Monthly Archives: June 2014

Being slightly stalked

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So I am now in hospital. It’s difficult to decide what to bring. How ill will I feel? Will I be able to wear my own pyjamas? Will I feel like getting dressed during the day? One thing I must not do is get bored. I have my phone, tablet and laptop, complete with external hard drive bursting full of entertainment. On the day, though, I am just so exhausted I barely look at anything. I am admitted at 9am and by 11am they have me whisked off to the treatment room where the drain is inserted with the aid of ultra-sound. And it’s nothing like the horrible, horrible drains I had post surgery so I am pleased about that. I have a little bag to carry around on a blue coat-hanger affair and I must not let it be higher than my chest.

At the first the fluid gushes out and quickly fills the litre or so bag. There are the usual fun and games with sticking plaster which still brings me up in painful blisters. Luckily I have one Mepilex dressing in my toilet bag so they use that, asking if I have any more at home. Within a few minutes, I am gripped by an intense pain in my shoulder and arm with a little pain in my chest. I have a passing wonder whether I am having a heart attack. The doctor comes back to see me to say my lung is flapping about and will cause this kind of pain for a while. I ask for painkillers and get Tramadol which does the job. Back on the ward, they see the bag is already full and change it. Various medics drift in and out of my awareness talking about pain and rates of drainage. Ms Marsden comes bearing gifts including a toilet roll with hearts on it and some cherries. The toilet roll I send home with Mr Mason but I eat the cherries during the evening. I get moved to a different ward and at some point during the evening it becomes clear Ms Cantini, desperate in her search for ‘going one better’ has had herself admitted and is in agonies with fluid around her heart. It’s outrageous and when my new breast care nurse comes to see me, I ask her to send a message saying “Stop stalking me” which she happily delivers.

The night passes slowly. It is hot and I am so tired I actually cannot sleep. One of the night nurses takes pity on me and gives me some sleeping tablets which work quickly. In the morning, while my bed is being made, I stroll down the corridor with my drainage bag, hoping people will not think it is wee, and find Ms Cantini with a nasal canula giving her oxygen. She admits her grand passion for me and explains about her pain and I forgive her. It is very hard to work out whether I may or may not be able to go home today. The nurse I asked gave an emphatic “No” but the consultant who has just wafted in in an “I’m important and don’t really speak to the patients” kind of air, seems to imply that if my drain is re-angled, I could go. I have no idea.

During the morning, I receive a call from Mrs O’Keeffe, who is the Deputy Justice’s Clerk at my local bench. I have made decisions about what work has to be ditched immediately and it is my beloved bench which is first. I was due to go back shortly and I am gutted not to be able to do this now. Mrs O’Keeffe is kindness itself and a very warm, human response to my email which was full of me gnashing my teeth over the whole situation. She agrees that once I am carefully maintained, she would be very happy to have me back and that’s exactly what I would like to do.

My eyes are closing even as I write and it’s obvious I need more sleep. I apologise for the lack of excitement in this blog. There are no strange people in the ward with me. 2 are Asian ladies, one who sings softly to herself quite a lot which is actually rather soothing and an elderly and very proper white lady who is reading Northern Lights. The only person scooting about in unsuitable clothes is me wearing a t-shirt and pyjama bottoms combo without a thought of the crimes against fashion being committed. Thank goodness there is no-one taking photos.

Hello, hello I’m back again…

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Perhaps it’s not the most tasteful of blog titles with it’s unsavoury connection to Gary Glitter but it just pops into my head today while we drive home from the hospital. As you might know from the Venice Chronicles, my breathing hasn’t been great and you possibly read of the trials of My Best Vein as well. Today is the turn of the oncologist. As usual, the clinic is running late so we sit and wait patiently, allowing the volunteer to bring Mr Mason cups of tea while he flicks through old copies of Heat! and Now! When a breast care nurse appears to take us to see not the registrar but the oncologist herself, my antennae are really twitching. When the first words are something akin to “Have you been informed about the treatment plan?” we know we are in deep waters. The CT scans shows that there are some nodules in my lung and the oncologist is surprised I am still feeling pain in my trachea when I eat toast or something scratchy. Even tablets feel as though they get stuck. She thinks perhaps a throat man should have a look. Anyway, the plan is to admit me to hospital and drain the fluid off my chest. I am feeling better than I did last week and think that perhaps the fluid has almost been reabsorbed. Off to x-ray with me then, in case there is nothing to drain. Mr Mason nips out to put yet more money in the ticket machine while I get x-rayed and then whizz up to the 5th floor to book an echocardiogram. The clerk is nice and manages to squeeze me in on Tuesday which means that chemotherapy can go ahead next week as planned. Back to clinic 8 to see the x-ray results which show there is double the amount of fluid in my lungs there was last week. This is puzzling as I feel so much better than I did last week. A final wait for blood to be taken and then we are free.

Taking in this big news is hard. We do not skip into the clinic thinking all will be sunshine and roses. Whatever the results of the CT scan, we know the fluid has to be drained off but this news is much, much bigger and has a nasty sting in the tail. Secondary cancer, for those of you who don’t know, can be managed but not cured. The treatment plan is for 6 to 8 doses of Herceptin, Perjeta and our old favourite, Docetaxel. If that dampens things down, I will go onto a maintenance dose of probably the first two drugs to keep things at bay. This throws lots of things into question. Moving, for one thing. It also means hair loss which, though relatively trivial, is just another thing to endure. So it’s back to painting nails a dark colour in an attempt to keep them, dealing with a runny nose as nasal hair is decimated and finding natty ways of tying scarves.

In an attempt to show bravado today, I go to the hospital wearing mascara and a pair of trousers with skull and crossbones on them. Obviously I have other clothes on too, but later on Mr Mason and I share a very dark joke about the inappropriateness of wearing such a garment to an appointment when you are told you have incurable cancer. So yes, the humour is alive and well and still flowing freely. We have been knocked by this news but tomorrow we’ll be up and fighting again. On the way home, we go to the supermarket and stock up on essentials like toilet paper and cake, the latter probably being more essential than the former at the moment. It’s clearly a time to hunker down and dig deep. Please feel free to insert your own favourite metaphor.

Normal service will be resumed shortly.

My Best Vein

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It seems like hardly any time since we were strolling across the canals of Venice but, of course, real life has a habit of crashing in. Not that the Vogalonga wasn’t real life – it was just an extraordinary slice of real life. So, we are not back more than a day before I am at the GP surgery asking the GP to listen to my chest. I feel breathless and it’s got worse since Venice. I have to say my GP practice is patchy when it comes to good service. On this occasion, a phone call late afternoon scores me a “come in at 6 and hang around” appointment which I am really grateful for. The doctor is one I haven’t seen for years and she’s very nice. She listens to my chest and tells me that one side is quieter which is apparently, not great. She orders a chest x-ray for me for the following day when I have an appointment for a bone scan anyway. By Thursday morning, I am feeling worse and ask Mr Mason to drive me to the hospital which, of course, he does. At this point I am having problems even holding a conversation and I have a pain in the middle of my upper back. I don’t have any problems locating the right department as I know pretty much where everything is. When I have had my x-ray, the radiographer says she will have to check with the consultant as to whether I can go home or not. What?? This I am not expecting and I really don’t want to be admitted. The doctor comes to speak to me and then speaks to the consultant and then comes back to say I can get on with my day but if I feel worse, I must come to A&E. I have the bone scan which I really dislike as the machine is so close to my face and, not being able to breathe properly, I already feel pretty claustrophobic. But then it’s all over, Mr Mason comes to pick me up and we go home.

The next morning Vanessa, my breast care nurse rings to find out how I am. I explain about the breathlessness (which she can hear) and the chest x-ray and the bone scan and she says she wants me to see the Oncologist the following Wednesday unless my breathing significantly improves. The consultant has also asked me to go to see the GP I saw last and get her to assess my breathing. I ask if I really need to do this and am told this is what the consultant recommends so I duly go to see the GP, this time accompanied by Mr Mason in case I don’t make it unscathed. The receptionist knows who I am as soon as I enter and tells me she has been on the phone trying to find the duty radiographer to get the results of my x-ray for the last 20 minutes without success. Eventually I get to see the GP whose office is at the top of a flight of stairs I negotiate slowly. She tells me the x-ray results have actually been sitting in her email but she hadn’t looked there. The main thing is, she has them now.

I have a pleural effusion which means there is fluid between the chest wall and my lung. Now, the thing about pleural effusions is that they are a common precursor to secondary breast cancer and that’s an area we really don’t want to go to. She listens to my chest and says it sounds similar to the last time she listened to it but to rest and rest some more over the weekend which I do. But it is very dull being the captive of the sofa.

On Wednesday I go to see the oncologist. There is a merry atmosphere in Clinic 8 (named so it won’t frighten the horses) as I find my friend Ms Cantini waiting for her oncologist and sporting a nifty 50’s style headscarf. We are later joined by Ms Marsden and Ms De Roeck who have come along to make sure neither of us is dead. I quite like the oncologist’s registrar. He looks like he would be useful on a rugby field. Anyhow, he listens to my chest and then looks down my throat using a special tool (the torch on his phone) and decides that on top of anything else, I have a fungal infection so there are more tablets to be taken and some medicine. The medicine the oncologist has prescribed is utterly vile. A mixture of vanilla and aniseed in a thick, viscous liquid. Yuck. He says that while we are in Clinic 8, the nurses will canulate me for my CT scan and take some blood at the same time. We can then go back after the CT scan to see what results he has got back.

My veins are a mess. It’s no point pretending anything different. They are crooked and spindly and have a propensity to sink and disappear whenever someone tries to mess with them. I have a trump card, though. It is my Best Vein and it lurks in the crook of my right elbow underneath a promising-looking but ultimately useless vein. In the room where they take blood, I point this out but first they want to try my hand. This is not working. As they feel around with the needle in my arm, I suddenly feel faint and they take the needle out and scrath their heads. I am a puzzle. My Best Vein is not working now. They have prodded and poked it so much it has gone hard and is refusing to play, added to which I am now sitting with my head between my knees and that weird “I am just about to faint” sound of voices coming and receding. They bundle me into a wheelchair and whizz me round to another room where I can lie on the bed as they try to get some blood. I have my hand plunged into a stream of hot water to make the veins stand out but this still doesn’t help. In the end they have the bright idea of asking one of the nurses from haematology to just take some blood so the nurses in the CT scanning department can canulate me. This is done and I am then on my way.

The CT scan does not take long at all. I hold my breath at the relevant moments and it’s all done. We find the stragglers from Clinic 8 are now in the cafeteria so Mr Mason and I join them so he can top up his blood sugar levels and I can have a drink. While we are there, something magical happens. When I was first diagnosed, I noticed a man working in the hospital who appeared to have knitted hair. Even in the depths of fear and anxiety, my gaze was drawn to this wonderful concoction perched on his head. Ms Mason tells me that when we were leaving the outpatients department after being Properly Diagnosed, she spotted the knitted-hair man (as I had obviously mentioned him to her as one bright spot in the otherwise gloomy news) but thought it a little undignified and a tad inappropriate to tug my sleeve and point him out. Since then I have not seen him although I always look when I go past outpatients. So it was marvellous indeed to see him sitting in the cafeteria where I was able to examine the hairdo in more detail. That, and try to take surreptitious photographs, of course. His hair seems to be rolled into two fat sausages which perch on the top of his head. The back of his hair looks quite normal. It is a welcome diversion from the day. I’m sure he is a very nice man but I find his hair utterly fascinating.

The blood test results are back, in part. It shows that my inflammatory markers are raised but this could be because I have a horrible infection so we are still none the wiser. On our way out of the hospital we spy Ms Cantini waiting for a taxi so we scoop her up, at the risk of her being blacklisted by the cab company, and drive her home, too. Apparently she has been entertaining the troops with impressions of she and I having a breathless conversation together. And apparently, it was a hoot.

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Venice, part III

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Vogalonga 2014 is a bright, sunny morning and promises to reach 29 degrees. We meet in the hotel lobby with those of the team who are staying in the Hotel with us. We are given bags of food by the hotel in lieu of breakfast. I suspect there will not be many people at breakfast as we have almost taken over the hotel. It is horribly early. We have to leave at 6.20 and walk the couple of kilometres to the boatyard where we will pick up our rented dragon boat. I am not feeling on top form. I have been feeling very tired and put it down to the heat but I am feeling particularly lacking in energy this morning. Everyone sets off at a spanking pace and I am soon trailing behind. Again, it is a twisty journey to get there and, as I don’t know where we are going, I need to keep up. Team mates realise I am left behind and wait for me but I can tell there is a lot of nervous energy around our group. When we round the corner to the boat yard, there are already teams waiting to collect their boats but we are so early, we have to wait for staff to arrive and unlock. Once inside, there is a flurry of people rushing to the toilets as they will be scarce along the route. After extra bags have been stowed away, we go outside to put on buoyancy aids and collect our paddles. The paddles are different weights to those we use but we can still use them. Lots of sunblock is applied, crotch straps tightened and then we are off to get on the boat, all clutching bags of food. Somewhat alarmingly, the pontoon is constructed of large, empty water bottles and walking along them seems extremely precarious. I am never the most sure-footed person but this looks precisely the recipe to topple me (as Master Mason calls it). I am not the only one feeling it as we creep along in single file. Then I see that in order to get into our boat, we have to climb across another. Hmmm. I know how incredibly easy it is to capsize a boat which, together with my ungainliness, makes for an uncomfortable few moments as I scramble across, aided by my lovely team members. I am paddling with Ms Marsden who has got in first. At this point we discover the boat is a different size to the one we use as when I sit down, it feels as though Ms Marsden is going to pop out like a cork. We agree to sit separately and on opposite sides to balance the boat.

And then we are off, paddling away across the lagoon and down a canal to take us down the Grand Canal to the start line at St Mark’s. The light at this time of the morning is exquisite and the air is relatively cool. I am told by our helm that I do not need to paddle if I don’t feel up to it. This is one of the things I like about our team. I always feel taken care of and that my health is always taken seriously. But mostly that my team mates care and want the best for me whilst encouraging me to push myself. I can tell that several people thought I would not be on that boat and, over the last day or so, people have been speaking to me telling me I will be on the boat and that they need me there. So, here I am on this glorious morning, paddling out into the lagoon and down a smaller canal into the Grand Canal and to the start at St Mark’s. I think there are over 2000 boats entered into the Vogalonga so it is inevitable there will be some traffic jams.

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Not only are we on time for the start of the event but we are slightly ahead and already moving well by the time we hear the cannon roar to signal the start. Did I mention we have to paddle 30km? In old money, this is 18 miles which is quite a distance and when we first thought of it, we puffed out our cheeks and drew our breath in sharply (not at the same time, obviously) because it seemed quite daunting. But here we are, on the water, paddling away with enough food to feed an army. There is good natured banter on the way round and our progress is pretty good. Before too long we are at the 10km mark and it is time for some people to nip out and have a wee.071 072

Unfortunately, we also run aground at this point and people have to get out, sinking into the soft mud as they help us re-float. Getting back in without capsizing the boat is tricky but it makes me laugh when someone calls the silt ‘Quicksand’ which actually makes people squawk in fear. Eventually we are all back in and it is when paddling across the lagoon that our first incident occurs. Suddenly, what I can only describe as a girlie shriek emits from the middle of the boat. I have been sitting with my eyes shut so it takes me a few seconds to realise what is happening. A fish has landed in the boat, whether by its own devices or whether it has been scooped up by one of the paddles. Two of our regular Raging Dragons paddlers, Redmunds and Mr Ling, both shriek like girls. They may deny it now but there is a lot of panic and squealing from the pair of them, even when it is pointed out it is just a fish. A sizeable one, Ms Key grabs it and throws it back over the side where it swims off, relieved to be away from all the fuss.

Further along, as we begin to hit clumps of boats – and there are all sorts – conversation becomes possible and Mrs Cheong randomly calls out “Sexy!” and “Sexy man!” to different groups. There are people from everywhere, including some other cancer survivor teams. We try saying “Hello” in a variety of languages. Whole boats are singing and slapping their paddles on the top of their boats in time and some people are dancing. 063 087 077Even the dogs are enjoying the day. Mrs Cheong has a special fascination for the gladiator on his paddle board. So I reproduce these photographs strictly for her enjoyment. 090 089

As we queue to get down the Grand Canal, at points we are stopped by Police boats who are trying valiantly to make some order to the vast deluge of boats. Further down, waiting to get into the Grand Canal, there are frogmen in orange wetsuits trying to direct us from the water. We only encounter one boat where the temperament is less than joyful. A woman half shouts at us “This is not a race! Wait your turn!” as we try to find water and not crash into other boats. A few feet along, one of her crew snaps and shouts “Wait your turn, pushing along in your big ship!” and takes his oar which he launches at Mrs Cheong. All I can really do is roll my eyes at these grown ups. Really? Yes, it’s not a race. Is this why you are so upset we are ahead of you? Does trying to whack one of our team really solve anything? Perhaps he was grumpy he didn’t make her ‘sexy’ list. Leaving the grumps behind, we paddle on to the finish line at St Marks where we are thrilled to hear all our names called out over the loudspeaker. Medals are thrown to us in plastic bags and we then begin the long paddle back to the boatyard. Everyone is feeling pretty high on the experience. As we get near the boatyard, an ambulance races past creating a large wake. For one moment, it seems possible we will capsize, so close to the end of our watery journey but the team power up and we paddle through it. When we make the boatyard, it is with sighs of relief and also “are you shitting me?” expressions (particularly from me). This time, tying up the boat we have to cross 2 other boats before we can make the wobbly plastic-bottle pontoon. My trusty team mate Mr Ling is on hand to help me gently and encouragingly to cross the boats and get onto the pontoon. I am sincerely grateful for the kindness he repeatedly shows me, even though I am unsteady and ungainly at times. On the pontoon, other team members are there to take my hand and help me off. As I reach the more solid pontoon, I suddenly cannot breathe. I am not aware of feeling particularly anxious but my breath is hard to come by and it takes some moments before I can get it under control. Mrs Cheong is there, of course, mothering me and helping me to a seat, asking where my puffer is. But I am not asthmatic so there is no puffer to help. The breathlessness subsides and we do a cool down routine before going into our huddle where we try to take in the enormous challenge we have just completed. I think it will take some time for it to sink in.

We wander back to the hotel and shower. Some people are leaving that evening, some early in the morning and some, including us, the next evening. I am starting to be a little concerned about my breathing which makes walking around tricky. There are, obviously, lots of bridges in Venice so the climbing over them is taking its toll on me. But more of that later. Competing in the Vogalonga has been an amazing experience for so many reasons. To have shared it with other cancer survivors and team mates who have all been there to lean on has been incredible. The route itself is beautiful yet challenging and we met some fabulous people on our journey. It will take time to process everything that has happened but it will be an event I will never forget.

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Venice, part II

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Saturday dawns bright and beautiful. In the restaurant, we meet many of our crew members who have arrived at various points in the evening and it seems as though Wave Walkers have taken over the whole place. Mrs Cheong, of whom you will hear more later, is on toast duty and mothering everyone. We are all a bit bleary-eyed but everyone has plans for their day. We are agreed on meeting at lunchtime for a big team lunch but before that we decide to go to the Rialto market and buy fruit for the next day and to have a mooch around. On the way to the market, we discover that flipflops are no match for marble steps as Ms Gordon falls on her backside not just once but twice, leaving Italians to make a very stereotypical “Ay!” noise as she falls down. Rialto is heaving with tourists but we find our way to the fruit and vegetable market where it becomes difficult to decide what to buy, so much of it looks delicious and under the hot sun, it all smells wonderful. In the end I buy bananas, strawberries, cherries and nectarines. Ms Marsden buys ripe green figs. We sit down at a cafe for a cold drink and look at the many maps we have to try and work out where the lunch is being held. I must admit to being a little grumpy as I don’t feel particularly well but we finally agree that due to the exorbitant cost of getting a water bus, we will walk to the restaurant with lots of stops on the way.012

Ms Gordon has sat nav on her phone which, although the battery is running low, promises to guide us to the restaurant. At this point, we have not had the chase to find out where we are in relation to anything else so have no idea where the restaurant is. The sat nav takes us down tiny alleyways and we seem to be turning left and right every few feet. I decide to buy a hat and so does Mr Mason. We also buy a captain’s had for Captain Deryn. The man in the hat shop is delighted. The heats gets to us a bit and by 1pm, we don’t know where we are or where the restaurant is. We stop off at the end of a wharf for another drink and to use the toilet. My phone, obviously, is not working, even though I was told categorically that it would be. Thanks, Virgin mobile. Other people are able to send texts requesting rescue. By 2pm we are truly desperate and talk of finding any old restaurant to have lunch in in a defiant kind of way. We visualise the rest of the team eating by the side of the canal sheltered by umbrellas, sipping cool drinks and not looking hot, sweaty and slightly crumpled as we look. We walk back towards the Tre Archi bridge when suddenly there is a cry and we can see Captain Deryn running towards us! It is like being rescued from a desert island. We have followed the sat nav which has apparently taken us past the restaurant on the wrong side of the canal and is basically telling us to jump into the sea. This we will not do.

We follow Captain Deryn back to the restaurant where the rest of the team has been waiting for us, sipping wine and looking cool. Several of them are drinking something in a nuclear shade of orange. We see it all the time with people of all ages and sensibilities knocking it back like there’s no tomorrow. I am suspicious. Something that colour cannot possibly be good for you. I do not indulge. It is very good to meet up with everyone and we are all a bit anxious about the 30km paddle we are doing the next day. Anxious in many ways whether we are raring to go or just unsure of our capabilities.  The next day is a huge milestone for us both as individuals and as a team. Created in early 2012, Wave Walkers have come a long way and now we are about to embark on our biggest challenge to date.

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Venice, part I

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The time has come for the Vogalonga trip. For those of you who have not picked up on this so far, Vogalonga is a route through the lagoon, round Murano and back into the Grand Canal in Venice which can only be completed by man-powered boats. Well, I should say people-powered but that sounds a bit daft. I am sure you understand. So this is why Mr Mason and I find ourselves leaving the house at 2.30 in the morning to jump in the car, collect Ms Marsden from her home and drive to Gatwick for the ridiculously early flight we have booked ourselves. It is cold, I am in flipflops and it’s not a good start to the day. I have been having some pains in my left chest/lung area – enough to make sleeping and getting a full breath possible – so I am not feeling on top form but we have been planning and training for this for so long, there is no way I am going to miss it. At Gatwick we separate as we are flying with Monarch while Ms Marsden has splashed out on British Airways, complete with a snack breakfast. On Monarch we have 2 attendants with a tea trolley, rather reminiscent of train service. We also bump into fellow paddler Ms Betab in the queue for security and find out she is on the same flight as us, sitting just across the aisle. For the first time in ages, I do not have a screaming baby sitting anywhere near me which is something of a relief.

Arriving at Marco Polo airport, we manage to work out how to get tickets from the machine for the waterbus which will take us to Venice proper. So clever are we that we can even help other people. I don’t loiter deliberately in order to look smart, but both Mr Mason and Ms Betab have to relieve their bladders so I am left looking after the bags and helping people. Once we are through security, we head for a cafe and wait for Ms Marsden who, once she arrives, tells us she didn’t even eat the complimentary breakfast. Oh, the thought of those scrambled eggs and little squashy sausages that you only get on flights going to waste. We point out there are chlldren starving in Africa etc etc but she is unrepentant. Once we get outside, we realise how hot it is. The forecast has shown us good weather for the whole weekend with temperatures around 29 degrees. This will make for hot paddling and I am immediately hot and bothered in a most unattractive way. The waterbus arrives and we all pile on and are made to cram into the fore cabin which is already pretty full. Bags are slung this way and that and we squeeze together in the hope of not being bounced off our seats by a recalcitrant wave. But it is fine and we arrive at Rialto to find the place fairly heaving with people. The hotel we are staying in is one we have stayed in before and somehow, digging into our memory, we manage to find it. As it’s early, we leave our bags there and go back out into the sunshine to find Ms Marsden’s hotel which is down a side alley and looks nothing like a hotel. She is pleased with it, though, and says the rooms are fine and the people running it are helpful so all is well.

I would like to tell you in detail what we did next but I can’t remember so you’ll have to make that bit up. At lunchtime, we find a nice restaurant and sit at tables outside. For some reason, I order a pizza and, thinking it is just the lunchtime menu, expect it to be small. It is huge when it arrives and way more than I can eat. I get a little help from Ms Marsden but in the end we have to admit defeat and even shun the offer of a takeaway container for it. Gradually, we all start to wilt with both heat and tiredness so we take ourselves off to our respective hotels for a snooze. A quiet meal at the hotel in the evening and we are ready for Saturday and whatever that brings!

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Another day I will never get back

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Well, this is a day I will never get back. It’s a tired week and in the night, I find it difficult to sleep owing to a pain in my chest which seems to be making breathing difficult. I have had enough of all this nonsense and swallow 2 sleeping tablets. Every in breath I take is painful when it gets to a certain depth. I cannot fill my lungs with air for a stabbing pain in my left chest. It’s not like a band around my chest but just stabbing pain and it makes sleep difficult. As morning dawns, the pain becomes slightly less but it is still there. I am pleased that I have an appointment at the pain clinic at the Royal London Hospital for Integrated Medicine as I have a very present pain which I would like some advice on.

The weather is wet and Mr Mason has taken Dog to drop him off on his holidays. We have been asked to create a list of the times he needs to be fed, the times he needs to sleep and when he is allowed biscuits. I haven’t done this and I have a strong suspicion Mr Mason hasn’t done it, either. Dog will tell them he has biscuits at each meal and by biscuits, I don’t mean the Dog kind. Dog has a very sweet tooth and if Mr Mason and I are eating cake, he will wait patiently until we have finished for his piece of cake.

I set off in the light rain to get a bus to the underground and from there on to the Hospital. The journey was actually OK. I got a seat all the way which is unusual and surprising. The pain clinic is not signposted at the Hospital but I remember where it is and find it. It actually consists of a couple of chairs next to a secretary’s desk. In order to see a doctor, you have to walk behind the secretary’s desk into what looks like a cupboard but which you realise is a small suite of rooms. My doctor today is bright and chirpy and very pleasant. He apologises for the fact that I always see a different doctor at the clinic. Then he asks what medication I am on. I explain which bits I have increased on his colleague’s advice and which bits my GP didn’t want to change and he seems very happy and tells me I am a very good patient. There is then a bit of a lull in the conversation and I realise he doesn’t really know what to say. He talks a little about a pain psychologist which my oncology psychologist is very keen on me seeing but he goes through a whole rigmarole about not wanting too many doctors or surgeons. He also tells me repeatedly that the medicine they have prescribed is not for cancer. “You can stop it at any time!” he beams. He then says they will discharge me but that if I want to come back “most delightedly” he will make another appointment. I try to talk about the pain psychologist again but he is not having any of it and I am not sure what the appointment is about. He tells me “You tell me what I can do for you and I will do it!” Anything except refer me to a pain psychologist. He is happy that my psychologist is at St Mary’s. “It is good to have all your treatment in one hospital”. I explain my treatment is at Charing Cross but there was no room for the psycholgist there so she took a room at St Mary’s. “Yes!” He is still beaming. He is going to write to my GP and send me a copy of the letter when I hope the outcome of my appointment will become clearer. As I leave, the secretary tells me in a low voice to phone back within the year or I will just be discharged. I leave the hospital in a state of bewilderment. What just happened? I am really not sure except the doctor was very nice but has bamboozled me with sweet words and promises. As I leave the hospital, I am pleased to see it has stopped raining.

On arriving home, I make myself a salad smoothie – lettuce, cucumber, tomato and apple. It is delicious. Fully replenished I decide to seize the day and contact Virgin Mobile about my phone. It has not worked for the last 10 days and Virgin have had it since Friday. They tell me repeatedly that my phone will be back with me within 4 working days. I explain I am having a lot of appointments at present and that I really need a phone. They do not loan phones and other than giving me a normal-sized sim card to use until my phone is ready (when I will have to delve into the workings of Virgin Mobile to get another micro sim card), they cannot help. I explain what my situation is but still nothing is done. So today, I phone them and am on the phone for 40 minutes. At the end of this time, I know the phone has been looked at and sent back to Motorola. I now have to wait for someone to call me (hopefully not on my mobile) to discuss what phone I am going to get next. “But surely I just get the same phone again?” I ask. “You might if you push them”, says Ash, my helper.

So my whole day has been wasted with people who are not really doing anything but requiring me to do lots of jumping up and down in order to get their attention. I truly despair of Virgin Mobile. This is the first time I have had a problem with a phone and it has been a ghastly experience and certainly one I would not want to repeat. The phone is only 6 weeks old and is also insured but I don’t know whether this makes it more complicated or not. I would have thought if my phone stopped working, they would take the old one and send me a new one. Isn’t that logical? Not in Virgin Mobile’s world. If you buy a new phone it arrives the next day. How can this service not be applied to repairs? We have 2 landlines, cable tv and mobiles with them but looking after your customers doesn’t seem to compute for them. Going through hospital appointments without a phone is a nightmare. I have emailed and talked to them, tweeted and posted on their Facebook page and they simply do not care. I rate their customer service as exceptionally poor.

Memory full

by

This worrying business is funny. But perhaps I should go back, not quite to the beginning but to the start of this chapter. As many of you know, following surgery to remove a rather pesky tumour, my wound does not behave well. Firstly, it picks up a variety of infections, most notably MRSA. There is a kerfuffle at the GP’s practice. I have a phone call from the practice nurse who has taken a swab from me to tell me there is a prescription waiting for me. I duly go along and collect it (or, more likely, Mr Mason collects it) and I begin taking some horrible antibiotics. The next morning, the GP himself phones to check I have collected the medicine and am taking it. This is pretty much unheard of. When I speak to the practice nurse sometime later and ask how many cases of community MRSA she sees, she says she has never seen a case of it in the practice before. Most cases are acquired and dealt with in hospital but mine has been acquired on a hospital visit and then carefully taken home and nurtured. As soon as it is only just healed, it is blasted with 25 sessions of radiotherapy from outside and 3 more sessions of the noxious Docetaxel from inside. It’s a combination that makes my wound and I break down and weep. So, the wound continues to be a bit horrible, never really healing, suffering from the occasional staph infection but never getting to the point where the skin is closed over it. It’s a pain under the arm. The wound has been here so long I am tempted to enter it on the annual voters’ registration form.

A couple of weeks ago I decide I Have Had Enough and speak to my breast care nurse, Vanessa. She is lovely and looks at it with concern on her face. She doesn’t know why it is not healing. I do not know why it is not healing. We are officially puzzled but I Have Had Enough. This means we get to call in the big guns and an appointment with the consultant surgeon is rustled up. During my time in Bangkok with Ms Mason I use Bactriban on it which is The Thing for people who have had motorbike accidents, apparently. Although I have not had a motorbike accident, we are optimistic it will clear the wound up. Alas, it does not. Neither does a week of drum banging and smudging at the cancer centre in Bristol. The wound is determined not to go anywhere and I am equally determined to get rid of it. Although I joke about it, the wound weeps and seeps onto clothing which can be embarrassing and it positively ruins the look of clean, crisp white sheeting. No wonder I am not a Domestic Goddess.

So, the day of the appointment comes and Mr Mason meets me at the hospital so we can see the consultant together. The lymphoedema nurse also thinks I have an infection in my arm and will not give me the wonderful Manual Lymphatic Drainage whic his so soothing in case she sends bacteria scooting all over my body. Mrs Hogben wants to look at everything. She squints at the wound and prods around it. She looks at my arm and touches it, pronouncing it a bit hot so she decides she will prescribe antibiotics. She also swabs it in case it is a return of MRSA. I ask if she will cut the scar out and re-stitch. She thinks she can do this but first must be sure I am free of anything untoward. In the case of Inflammatory breast cancer, it is thought better to wait a while before having any kind of reconstruction in case it spreads cancer cells throughout the body. As I am now 2 years post diagnosis, we can start to approach the subject but only sideways on as I am not sure it is for me. She cannot do so much as wave her scalpel at me until I am free  of suspected infection and also cancer. I have been having pains in my arm and shoulder, especially at night, and the lymphoedema nurse says it is not lymphoedema which is causing it. She has a curious look on her face as she says this. I mention the pains to Mrs Hogben and she immediately orders a CT scan and bone scan. And that is pretty much that. Come back in a week if it hasn’t cleared up, collect prescription on the way out and do not pass go. You know the kind of thing.

In the intervening week, I duly take the antibiotics and check my wound. It is still sticky and does not seem to be getting any better. The pain in my arm and shoulder wake me at night and I have to take pain killers. It is not a matter of getting in a comfortable position, it is just a matter of switching the pain off. So here is where we came in. Imagine if your computer was running a background programme that used quite a bit of memory. You’re not thinking about the programme running but you are aware your system is running slowly. That’s me. My background programme is worry. Worry about the cancer coming back or already being back. I am not aware of it but I know my daytime life is running slow. I am not functioning at full capacity. I sit about in my pyjamas and struggle to think about things or remember words. My memory is really running slowly. So many words are disappearing with this damned programme running in the background. I can’t remember the words for ‘limescale’, ‘washer’ or other plumbing-related terms. We are coming round to the next appointment and we’ll make some decisions, although most will be put on hold until the pesky tests are out of the way. Meanwhile I am reminded of my mortality when women in our Inflammatory breast cancer group on Facebook die, going downhill so quickly. One week, one was choosing a wedding dress, the next she was in a hospice and the Doctor said “If you want to get married, do it now”. There often seems no time to adjust to the scale and scope of the illness.

So I suppose this is what is running in the background right now. A programme on a loop that’s saying “What if?” I don’t think I’m being dramatic, I think that’s just how it is. I am not aware consciously of worrying but I reckon it accounts for the pyjama days and inability to remember words. Or at least, that’s my excuse.