Tag Archives: lymphoedema

Mr Mason and the Hitler moustache

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Some time ago, Richard Herring, the comedian, thought about reclaiming the toothbrush moustache. Obviously heavily identified with Adolf Hitler, it was a tough challenge and he received quite a lot of stick for even raising the subject. As I watched his efforts some years ago, little did I realise I would have my own toothbrush moustache kerfuffle to deal with. I am resting in bed before I head off to the hospital to have my arm wrapped in an effort to reduce the lymphoedema. It’s a long process that requires doing on a daily basis. Luckily it also involves a very soothing massage as the nurse moves lymph fluid around my body. She mentions that Mr Mason could help with massaging my back for when she is not around and I mention it to him later but he looks dubious. A look he quite often adopts these days. As Mr Mason finishes his ablutions in the bathroom, he wanders back into the bedroom with a piece of toilet roll pressed tightly to his face. In the olden days, it was not uncommon to see men wandering around with small pieces of toilet paper stuck to their faces from where they had cut themselves shaving. There seemed to be no embarrassment or sense that this was not the most stylish way of looking. I have to say that I haven’t noticed toilet paper stuck to men’s faces for ages. Presumably the rise of modern razors with their millions of blades has put paid to the need but today, Mr Mason is on a time warp, big style.

“I have cut myself shaving” he says. “I appear to have given myself a Hitler moustache”. Once he removes the toilet paper, I can see that he has, indeed, given himself a Hitler moustache of sorts. He appears to have sliced a chunk out of his upper lip and the resulting dried blood looks very much like a toothbrush moustache. We are very fortunate Mr Mason does not have dark brown hair or he would have to stay indoors.

Mr Mason offers to give me a lift to the hospital so I can get my arm bandaged. In order to lure me in, he says “I have a bag of cat litter and a pack of toilet rolls in the boot” with a slightly mad look on his face. He is such a smooth talker. In spite of my better judgement, I accept and my journey goes smoothly. As I am early for my appointment, I go into Maggie’s first and catch up with some friends. Firstly I announce to my friend Tamsin that Tamsin will not be able to meet us this morning. She gives me an old-fashioned look (how I love that phrase) and I realise I have confused her with my friend Tatum. This is the first in a litany of frustrating dead-ends in my verbal dexterity. My mind is like a complicated maze at the moment and I continually run headlong into the hedges, bouncing off as I grab at words that elude me. I have quite a long conversation about going to Bakersfield in California some years ago and explaining we had gone to see XXX XXX who had a hotel and club there. Who is XXX XXX? they ask. I cannot tell them but I can tell them a lot about our visit, including that he had a young protegee who is current in country music. Who is that? they ask. Ah, that I cannot tell them that either. We have seen him play, I tell them. Both of them. And XXX XXX was elderly and forgetful but could play guitar although his singing voice had deserted him. He died a little while after we saw him although the two things are unconnected. This is despite the fact I told Master Mason that XXX XXX only died after he saw him and that the two things were undoubtedly connected, he being possibly on a silent rampage, killing elderly musicians. Some of the Village People  died after he saw them at the age of 5. I am saddened to say that his very first gig was to see the Village People (who were great) and Gary Glitter who has since been exposed as a paedophile. Gary Glitter did not perform as he injured his back, probably by falling off his platform shoes or so we posited. This early exposure to entertainment and very dubious individuals does not seem to have affected him unduly although he would tell you he needs counselling, should you ask him.

In the end I save the day by shouting out “Buck Owens!” for it is indeed he who is XXX XXX. My memory is definitely getting worse. Having expected improvement, I am rather depressed by its decline and don’t know how I can rescue it. Chemotherapy has torn a large, ragged hole and is holding my memories hostage. If anyone sees them, please let me know.

New Year blues

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I’m feeling a bit coldy. You know how it goes. My nose is tickly, my throat feels a bit tickly and I am sure by tomorrow I will be streaming with cold, despite the number of blood oranges I have been consuming. Having ordered 5kg of blood oranges with our weekly organic vegetable box, I feel I must be awash with vitamin C which should ward off all kinds of horrible cold viruses. I suppose it’s common to feel a bit under the weather in January. Classic New Year blues.

Last week was quite busy at home and at play. Mr Mason and I are turning the house upside down, ferreting out clothes, books and dvds we no longer want and boxing them up to get rid of. It feels quite therapeutic but is also a bit tiring, even though there are great memories surfacing along with the dross. Miss Mason, when she was less than 3, drew a wonderful octopus which had an enormous number of arms and took up a whole sheet of A4. In the corner, she drew a very small Humpty Dumpty and, so proud was I of my gorgeous girl’s artistic endeavour that I put it in a frame. Thinking she would be pleased, I showed her the framed drawing whereupon she embarked on a ferocious tantrum complete with vomiting and passing out. Miss Mason was very good at throwing a tantrum which I am pleased to say she has grown out of. The experts were obviously correct in advising us to ignore them.

I visit the Maggie Centre on a regular basis to meet the others in the Young Women’s group (please don’t laugh) so Wednesday was taken up with that and a long natter with my friend Ms Marsden. I also have a new compression sleeve to collect from the lymphoedema nurse as the others are making my arm quite sore in the crook of my elbow. My journey home takes place in the school rush hour and, walking through Hammersmith station, I am nearly knocked over by a couple of small schoolgirls who, instead of clutching cans of soft drink, sweets or crisps bought on the way home from school, are carrying takeaway cups of coffee. They look about 12 and are high on caffeine instead of sugar. Ah, how the times change!

On Thursday, I do what feels like a million errands. And I am not exaggerating. Honest. I go to Maggie’s to meet a research nurse from Guy’s Hospital who I am working with on a project to develop a device which will detect cancer cells during breast surgery. We discuss the project which is applying for further funding and then discuss trials involving lymphoedema patients which sound really interesting. My next port of call is back to Jeanne, the lymphoedema nurse to collect my new sleeves which were not available the previous day. They are black and softer than before so I have high hopes. I really like both the lymphoedema nurses. They are so warm and human which, possibly surprisingly, is quite rare in the cancer world. There has to be an element of self-protection for people working with patients who possibly have a terminal illness but I suppose the lymphoedema duo are working with those who have survived long enough to develop the condition and so can relax a bit. They are both delightful and scatty and very, very helpful. The next stop is the breast clinic. I have discovered some red marks on the side I had my mastectomy which look like tiny burst veins but, cancer being cancer, they need checking out by someone who knows what secondary cancer looks like. My friend, Ms Cantini, something of an expert herself gives advice via text but I still have to go and see the breast care nurse who, happily, can see me after her ward round. I show her the offending marks and she agrees, they are burst veins probably caused by radiotherapy and that she saw someone with even better burst veins recently but that this is the quite unusual. It’s a relief, I won’t deny. She also throws in an appointment with the lady who provides prosthetic breasts as she also thinks my current prosthesis isn’t really working. If I had the time and energy, I would write a whole blog on the hopelessness of post-surgery bras. The idea that they fit and allow you to look just as you did before someone took a scalpel to you is, quite frankly, bollocks. Perhaps prosthetic bollocks would look better. Who knows?

On the way home, I walk back from the tube station as I need to collect a prescription from the GP. Of course, it is not correct so I ask the receptionist if she can get the GP on duty to change it. This she does. It is still wrong and I cannot summon the energy to ask her to change it again. Sigh. But I do see something which disturbs me. Outside the local supermarket, a small-ish dog has been tied up and is waiting patiently for its owner. I pause to speak to it and then see its claws are painted bright red. No wonder it’s whining. I don’t think I have enough varnish to paint Dog’s nails and I’m pretty sure Mr Mason would have something to say should I attempt such a feat. But Dog is busy sporting his new snood, knitted by yours truly and ensuring he stays warm and cosy by day and night. I have taken photographic evidence of the latest in Dog couture but, as an appetite whetter, I am going to give you Master Mason in antlers. Those of you who know Master Mason, including Ms Atherton, will be surprised he acquiesced so readily on Christmas Day but he wore antlers for a good hour or so and here is the evidence.

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Merry 2014!

The one where Karma gets me

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Today I go for a meeting at the Health Research Authority to look at ethics in health research with a group of other patients/people/non-professional researchers. I am a patient, I am a person and I am a non-professional researcher in that I am a co-applicant on several research applications. I cannot remember how many but that’s chemo-brain for you. Anyway, I have agreed to sit on a panel to read papers on ethics and give my perspective. Stuff like Incidental Findings – where researchers find out more about you than they expected eg when you have a scan as part of a research trial. The detail that goes into the trial design is incredible, as it should be.

I arrive at the venue which is surprisingly swish and hi-tech behind it’s rather drab exterior and immediately think of my friend, Claire, who I know is doing something senior in the NHS so I text her to ask if she works in the building. She sends one back, confirming she does. Is she free for lunch? She’s out of the building all day. Booo. We’ve been trying to arrange a lunch for ages. Still, there is always next year. I go to the meeting room and immediately someone says “I know you!” and reminds me of a workshop I ran with colleagues that she attended. More than that, a man arrives who was also at the workshop. There are only 2 others attending and one of them knows several people I know and the other woman discovers she is sitting on a committee with the woman who recognised me when I arrived. It’s making the world very small. On the tube home, we sit and discuss this very topic when, lo and behold! A friend I haven’t seen since I was first ill gets on the train and we exclaim and hug and then spend the next few minutes catching up. It’s an extraordinary day.

The following day I meet up for a coffee with my lovely Italian friend who tells me that her recent brain scan had an incidental finding of lesions in her brain. Bloody cancer. Never happy with what it’s taking it always wants more. Her lesions can hopefully be zapped with a cyber knife but it’s still a terrible blow. And another bit of synchronicity given I was talking about incidental findings just the day before.

Yesterday I have an accident. I am not sure how to describe it without causing dreadful offence to anyone who reads the blog but feel it should be told. Bear in mind that Mr Mason and I are liberals with marked socialist leanings but that we occasionally like to break out and do really silly things. So. We are making gingerbread and biscotti to give to our friends on Saturday night. I leave Mr Mason to continue the baking while I go to have a shower. When I come down, Mr Mason says something along the lines that he has been trying to create a gingerbread Hitler but it didn’t go well. He was struggling with shaping the holocaust author. Mr Mason then has to go to the supermarket to buy things and, while he is gone, I think I will surprise him by adding gel colouring to the gingerbread men, making them look like the Fuhrer so it will amuse him and we can have fun biting his head off. I busy myself with creating tiny toothbrush moustaches and giving the gingerbread men big smiles. I then have to put the biscotti and the non-Nazi gingerbread men into cellophane bags so I can add ribbon to them. I add ribbon to 2 packs and curl it beautifully. I think I will use a different colour ribbon to the other packs and reach down to pick up the ribbon which is on the floor. At this point, I should explain we have chairs in our house which are over 100 years old and, it is at this point, despite many remarks to Mr Mason about glueing the joints of the chairs, that my chair decides it has had enough and there is a loud cracking sound as I am tipped back swiftly, my head banging hard on the edge of a wooden CD rack behind me and leaving me stunned and thoroughly roughed-up on the floor.

After I pick myself up, somewhat carefully as a lot of me hurts, including my left lymphoedema arm, I phone Mr Mason to advise that he should come home early but his phone goes straight to answerphone. I then have a choice of offspring – Master Mason who is only a few miles away, or Miss Mason who is many thousands of miles away. It’s an obvious choice. I call Miss Mason and tell her I have had an accident and although it one of her most favourite kinds – someone falling over or being deposited on the floor – she does not laugh but is concerned and kindly. I have a huge lump on the back of my head which hurts – a lot. Master Mason would just have told me off for being so foolish and toppling myself onto the floor.

I feel it is probably karma. Obviously making gingerbread men resembling Hitler is a bad thing and in incredibly bad taste so Life intervened and threw me to the floor in protest. In my defence, I would like to say it was Mr Mason who started it. OK, I took it further but honest, guv, I didn’t mean it. And he should have glued the joints on the chair AGES ago. And now I’ll stop digging. Sorry.

Cat and mouse

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What a different week this one is turning out to be. Last week was relaxation, mooching and evenings in front of a log-burning stove in the total peace and quiet of the country. This week is hospitals and hours on the phone to the Department of Work and Pensions. Over the weekend, I find a new swelling on my chest. It is not a hard lump but it wasn’t there before and so I know I need to get it investigated. After a visit to Holly, my fabulous psychologist, I trundle off to Charing Cross to see if I can find my breast care nurse. I leave a phone message on the way. They never answer the phone, in my experience, so I am never sure they receive the messages I leave. After a cup of coffee and a couple of hugs in Maggie’s, I go to the Breast Care Department. There is another department nearby which is called ‘Breast Investigations’ but I have no idea what they do. Surely all the investigations are done in the Breast Care Department? Anyway, I ask if Vanessa, my nurse, is around. No, she isn’t. She’s on ward rounds. I explain to the receptionist why I want to see her or, failing Vanessa, will risk seeing any of the other nurses, including the one I fired for total incompetence and lack of empathy. There is no-one available and she bleeps Vanessa who says she cannot see me today but I could come back tomorrow and she will see me in clinic. I cannot face the thought of adding another trek so decline as I know I will be seeing the lymphoedema nurses on Wednesday.

I go to the oncology clinic to see if I can find a lymphoedema nurse and I am in luck! I find Jeanne sitting in her office, writing notes and she kindly agrees to examine me. She looks at the swelling which, she proclaims, is in a line and very pronounced but, prodding and poking a bit, she agrees it is fluid and asks if I have been overdoing it, carrying or lifting heavy things. I don’t think I have but I tell her I have had a throat infection and she thinks that is the cause. Apparently, even if I have an infection in my big toe, it can and will still affect the lymphoedema, simply because there are fewer lymph nodes hanging around to deal with those pesky infections. It can also turn into cellulitis which I know is serious but I’m not sure what it is and don’t intend to google it. Such a relief to find out the swelling is nothing to worry about and just means more massage. It does throw into stark relief, however, that any lump, bump or something out of the ordinary means it needs investigation now and what a pain that is. And please don’t mistake this for paranoia as this is now just a sensible precaution. Life can never be the same as it was BC (before cancer).

The psychotic cat does not want me to blog. She does not want me to use my laptop or put anything on my lap which prevents it being available for her use at any time she chooses. She sits on the arm of the sofa, smugly obscuring the mouse by keeping it warm and trying to control my destiny. She may be right. On the website of the Guardian today a photograph of  me and Mr Mason is shown in an article about sex after a diagnosis of cancer but we are only shown coyly from the shoulders down. Tastefully done, my floral shirt is recognised by one of my friends who sends me a text to alert me to it. Perhaps this is the sort of bad behaviour the psychotic cat is trying to deter me from.

Plans aborted – situation normal

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As we all know, planning is a sure fire way for things to go awry and this week is no exception. We have invitations for dinner with friends on Friday and Saturday. They are offering to come and collect us and then cook us delicious food, give us wine and generally allow us to relax and enjoy their company. Alas, life takes over. We receive a phone call from one of Mr Mason’s parents’ neighbours and he says Mr Mason Snr has been taken to hospital in an ambulance having collapsed in the garden. Mrs Mason Snr confirms this although she rarely talks on the phone. Mrs Mason Snr has not left the house in approximately 3 years since Mr Mason Snr collapsed similarly.

The first thing we do is grab phones, a change of clothing and toiletries, Dog and his comestibles and make ready to leave. It is about 3pm when we depart and the traffic is fairly light. On arrival, the kind neighbour leaves and we try and pick over the detail of what has actually happened. There is not much information. Mrs Mason Snr makes strenuous attempts to find reasons she cannot come to the hospital with us. She cannot find shoes, she cannot find a coat, her socks are too thick and finally she cannot find keys. This is the biggest issue as Mr Mason Snr has keys on him but, if we leave, we may not be able to get back in. Finally, they are found. Mr Mason Jnr brings the car back down the drive and I help his mother shuffle to the car. She is bemused, confused and frightened. She gets into the car and cannot shut the door, do her seatbelt up or think straight. We are on hand to help. Arriving at the hospital, I circumvent the reception at the Emergency Department by asking a Doctor where Emergency Majors is. This is where he is being held treated. We find him in a cubicle and, as luck would have it, the Doctor is with him. She treats him with great dignity and respect as he recounts what happened. He felt a tightness in his chest and difficulty breathing but he felt dizzy, too. The tightness in the chest went but he felt dizzy for a long time and was sick in the ambulance on the way to the hospital. The Doctor says she wants to do more tests on his heart ‘just in case’.

Mr Mason Snr is keen to tell us about his ambulance ride. He feels it is one of the worst drives he has ever had and he felt more comfortable in an armoured vehicle. When he was sick, the paramedic asked him if it was her driving that had done it. Clearly they had had a good rapport with their patient. A nurse comes to do another trace of his heart and we take keys from him, including his car keys which, given he hasn’t driven for months, seems an odd thing to keep in the pocket. I suspect it is habit. As we wait for the next stage in his treatment, a patient is brought into the next cubicle and clearly is suffering from some kind of dementia as she repeats over and over “Is it on time? Is it on time?” The staff try to reassure her but she suddenly shouts “I want to go to bed!” before going back to her previous repetitions. On being examined, she shouts out again “He’s hurting me!” and sounds so upset and frightened but there are lots of murmurings and apologies from the staff tending to her.

Mr Mason Snr is quickly moved into another ward where he can have a proper bed and within seconds, a nurse arrives with food (and a choice of 3 desserts!) and asks if he would like a cup of tea. Aside, she asks if he can manage a proper cup. The tea arrives in a mug and the man opposite begins to complain loudly that he wanted a mug but they gave him a small cup and it’s not fair! He spends the rest of the time we are at the hospital glaring at us and making harrumphing noises. As Mr Mason Snr bites into his sandwich, I take a photograph and email it to Miss and Master Mason so they won’t be too alarmed. At 7pm we leave and try to exit the hospital. Easier than it sounds. Apparently, once through the doors it is impossible to exit through the same doors and means we have to circumnavigate the corridors with me supporting Mrs Mason Snr who is clearly having trouble assimilating all that she sees and hears after 3 years indoors. She shuffles along, grasping my arm and, not having thought it through, I have given her my lymphoedema arm which is gripped soundly causing not a little pain. I pass her over to Mr Mason and he strides along with her tripping along in his wake. I keep saying “Hold onto your mother!” as though she may escape our clutches but really to stop her falling headlong and ending up in casualty.

Eventually we find our way out of the hospital and back to the car. They are going to check Mr Mason Snr’s blood in the middle of the night to see if there is any unusual activity so we decide to stay the night as we can’t leave Mrs Mason Jnr alone in the house. All plans aborted for now.

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The Jelly Baby

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Our hotel in Theologos, Rhodes is great. It is small, in the midst of olive groves and fields, a short walk to the beach and has a very mixed international crowd. Our first morning is the one where I discover I have definitely still got chemo brain. The adaptor we bought is not for Europe but for the US. (When I get home and put our passports away, I find a perfectly good Europe adaptor sitting snugly in the same drawer). I have forgotten to bring beach towels. My much-loved Fitflops decide this is a good moment to break and, having only brought a pair of trainers with me, I am without sandals in a country where the weather is touching 30 degrees. Not a good start. Our hotel has a tiny shop, though, where we can buy an adaptor and beach towels – Spiderman for me, butterflies for Mr Mason. We are partially sorted.

Watching our fellow travellers is always a joy. We have a large group of ladies from Liverpool. Ladies of a certain age – probably in their late 40’s but acting like they are in their 20’s. They are the first to crack and ask me about my lymphoedema sleeve and glove. The least raucous lady touches me on my shoulder at breakfast and says “Are you English?” I confirm I am and she asks about the sleeve. “We thought it might be something to do with the sun and we’ve been saying ‘Look at that poor girl'” she says with a ‘poor you’ face on. I explain what it’s about and she latches onto the word ‘cancer’ and I think that is all she hears. After that, the Liverpudlians give me a ‘poor you’ face every time we meet which gets a bit wearing. At karaoke night (we stay up late because we think it will be like a slow car crash to watch) they are enthusiastic in their singing which gets more and more out of control in time with the amount of alcohol they are drinking. By the time they come to their last song – Perfect – some of them forget to face the screen and one turns to the audience to shout “I don’t know what this is. How does it go? Where are the words?” A very unlikely singer is the retired man with a moustache who gets up early to sing ‘The Wonder of You’ to his wife. Very cute. We also have a man who seems like an X-Factor reject but he likes himself a lot, probably more than the audience does. He pronounces loudly on what he thinks all week.

As we sort through the other guests, matching up who goes with who, we are left with an odd one out. There is, and I’m sorry to say this, a Fat Ugly Kid. I suspect every hotel has one of these and that there may be an agency churning them out at vast profit. At each meal, we see him eat nothing. No breakfast, no lunch and no dinner. Except when there is jelly for dessert when he has several helpings. The only thing we see him eat are crisps from a huge bag. We wonder who he is with. Sometimes he sits in the restaurant alone with a bread roll in front of him which, obviously, he doesn’t eat. No-one seems to be with him and he sits with different people at other meals. We are confused. Eventually Fat Ugly Kid goes home and we watch him board the coach with an assortment of other guests but we still can’t make out who is his mother/aunt/grandmother. It’s quite sad as he doesn’t appear to have had any affection shown to him or been played with. Fat Ugly Kid lives on jelly and crisps.

Other guests are Russian, Dutch, French, Italian and German. Complaining loudly over his beer one night, a man from Nottingham says he doesn’t like the foreign people. He says the hotel is swamped by Russian mafia. Mr Mason gives me a sly glance. “If they are Russian mafia”, he says, “they are not doing very well.” He also knows I look like a Russian mafia hit woman in my passport photo. I am sure some of the Dutch people are swingers. They are very friendly and, of course, speak perfect English but I am sure they are swapping their hotel room keys at night. OK, this is all just pure nonsense but it entertains me.

We decide to get the bus into Rhodes Town to remedy the sandal disaster. Getting the bus there is easy as it pulls into the hotel car park at 9.30 every morning. We wander around the old part of the town which is beautiful and stumble upon a shop that sells exactly what I need. No more Fitflops but a leather pair of sandals which fit and feel comfortable from the outset. This is perfect. There are plenty of cats there who are friendly and who we pet, only to discover later we have been bitten by fleas. Getting bitten by anything on the arm I have lymphoedema in is a big no-no but I restrain myself from scratching and they don’t become infected. I have antibiotics at the ready just in case. Getting back from Rhodes Town is entertaining. We ask at the bus station kiosk what number the bus to Theologos is. “I don’t know” says the woman, smiling. “It will be here at 4.30.” So we wait and discover that the buses don’t seem to have numbers but the staff shout loudly all the destinations to the waiting hordes. Boarding the bus is like being at the forefront of a tidal wave as we are swept on board by a cohort of elderly Greek women in black. Once seated though, the trip is lovely and goes by the coastal road giving us a very pretty view. We see there are bus stops only on one side of the road and wonder how we can catch a bus going the other way. We want to go to Kameiros and are told the bus stops at the petrol station. At the petrol station, with no stop in sight, we ask where it might be. Fifty metres down the road, we are told. We walk fifty metres and still can find no bus stop. We ask in a shop. Outside the Lemon Tree, we are told. Still no bus stop but we duly loiter outside the Lemon Tree until we see a bus hurtling down the road. We just wave our arms and he stops for us which we think is miraculous and that the system obviously works. The bus driver drops people off at seemingly random places and when we return from a trip out, the bus drivers always drop us off at the end of the road to our hotel instead of the prominent bus stop 100 metres back. It seems a very community-based system and we like it, despite having no real idea of where to catch a bus going West. It reminds me a little of travelling through the Sinai desert several years ago. Periodically we would see proper pavements and at one or two, there were bus stops. The pavement would disappear after a few metres and we couldn’t work out why they were there in the first place. We saw a man standing on the pavement at one place as though he was waiting for a bus in the middle of a vast desert in searing heat. It looked so wrong when the most popular form of transport was camel and the only other pedestrians we saw were sitting in the shade of the occasional tree. Perhaps he was hitching a ride on a camel. Can you hitch hike a camel? Answers on a postcard, please.

Sleep, where art thou?

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Sleep, where art thou? In my eyes, for sure. The lids that want to close, close, close. The eyes that blur and ache. You are not in my bed, not on the expensive memory foam mattress with additional box springs for extra comfort. You are not on the Egyptian cotton sheets, so soft and inviting. You are not beneath the summer-weight duck down duvet, so light yet cosy. You are not on the duck down pillows, so soft and yeidling to a tired head. You are not to be found on the firmer mattress of Master Mason’s bed, nor beneath an all-seasons duvet with a view of the night sky if I lie with my eyes open. But they want to close. My limbs hurt. The left side where I had surgery hurts. It hurts to lie on it as though it is bruised. My left arm has lymphoedema and aches, right down into my palm. My right arm is complaining, too, as it dragged a shopping trolley probably over-filled home yesterday as my left arm is banned from doing such things. Normally they would share the chores but the pulling, lifting and carrying is definitely right arm’s job these days.

Sleep is not in the first sleeping pill I take. It laughs in the face of my insomnia and sneers at my tossing and turning. An hour or so later I take another pill and retreat to Master Mason’s bed with my V-shaped pillow. I just want to SLEEP. Sometime in the night, Dog comes upstairs to do what he likes best – stand on Master Mason’s bed and look out of the window to see if any infringements are taking place. He is sometimes known as Police Community Support Officer Dog. He takes his protection duties very seriously. He jumps onto the bed, all 26kg of him and walks towards the head when he realises I am in the bed and he has just committed a major faux pas. He high-tails it out of there and runs downstairs, embarrassed and contrite.

Sleep eventually reveals itself around 3am. It teases for a little while then allows me to settle my tired body comfortably on my V-shaped pillow and gradually fall asleep. It prods me awake a couple of times after that but I go back to sleep.

Apparently sleeplessness is very common after treatment for cancer. At a time when the body and, more importantly perhaps, the mind needs to heal itself, sleeping well becomes the unattainable. I am not one for taking sleeping tablets unless strictly necessary. I do not want to rely on drugs unless I have to. When talking to my GP a while ago about taking sleeping pills and the possibility of addiction she said, probably quite wisely, “At the moment that’s the least of your worries”.

So tonight, what do I do? Climb in confidently and wait to slip into a gentle sleep or take drugs beforehand? I don’t want sleeping to become a battleground. I need 9 hours a night and always have done so at the moment I’m feeling seriously sleep deprived. On nights I sleep well, I tend to continue well on into the following day which I don’t like. Time is precious. Conscious time, as well as sleep time.

I guess this is a battle which will go on for a while yet. And if anyone mentions the phrase ‘sleep hygiene’, I will name and shame you. Don’t get me started.

Dragons and Dog Shows

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This weekend has been the hottest so far in London so we decide an outdoor programme is required. We decide to stick with our plan to go Dragon Boating on Saturday. I feel we are somewhat extreme as the first time we went it was snowing and someone was taken off the boat with hypothermia and had to go in an ambulance. On Saturday it is boiling hot even before we start. I feel lazy and let other people get the boat out and then we’re in it and away we go. Ciara, our captain, works us very hard and we’re paddling away, doing exercises to improve our twist, working our legs and bottoms and making sure our start positions are right. Out on the water is slightly cooler with a bit of a breeze but every University rowing team also seems to be out there, sweating it out, most of them impossibly slim and tanned. After an hour, I am done. The boat goes into the pontoon and people swap sides and places in the boat. I say I will sit the next session out but Ciara asks if I want to sit in the back of the boat and just have a ride which sounds lovely so I accept. It’s great to sit back and watch people work and the planes taking off and landing at City Airport which is right beside the dock. Raging Dragons are also out on the water so it is decided we will race at the end. We are given a head start which is just as well as they are fast and pretty good but we paddle for our lives and I think we come in together. It’s fun, whatever. Walking away, my legs feel wobbly and I am tired but in a good way. Once we get home, we eat and sit down and an incredible feeling of calm and peace flows over me. I am in bed by 9pm.

Sunday morning dawns glorious again and we go to the South Bucks Pony Club dog show. The dog show is run by Greyhound Gap, a fabulous organisation who re-home greyhounds, lurchers and the like. There are so many dogs like Dog there, we are very happy. They have organised several competitions so we enter him for the Most Appealing Eyes, Handsomest Dog and Best Rescue. At the last moment we enter him in a lure race. They have a lure which is powered around the field for the dogs to chase. Although it is very hot, from a field away, Dog can see it and his attention is all on it. We go over and take him into the field. It is explained that the lure will go round once to excite Dog and then we can let him go and he will go like hell for leather around the field after it. Dog looks excited. The lure goes round once. He is let off the lead and immediately goes into clown routine, ambling around and saying hello to people and taking no interest in the lure whatsoever. It is very funny. In fact, it’s funny watching all the dogs whether they chase or not. They try to cut corners or else show no interest. It is very hot so we forgive Dog’s shortcomings in this department and realise again that this must be why he was dumped. He was bred by travellers for hare coursing, we think, and he shows not much interest for chasing rabbits although he has caught a couple. Now squirrels…that’s another matter.
After the shame of the lure, we go to the arena. Well, I say arena but it’s an area of the field roped off with a plastic gazebo to help give the dogs some shade. Dog enters his first class – Most Appealing Eyes – and gives the judge his best winsome look. We are delighted when he comes away with First place. Alas, it’s all downhill from there. Having won a first, Dog can’t be bothered to play the game and be the Handsomest Dog or Best Rescue although he scrapes Sixth place in the latter.

We wander off to find some food while the last classes are being judged and arrive back in time to see the penultimate class – Dog that looks most like its owner. There are only 2 entrants and we wish we had entered. Never have 2 people looked less like their dog but we know we would have been placed and then it would have been official. We have to be back for Best in Show which is very amusing. Dog has decided his best position is horizontal and he flops on the grass and can’t be bothered to show his best side. In 30 degrees, I don’t really blame him. He is not placed and so we wander off, proud of his small achievement and watch the show jumping for a while. Small children are racing round on ponies with such confidence and self assurance it takes my breath away. After a while we decide to leave and head home while there is still some afternoon to be snoozed away.

The weekend has been brilliant. I am tired but in a good way and hope for another good night’s sleep. I left my compression sleeve off today in a gesture of defiance (breast care nurse is still ignoring my request to see the lymphoedema nurse) and the heat has made my hand and arm swell so an evening of sitting quietly on the sofa watching a film is in order. This is probably the most active weekend I have had since my diagnosis. Maybe I am on the road to recovery after all.

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Pressing issues and unmatched arms

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Today I’ve done some ironing in the first time for nearly 18 months. It’s not that my clothes have been crinkled and shabby all this time (and I do wear a lot of cotton and linen just so you know I’m not ironing-obsessed) but I’ve not been up to doing it. It’s amazing how exhausted cancer treatment and fibromyalgia together can make you feel. So, I hear you cry – how did you manage? I managed thanks to 2 lovely friends who took all our ironing and delivered it back, fresh and beautifully folded. They tell me they like ironing which I find hard to get my head round. Apart from this, they also took me to hospital on several occasions as well as helping with moral and emotional support. And now, they are doing something even more amazing and I encourage you to follow them. Alan and his wife Lesley are doing the Adventurist’s Mongol Rally and through this, supporting Cool Earth and Street Invest. Alan starts his journey today with his friend Matt and they will complete the trip in 4 to 6 weeks. Lesley is flying out to join them in Russia in a couple of weeks so I hope they find they have the same sense of humour and enjoy the same taste in music as they only met Matt a few months ago. If you want to follow their blog, you can find them here. So it’s essential I am able to do my own ironing again as my ironing team hit the road in search of more good deeds. Maybe they will get to do some extreme ironing as they go.

As for me, I am pushing myself to do more activity. Tomorrow I will be back Dragon Boat racing for the first time since March. When I say racing, I really mean just paddling as we don’t normally have other boats to compare ourselves with. It’s a bit like Hawaii Five-O with much slower, older people. Again, it’s an amazingly generous act as people are donating their time in order to get us out on the water. In case I haven’t mentioned it before, Wave Walkers is a group of people affected by cancer and team members from Raging Dragons come along every other week to help us find newer and better levels of fitness and have fun. It’s not something I would ever have considered doing (have I said this before?) but the post-cancer space between active treatment and – well, whatever comes after that – seems an ideal time to indulge in some new activities. It also feels like a good way to try and get some energy and just put cancer to good use for a change. So tomorrow, bright and early, I’ll be up and off to Docklands with Mark, wondering if it’s the right thing to do as usual and knowing I’ll feel better as soon as I’m on the water. The only downside to this is that because of the lymphoedema, I have one pale arm and one brown arm. I am unsure how to rectify this. I will definitely need to wear the loathed compression sleeve to something as energetic as paddling but look forward to the day when my breast care nurse gets her finger out and books me an appointment with the lymphoedema nurse so I can learn how to manage the condition and not let it get any worse. In the meantime I will just have to look half pale and interesting. It’s a look.