s all very hard work. A whole day is also a lot to ask at the moment. And a day of concentrating is a very big ask. So I’ve made the decision to shelve it for the time being. I can’t sit in court and not do the people in front of me the courtesy of being up to date with the latest guidelines and able to concentrate on their cases.

While we were in the kitchen this morning, I heard a dull thud on the kitchen window and saw something out of the corner of my eye. I went outside and found a very small finch that had flown into the window. I didn’t realise they were that clean! It was obviously stunned and sat there with its head flapping about but seemed otherwise OK. It opened its beak a few times and its parents seemed to be about so we took that as a good sign. Keeping Cat no 1 inside, Mark went to pick it up and it fluttered around and then flew up to perch on a wire hanging down from the house. It was so very, very tiny. We have put fat balls in the garden to feed the birds but the pesky squirrels keep chewing through the twine and (presumably) running off with them. I would actually quite like to see that. Or are they eating them under Dog’s watchful eye? If I see any pot-bellied squirrels around I will know where they have been.

Saturday saw a girly lunch date with my friend E. Like me, she has a colourful family life and we spent time talking about the madness of parents and laughing at her Dad’s antics. After lunch, during which we eavesdropped shamelessly on the other people around us, we went to M&S where she tried on a selection of ludicrous shoes. Complete with navy blue wool socks, she tottered around on 4″ heels and complained about her bunion which she insists is hereditary. I was forbidden to try hats on. She lives in fear that I will arrive one day in a knitted monkey hat. The fact that I don’t own one (but yearn for one) doesn’t come into it. She is very strict. Over a cake at Patisserie Valerie, she was shocked to find I had always thought her a total control freak. She is. The fact that she has only just arrived at that conclusion is hilarious. Anyone who can instill such fear into a partner that he blames a dent in the flooring on the cleaner instead of owning up to it has got to be quite scary. But she is also funny and very kind, so we get along really well. And she can also do an ace impression of Mrs Overall.

So one tiring week leaches into another. Four hospital appointments in one week drain my energy reserves but there are fewer this coming week and anyway, they’re all supposed to help me feel better. Fran is coming to stay for the week which will be brilliant and I am really looking forward to it. It’s also Ollie’s birthday and we will all be together for that. But the other thing I am really looking forward to this week is singing at Maggie’s. I’ve seen some of the women since last week and know that this week is going to be even more entertaining. Yes, here comes the sun!

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Here comes the sun

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I am becoming new and improved every day. Every day, in every way I am getting better and better. Or something. Today was the acquisition of the much awaited compression sleeve and gauntlet. Mine is a snazzy all-in-one, caramel in colour, naturally, and very tight. It runs the entire length of my arm, from just beneath my arm pit stopping around the knuckles on my left hand. Hand-washing is very difficult. If I ‘get on with’ this one, I can have another one. I can wash it gently but mustn’t leave it to dry on a radiator. After it was fitted, I whipped my tattoo sleeve out of i’s bag and began to put it on. The man who was helping me – I don’t know his exact title – was surprised. “I’ve never seen one of those before” he said. I explained I didn’t want to be controlled by my sleeve but meant to have some fun with it as I have to wear it. He nodded approvingly.

This afternoon was the formation of the new singing group at Maggie’s. It’s only for 4 weeks but I thought it would be fun. An amazing amount of people I had never seen before came and we sat in an awkward L-shaped room while a very nice man put us through our paces. We did breathing exercises, panting. yawning, tapping and clapping. Eventually we separated ourselves into groups – soprano, alto, tenor and men. Our choir master has decided we should sing ‘Here Comes the Sun’ which is fine by me. The problem is, some ladies in the group can’t understand that you should only sing your own part, not the part of every group. It leads to endless confusion when, say, the tenors are singing their part and women from the soprano and alto sections are singing along. I clearly need to be more tolerant and possibly buy some earplugs.

Waiting in the car park for Mark to arrive, a woman I have never met before accosts me. ‘Wasn’t it fun?’ she asks. We discuss what we liked about the afternoon. ‘As soon I saw you come in, I thought “she’ll be a right laugh”‘ she tells me. ‘You came in with your tattoo, chatting with people and I thought you looked amazing’. How fascinating to see onesself through the eyes of others. We discuss our various cancers. Her tumour was 11mm and she had had it removed. She is due to start chemotherapy on Friday. I tell her I had chemotherapy before surgery. ‘Was that to shrink it?’ she asks. I tell her yes. ‘Did it work?’. I tell her it shrunk to 8cm. She looks aghast. ‘8cm? Mine was only 11mm!’ I remind her it’s not competetive cancer. Cancer is cancer is cancer. She tells me her chemotherapy is made from the bark of a tree. With horrible familiarity I know exactly which drug she will be having and, skipping the horrible side-effects, I tell her it will stop her cancer in its tracks. Mark arrives and we part.

Coming home I get to remove my external accoutrements. My prosthesis, my new compression sleeve. The relief of discarding the improvements is immense. The joy of sitting in pyjamas mis-shapen and puffy-armed is huge. I don’t yearn to go to restaurants, clubs, gigs, the cinema or have dinner with friends. I long for the sofa at the end of the day, pyjamas and sheepskin slippers.

Wailing not whaling

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It’s been a funny old day. Today is the day I got my permanent prosthesis and I had a bit of a wobble getting dressed, putting in the old prosthesis (I called her Wanda on the basis that she used to) and seeing that nothing looked the same as me. I was hit by a wail – I’m so glad I can spell. Under clothes no doubt it’s all much of a muchness but when I bend forward it looks all wrong. Having a couple of useless post-surgery bra fittings hadn’t helped and I don’t feel terribly confident in what I’ve ended up buying. But I digress.

Mark dropped me off at the station and I even got a seat on the tube.  Hammersmith station is a nightmare with people selling stuff and chuggers and I got caught with the latter today. It was the British Red Cross and they really should train their team to have at least the basic people skills. You know how it goes. One of them catches your eye (which is usually being drawn by anything other than the chugger) and then you are fair game. A tall young man made a bee-line for me. ‘Got 10 minutes?’ he asked, a little optimistically, I thought. ‘I’m going for a cancer appointment at the hospital’ I said. ‘You can postpone that for 10 minutes!’ he said. If I didn’t look puzzled, I certainly felt it. ‘Did you hear what I said?’ I asked. ‘No’. ‘I’m going to the hospital for an appointment about my cancer’. I didn’t think he needed to know the exactly what I was going for. ‘Yeah, you can postpone that for 10 minutes!’ he said, grinning inanely. I replied politely that this was not going to happen. ‘I’ll catch you on the way back, then’, he said, still gamely pushing his luck. It struck me then that this young man has clearly never been close to someone who has had cancer. It also struck me that, although he wasn’t a teenager, I’ll be generous and say he was young, he clearly hadn’t much imagination or sense, either. As I walked on, shaking my head, I entertained myself with the exchange we might have on my way back.

My new prosthesis was fitted and sorted in about ten minutes. Made of silicone and, of course, caramel in colour, it fits nicely and weighs more than Wanda so shouldn’t be appearing near my left ear any time soon. I have to treat it as I would my own skin and might be able to have a different one for swimming. The prosthesis lady will ask.

I then had to see my GP to get a whole host of drugs and a new medical certificate. I was peturbed to see she was wearing a normal striped work shirt beneath a black, off-the-shoulder gypsy top. I wanted to say ‘You’re a young, attractive woman! Have you dressed yourself in the first things you laid your hands on this morning?’. This is also the preferred method of dressing by Mark who will see nothing wrong in this approach. On the grounds that I don’t belong to the fashion police, I kept quiet. She listened to my chest and prescribed antibiotics for my cough. Mark was waiting to see what she said about my cough before he bothered to go about his own. It’s sort of remote healthcare. I am now signed off for a further 4 months which sounds a long time in some respects but just about right in others. I feel it will be a long, slow slide back into work rather than a spectacular being-shot-out-of-a-cannon kind of return.

So tomorrow is the long-awaited sleeve and gauntlet fitting. Photos may follow….

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The bone graveyard

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I am struggling. Is it OK to admit that? I’m finding it tough? Letting the android/cyborg/superhero mask slip a little is both scary and a relief. Having a chest infection has sent me back to the sofa to watch trash on tv and play Candycrush (thanks to SR for leading me down that Primrose path :-)) It’s also given me huge anxiety about all the things I’m not doing and… oh, it’s the ‘shoulds’ and ‘oughts’ making a re-appearance. I should be coping better. I ought to be doing more around the house. Tears spring from nowhere, apparently unprovoked, leaving me breathless and sobbing. What’s it all about?

As usual, the answer is bloody cancer. How dare it rear its ugly, monstrous head at a point when I think I’m getting back onto my feet? Cancer isn’t just the tumour, the disease at cellular level, the physical stuff. It’s also so much about the emotional stuff, the unprocessed, the primeval fear, I guess. To be faced with the possibility of dying is a real shock and it takes its time to work through the system, the system being taken up with breathing, walking, talking, sleeping (sometimes) and just getting on with the business of staying alive. Once the imminent threat is past there is time to think ‘What the hell was that?’

It feels so much better to admit I can’t do it all and that some days I feel like Marge Simpson, sent demented by her family and coming to a halt crossways on a bridge. When the police approach the car, she turns and does a great snarly roar at them which has them backing off fast. So yeah, back off, life! Give me a break and give me some space.

I still don’t want to sit and wallow, though, to allow the bastards to grind me down so I prescribed some light activity to help. Dog makes a lot of smeary mess on the window in anticipation, fear, delight, anger, concern and sheer curiosity so I decided to tackle those as I can see them from my sofa retreat. This means moving Dog’s bed and what a treasure trove I found underneath it. A shoe, many unfinished bone projects (he is currently working on a joint from a leg of mutton but this is quite a long term project), stolen cat toys, treats stored for another day – a cornucopia of doggy delights. He came back from his run to find his bed moved and his stash revealed. He was very brave as we removed the worst offenders, reunited the cats with their toys and the shoe with its partner, threw away the googly eyes he loves to remove from toys and hoovered beneath, no doubt ruining the aroma he has been carefully tending for weeks.

He takes life in his (very long) stride and has simply flopped to the floor to lie in the sun. Maybe I should take a leaf out of his book.

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The one where I get a tattoo

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This week sees me getting my very first compression sleeve for lymphodoema. Bloody lymphodoema as it’s known in our house. Fat hand. Fat head. Grrrr. With 22 lymph nodes removed, lymph fluid has nowhere proper to go. It kind of wafts about in my arm and hand, wondering idly if it should be going elsewhere or have an aim in life but meanwhile, it pools in the lower regions – my hand – and gathers in gangs in parts of my arms, waiting on metaphorical street corners to mug passing……somethings. I can’t think of anything lymph fluid would want to mug. But I digress. Lymphodoema is manageable but cannot be cured so I am getting a new sleeve and glove, more properly entitled a gauntlet, to try and control it. Now I shall be able to throw down the gauntlet with absolute authority as I will have one. It will take me about 20 minutes to remove it so I hope the person I wish to challenge will hang around while I wrestle it off.

I went for a fitting a couple of weeks ago and my arm was comprehensively measured. I was then offered a choice of colours – caramel or black. Oh, that one doesn’t come in black. Well, caramel it is, then. I assume this is to replicate skin colours. I don’t feel caramel. I don’t feel black, either, but I thought it would make a change. It’s not to be.

There is an alternative, though. There is a company who have realised we don’t all want to be caramel or black-armed and have come up with a range of tattoo sleeves to cover it. I could go for some heavy metal vibe but that’s not really me and the company I have found have come up with some lovely designs. I’m not really skulls, daggers and large-breasted women astride Harleys. The latter would be in rather poor taste, too. So I have ordered a couple of sleeves to pretend I have a tattooed arm instead of a fat arm.

Humour aside, it’s a bloody nuisance. I have to wear the gauntlet and sleeve all day, every day and remove them only at bedtime when I am due to rub a lot of moisturiser into my arm to keep it supple and reduce the likelihood of grazes, cuts etc. Every day. For ever. Sigh. Bloody cancer.

If anyone wants to know, the company is called My Tattoo Sleeves. I don’t know what they’re like yet but if I like them, I will post a photo.