Tag Archives: cancer

Lark’s Diary XI

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Well, I’ve just found out it’s going to be Christmas although I don’t know what it’s about except lots of extra delivery men come to the door and leave boxes lying all over the place. Some packets are smaller and mum puts them in a bigger box in her office so it’s quite easy to steal and run away with. Then she gets a bit cross and puts on her cross voice which is one up from her disappointed voice but nowhere near her “I can’t believe you did that!” voice. That voice was used when I ate her new glasses. She has two pairs but I like one better and the chewy plastic arms have just the right consistency so when she left them on her bedside table when she went to have a shower, well, it was irresisible. The cats talk to us sometimes but we can’t understand exactly what they are saying enough to answer but we get their drift. 1. Don’t sniff a cat’s bottom (unless its asleep) 2. Rub your head on the side of the cat’s face if it’s feeling in a good mood. 3. If it hisses, back away politely.

We also have language which is more than just some old woof, you know. Whippets have a good range of language and my repertoire of moaning, sighing and groaning is extensive. Mum doesn’t understand all of it, of course, but she tries.

With all the parcels arriving, mum has invented a new game which I like. She finds something sticky and then sticks it on my forehead and I have to spin round in circles and rub my paws on my head until I get it off. It’s a good game to play indoors because we have to do lots of indoors things lately although we did have a good run in the woods yesterday and got really muddy. It was great fun. Mum and Mark are putting a new bed together in the annexe today and mum is also trying to wrap presents and sleep at the same time. Mark’s mum and dad are coming for Christmas and are Very Old so they are sleeping in the annexe so I can’t trip them on the stairs and kill them. Our other visitors are all quite young, at least, no older than mum.

We are still struggling with my claws. Again, some nosey woman said she thought my claws were a bit long and when we went home mum got the cutters out so she could trim a few. The thing is, it always feels like she is going to cut my paws off and I have dreams where she cuts them off and them sews them on her own feet so she can run really fast. Of course, she doesn’t cut my paws off and gives me Strictly Forbidden chocolate buttons while she does it. It doesn’t make it any better, though.

So, Christmas. There are lots of good food things coming into the house with 2 sorts of meat, smoked salmon and smoked eel, lots of very stinky cheese and way more than mum, Mark and his parents can eat so either the rest is for Archie and me or there are more people coming to expand the pack. I expect it’s the latter unless it’s the Christmas donkey who had the baby or the fat man dressed in red who seems very popular at the moment. I am hoping it’s Ollie and Fran with Becky and Rouzbeh because they play with us and run around. But even if it is the fat red man and the donkey with the baby, we’ll have a good time

So I hope you all have a good Christmas with plenty of stinky cheese and a big pack around you. If you get presents, I hope you appreciate them and the final words of wisdom from my mum is “Don’t give dogs sprouts”. I don’t know why; they’re quite delicious. And if they are worried about the fall out, I think this big black animal is far worse than Archie and me.

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Don’t do drugs, kids

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Sometimes it takes me ages to write the next blog. It is usually because life gets in the way in some guise or another and, in this case, it’s because I’m feeling unwell in various ways. No sooner than we get the good CT scan, the rib pain comes on and doesn’t give up. It stops me from sleeping and I can actually point to the areas where it hurts. “It hurts when I press here” I tell Mr Mason. “Don’t press it, then” he says, with the age-old family joke. He speaks to the GP who says he will ask for an ultrasound of my liver. A couple of days later, I go to see a different GP from the practice. They are all nice, accommodating and listen to me but I am struggling to get someone to actually examine me. The second GP doubles my morphine so that we can get on top of the pain. He also writes to my oncologist to ask for a bone scan. Bone scans are my least favourite thing as they so claustrophobic. This GP tentatively examines me but really is interested in pain so that’s what his goal is. With this amount of morphine in my system, I am really off my head. I go to see another GP a day or so later (the exact chrononology is a bit muddled, unsurprisingly) to check his opinion of my  medication which he concedes is a little high but as long as it’s got on top of my pain, that’s fine. I can also take a sleeping tablet should I wish to. He also feels around the painful area on my ribs and can’t find anything untoward. He is quite reassurring.

The difficulty in taking lots of morphine is that there are side effects. I am in the car with Mr Mason when I can quite clearly see Mr Mason jnr sitting in front of me on the seat at the front of the bus carrying a big log and wearing fawn trousers. I text him to see if he will turn round but receive a text back saying “No, I’m not”. I know it’s pantomime season but I don’t get into the “Oh yes you are” repartee. He probably wouldn’t respond, either. I have conversations with people I know and people I don’t know, often deep and interesting but I find it a little concerting when Mr Mason breaks in with some real live conversation and I realise I’ve been off in my drug fuelled world again. I decide to cut down the amount I am taking gradually to see whether the pain returns or not and manage to get back to my normal level in 2 weeks which actually impresses the oncologist. He thinks that as the pain has subsided, it is probably musculo-skeletal and that it will flare up occasionally but that’s about it. He’s arranging for a bone scan which he says won’t be before Christmas and smiles with me as I realise I will get a week off chemotherapy over Christmas.

In between all this muddle, my friend, Mrs Jones, comes to visit me from Nottingham and we take her to see the seals. Ever since I open my eyes I don’t feel right. Can’t put my finger on it but I just feel a bit icky. As we are leaving to pass the last of the seals, we see a small chap who has found some water channels and is busy swimming up and down them. In one lane, he finds it blocked by a bull seal and his little fins go twenty to the dozen to get out of there. All the while he calls for his mum who ignores him and he seems to get further and further away from her. He starts to scramble up the grassy bank towards us, calling and puffing for all he’s worth. When he gets to the top he does the one thing I suspect will kill him. He puts his head through the fence and we jump away as though burned. If you take a look at him you’ll see why someone with less self-control might just have put a hand down to stroke his head, unwittingly meaning his mother will reject him and he will die. After a few moments calling us all Mum, he flapped his way off again towards another cow with her pups but he wasn’t well received. I could never be a wildlife photographer or journalist. The plight of this one little seal pup has stayed with me.

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As we leave Donna Nook, I begin to feel worse but we haven’t eaten so maybe that will make me feel better. It doesn’t. It just makes me want to urge the tea lady to hurry up with her food and then for my companions to eat faster. I am rapidly feeling so ill I don’t even feel I can speak. I signal I need to go home. Urgently. We arrive home, I dash to the bathroom, show Mrs Jones my trumpet lights and then say that I have to go to bed. She is great about it and has a good old natter with Mr Mason downstairs while I crash out. My temperature goes up and down, I feel a bit chilly and then OK so I tough it out. Over the next few days I am in bed with aching limbs and headaches but determined not to go to hospital. One one day, Mr Mason also feels a bit yucky (or “a bit umpty” as his parents say) so I am convinced it is a virus. Gradually the symptoms subside and, due to the reduction of my morphine, I stop seeing things and having conversations whether I don’t know if I’m awake or asleep. On our wedding anniversary – 36 years this year – I write Mr Mason a card but get confused with Valentine’s Day and our anniversary. I end up writing a lot of hallucinatory stuff which will no doubt make its way through the family annals as to “This is when Granny went mad and we have it in writing”. Actually, should the day occur when I am a grandparent, I am going to be Babcia in honour of my lovely friend, Ms Baranska, who very sadly died on 22nd November 2015, another victim of cancer, this time of cancer of an unknown origin. She was just 32.

Our exciting news is that not only is Mrs Safaie snr coming to spend Christmas with us but it also looks as though Mr and Mrs Mason are also coming. This news is absolutely epic given that Mrs Mason snr hasn’t stepped outside the back door for several years and I’m not sure even owns a pair of shoes any more. In between high temperatures, headaches and exhaustion, I have been ordering a new bed and bedding, re-arranging the bedrooms and making sure the annexe is up to scratch, getting a wardrobe dismantled (not the Mr Shaya jnr way), Christmas shopping and planning work for the new year. The physical work is not mine, of course, but that of Mr Mason and our gardener, Gavin.

I was almost on the point of declaring blog bankruptcy given that it has been so long since my last episode but I enjoy writing and although it’s frustrating when I can’t write chronologically, I suppose that level of control also has to be let go. I know there have been messages on Facebook and via email that I have not answered but if the choice is between a quick nap or writing, the quick nap will often win. So just sit back and imagine how the last great storm whipped through the village making it sound as though we were on a beach and shaking the ancient trees to their foundations (none felled, though, that I saw). The owls were quiet that night but are now back with a vengeance. And at the weekend we went to the Horncastle Christmas Market which is low key but entertaining and  I got to hold a barn owl which was incredible. I wish I could sign off with Too Wit, Too Woo but alas, that’s the Tawny owl so until the next time, Eeeeek eek eeeeeek!

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Lark’s Diary IV

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Yesterday we went somewhere and Archie and I didn’t know what or where it was. It wasn’t shopping, it wasn’t the hospital, it wasn’t the woods and it wasn’t the beach but it was very good. There were some bad bits like these big engines that made a lot of noise which I didn’t like. Mark said “Lark doesn’t like the steam engines” and he was right.They smelt horrible, too. There were lots of people and some were riding on horses and jumping which was good but we weren’t allowed to join in. Mum gave me a Bonio and I pretended I didn’t want it until she went to put it away and then I ate it all up. A lady offered me some water but other dogs had been drinking from it and I thought that was a bit yucky. She said someone nearly wee’d in it but she’d stopped them but I’m not sure she was right because it smelt funny and I think someone had wee’d in it without her seeing.

Lots of people came up to us and said we were lovely but mostly they liked Archie because he is so big so I pushed my nose in to make sure I got stroked, too, otherwise it’s not fair. Mum took us to see some sheep and some pigs and when we came out of the tent she saw a sign that said “No dogs allowed” but we were very good and didn’t bark or anything and Mum just said “Oh dear”. The pigs were enormous but Archie didn’t like them much and tried to pull Mum out of the tent. Mum did some shopping and bought some food but no dog food. There was a lady giving away dog food but we didn’t like it and neither did any of the other dogs that we saw.

There were some men in red coats sitting on horses and they had hundreds of dogs with them. The man on the horse said “Wait!” and all the dogs stopped and waited and then he said “Come on!” and they all moved on. Mum said the dogs used to chase foxes but that they aren’t allowed to now which she thinks is a good thing. Archie thinks he would like to chase a fox but just on his own, not with a lot of other dogs. I think foxes are a bit scary. All the dogs stopped to have a wee on the same bit of fencing, one after the other. Mum says I am obsessed by wee but Mark never goes past a toilet without going into it so I don’t see I’m any worse. Mark says Mum is obsessed by wee at the moment, though. I didn’t like to have a wee with all those people around so I waited until we got out of the gates and were on our way to the car and then I had the biggest wee in the world; so did Archie.

I am still trying hard with this thing Mum calls ‘house training’ which means not weeing in the kitchen or utility room. Sometimes I think I want to go but then it’s raining and I don’t want to get wet so Mum puts me in my crate for a little while. I don’t mind if she’s in the room but if she’s not I like to sing to myself. I sing the Song of my People. It is a very beautiful song, very long and with many notes. Mum likes it a lot because when I sing she always comes back and says “What are you doing, Lark?” I think she would like me to teach it to her so maybe one day I will.

Another strange thing happened to me this week. Mum said “Oh, Lark, I think you’re in season”. I don’t know what that means but I do know it means she put some pants on me which I didn’t like very much. They are a bit papery and I love tearing paper so even though they have pictures of fish on them which I like, I had to tear at the paper and then they came off. Mum just got some sellotape, though, and taped me into them. And then a magic thing happened! I went into the garden to have a poo and when I finished it wasn’t there! Later on when Mark took my pants off, the poo had magically appeared in my pants! It was so strange and I still can’t work it out. Mum says I’m not to talk to any boy dogs except Archie which is OK by me as I’m a bit shy.

Here is a picture of me and Archie at the steam engine animal dog/pig/sheep place. We met the real Peppa Pig but she was asleep so we didn’t get to talk to her. She looked very nice, though.

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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.

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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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

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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.

Spring cleaning

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Is it Spring yet? I wonder because I am having a Spring clean and obviously want to do it at the appropriate season. Ah, I see you visualising me whizzing around with a vacuum cleaner and feather duster. Well, you’re wrong. I am Spring cleaning from the comfort of my sofa although it’s becoming something of a nuisance. At the end of last week, my computer decided it would be best if the screen were in turquoise and purple. Clearly my computer and I are disagreeing a little here. I would prefer the white background with black, readable text. Master Mason tells me there is a problem with the connection between the screen and the keyboard. I am sad. The little laptop has helped me right through chemo and endless hospital appointments. I don’t want it to give up the ghost just when I am getting back on my feet. But it’s not to be. I have to be connected with a world in black and white. not turquoise and purple so I have to buy a new laptop. Master Mason is very helpful in this respect and advises me on what to get and where to get it. I duly order and purchase and it arrives today. Hurrah!

My mobile is also playing up. What is the thing about lasting only two years? It sticks and doesn’t allow me to answer calls sometimes, making me pretend I am not in. It needs the battery taking out of the back and re-booting before it will behave properly again by which time, obviously, the caller has given up and gone. Also, what is the thing about calling and not leaving a message? Surely if someone wants to speak to me, they might also like to leave a message. I must admit, I have got quite a fearsome answerphone message. It says very sternly that if I don’t recognise the number I will not call them back, hopefully deterring all the horrible spam phone call people one gets. It seems to be deterring perfectly nice and ordinary people from leaving messages, too. So, taking further advice from Master Mason, I call my service provider and order a new phone. I like to think I have beaten them down to a miniscule price but, to be honest, the price they quoted was so low and less than half what I was paying 2 years ago, that I feel I don’t have the nerve to demand they give it to me for less. The one bad thing is that the new phone will only have a micro sim card in it so all my contacts will be lost once I activate the new phone. Hence the Spring cleaning.

It actually feels quite daring to be deleting so many people. There is only a certain number I can be arsed bothered with transcribing onto my laptop and I wonder who half the people are. I have so many contacts, some I don’t even recognise. I realise strange things – I have started a collection of friends named Jane in the last couple of years. I now know 4 Francescas. When we named Miss Mason, we didn’t know anyone of that name but since that day, I have met 3 more who have become friends one of whom is actually Italian. I have a slight pang that I might be losing an important number or email address as I delete them but really, in this digital age when everything is online I think anyone who needs to find me will be able to. And hopefully vice versa. Only time will tell…

 

Dog’s Neighbourhood Watch

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My blog has come to life. Now, like a naughty schoolgirl I get reminders of homework blogs I haven’t handed in. You’re late! they chortle. People will be missing you! Why? Does someone need the tone lowering in their vicinity? I am, as you know, adept at that.

Not much new has been happening around me lately. I miss paddling on Saturday due to extreme fatigue but this is not news. I also miss a team meeting which I suggested which is really not cool. I manage to weed out DVDs we no longer want and send them off to their new homes so that now I can sit and look at the shelves which look so tidy. For anyone who knows our book and DVD collection they will know this is actually quite big news.

During the week I am invited to a spa day at Brown’s hotel. Brown’s is apparently the oldest hotel in London. I counter this by saying that Kettner’s is the oldest restaurant in London and that shuts them up. Who? you cry. Well, it’s a bit of an uncomfortable story, being on the receiving end of something nice when the people giving it are a little, how shall I put it? Self-absorbed? The story goes like this. I am tired. We all know and are sick and, well, tired of hearing me say this but it’s true and I can’t escape it, much as I would like to. Someone at Maggie’s notices this and thinks she will do something about it so she arranges for me and a few other people to go to Brown’s Hotel for a bit of a spa day. It’s sponsored by another charity and Maggie’s will get us a taxi there so all is good. The agenda for the day shows yoga to start with followed by a ‘Head in Heaven’ treatment with a light lunch and makeovers happening all day.

We arrive at Browns and are met by a very nice lady who shows us up to a suite. The suite is fabulous with bowls of tulips and hyacinths everywhere and a bathroom full of Ren products (I restrained myself and only brought a soap home). We are offered drinks by a waiter and all do a lot of smiling. We are offered seats and then the squirming begins. I can see why it all went wrong. There was no plan. No matter how free and easy and informal you want a session like that to go, there has to be a plan. No plan = stuff goes tits belly up. It is suggested that we all introduce ourselves so we do this briefly and then the organisers (I hasten to add these are NOT Maggie’s staff) begin to talk about themselves. One of them has had a double mastectomy in the past and is now fully reconstructed, one of them tells us she likes hugging and feet and will be attending to both during the day. The last spot is reserved for the makeup artist who works with the stars and will give us tips and techniques throughout the day as well as making us up. She begins to tell us how she has not had cancer but has had 2 scares so she knows how we feel. Umm. No. You don’t but good on you for trying. We are then asked what we would like to do. The day is ours! We all sit and look at each other. It is decided that the makeup lady to the stars will do a visualisation. I sit in a comfortable chair and do what I do best which is fall asleep. Periodically I open my eyes a bit to see if people are still doing a visualisation or whether she has stopped droning on. It is hard to tell because some people have their eyes open and others are closed. Eventually, I manage to wake up sufficiently to move in my chair and that seems to be the signal for the visualisation to finish. Hurrah. We are told how this group of women moved to Cornwall, one beginning an organic skin care company and the other starting a charity for women to have somewhere nice to go. The other one is the makeup artist who has been working for 4 days non-stop and keeps telling us how tired she is.

I am going down to the Spa for my Head in Heaven treatment. It is divine. A lovely woman massages lots of oily stuff into my face and then massages my scalp. It really is fabulous and relaxing and I could do with a lot more. When I arrive back at the suite, lunch has arrived. In a moment of inspiration they have ordered the afternoon tea so we have an array of tiny sandwiches and little cakes to contend with. Every time a plate is emptied, another full one is put in its place. There are even scones with a massive bowl of clotted cream and it is all delicious. It’s nice to have lunch and to chat but the women running the day really seem to clump together and talk about themselves quite a lot. I had been looking forward to being made over or having my feet massaged or even, as was on offer at one point, having the makeup lady do a Reiki session for me. Nope. None of it happens. They eat cake and drink tea and that’s it. No makeovers, no food massage, no Reiki and thankfully, no yoga. We all eat cake and drink tea, too, and then at 3pm it’s the end and we all get up to go, uncertain whether another taxi is coming to collect us but they don’t know about that, either.  I am offered the choice between a candle or some face products and I choose the latter.

It’s a strange day. I feel I have had some very nice things happen to me but also that I have somehow missed out something which was half-promised but which failed to materialise. It leaves me curiously unsatisifed. I present Mr Mason with the bar of Ren soap and know he will not appreciate how expensive this stuff is. And he doesn’t.

In the evening we watch a documentary on apes and monkeys. It is fascinating and we are given a display of Dog’s Neighbourhood Watch skills when the howler monkeys start up. We are always able to tell in television drama whether the animal noise is real or not. Dog will only respond to animal noises made by an animal. Humans pretending to be dogs or other creatures just don’t cut the mustard for him. Where would Percy Thrower be if Dog ruled the world? Once the howler monkeys get going, Dog goes to the window to look for them. He pushes the curtain aside and looks up and down the road. No sign of them there. He then goes to the back door to peer out into the garden to see where they are. It perplexes him when he can’t find them. Eventually they quieten down and Dog goes back to bed and back to sleep, one eye ready to open at the slightest animal sound.

Next time, I’ll tell you about the time Mr Mason gave Dog artichokes for supper. Commonly known as ‘fartichokes’ for their flatulent power, Dog’s duvet hovered about 2 feet above him all night and I nearly died of asphyxiation. There. That’s something to look forward to.

Seriously, really?

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I have gone beyond the pale, so far I am a mere whitewashed speck and I don’t like it. When Miss Mason was small, she used to say “I don’t like it!” in a very peculiar voice that I still find myself using today. Toddler speak. Anyway, on Tuesday I go to Charing Cross to see two friends, one of whom is having surgery and the other who is having a new drug, TDM1. So new is this drug that it is not on the NHS prescribing list and no-one seems to know anything about it. What are the side effects likely to be? I ask. “Don’t know. No-one knows. It’s a mystery” she says with resignation. Yep. Nothing to do except take the drugs and hope for the best. I am actually hoping for more than best because she is one diamond in my depleted night sky at the moment. My other friend is having herself tidied up. This is short-hand for removing a radiotherapy damaged implant, re-doing the reconstruction and up-lifting the other breast so it will resemble the other. When I go to visit her, there is a woman in the bed opposite she describes as ‘a shouter’. Oh, yes, indeed she is. She shouts at every approach from a nurse. “Don’t do that! Don’t touch that! Don’t move it!” As soon as one nurse has seen to her she is ringing the bell again with a delighted look on her face. It is time to go when she orders a commode. As the curtains are drawn we are hoping it will just be for a wee. Some things should really be private. However, it sounds as though she has a racehorse in there as a Niagara Falls sound-a-like issues forth which continues far longer than nature intended. Henceforth she is known as Shergar. I hitch a ride home with my TDM1 friend who is already feeling the effects. The only information she has been given is a brochure for health professionals. Sigh.

Today I have a meeting at Kings Fund which starts at 11, leaving me time to have a slow start to my day. I admit I have been feeling more and more tired recently and am glad it does not start at 9. I work out what time I will have to leave by and then work back from there, giving myself a time I must get up by. I have coffee, I shower and then dress as I listen to a really interesting Radio 4 programme on women in Islam. I keep glancing at the clock to make sure I am on time. When it says 10.33, I go downstairs and gather my things together before Mr Mason gives me a lift to the station. Fellow Londoners will be spotting the deliberate mistake here. If you ever ask someone in London how long it will take to get from point A in London to point B in London, they will overwhelmingly say 1 hour. It will take me almost an hour to reach Kings Fund and I am leaving the house at 10.45. Hmmm. My brain does not detect the mistake until I am on the train and glance at my watch which says 11.10. I am absolutely thrown by this as though I have gone through a time warp. It then dawns on me that I am out in my timings but a whole hour. Given that some people at the meeting have travelled from Whitby and still arrive on time, I hang my head in shame as I sidle into the room.

Sometime during the course of the morning, the second bombshell drops. Mr Mason rings to ask where my passport is. He has looked in the drawer and cannot find it. Now, I have a memory of doing something with my passport in the last few weeks but I am not sure what. I feel I needed to enter the details on a form for, possibly, insurance. I remember showing it to Mr Mason and saying how I looked like a peasant or Russian hit woman. I could not decide which. What became of the passport after that, I am not sure. All day I worry about it. I absolutely hate that cancer and chemotherapy has so massively robbed me of my memory. I know I joke about it and everyone says “Oh, my memory is terrible, too” but it’s not the same. I had a good memory. I could file things away mentally and then retrieve them. I knew where I had put things. My brain worked. And to have that suddenly taken away is – well, devastating. A part of me has gone and while I was so ill I didn’t notice because I was only focusing on hour to hour or day to day. Now I am attempting to reconnect with my life in a meaningful way, I am reminded time and again of what I have lost. “It will come back!” people say, reassuringly. When? Just when will I be able to remember what I did and when, who said what, where I put something? How long does it take? Like this, I am not me. Perhaps, more tellingly, I am not accepting the me I have become. The person I do not want to be. I am not angry I had cancer. I am angry with the effects of the disease and treatment and where that leaves me. Yes, yes, things could be a lot worse, I know. But that doesn’t take away from how I feel about being different.

So, I need to turn the house upside down in an effort to find my passport which I will need in the next few weeks. It’s a real pain and I don’t like it.

Just to cheer myself up and because I have learned how to, crank up the volume and enjoy 3.21 minutes of  The Hives  🙂