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.
So Monday is the first day I have my chemo at Lincoln County Hospital. My new oncologist seems a lot sounder than the last in that he will answer questions and doesn’t appear to be having some kind of breakdown. He’s in agreement about being seen every 3 weeks and generally we are on the same page. We get there on time and I am called into the chemo suite just before my appointment time of 11am. Hurrah! They are on the ball and do my observations quickly. My nurse, Laura, asks whether I would mind if she plugs me into my portacath as she is learning the procedure. Everyone has to learn so I say it’s fine. I have had trained nurses take 3 long and unpleasant attempts to hit the centre before and I’m sure she won’t be that bad. She is observed by a senior colleague and happily hits it first time without much pain. A portacath, for those of you who don’t know, is a device sewn into your chest with one tube going into a vein near the heart and the other end sewn into the jugular vein. It’s not really visible apart from the scars where the stitches have been. The nurse feels around it and then inserts a needle into the centre of the port which has a rubbery membrane over it. If she hits the spot, the needle goes into the port and the chemo goes into the tube then the vein. It’s a great system once the incision has healed as there are relatively few risks and little chance of infection, one of the major worries with cancer.
So by 11.20 I am wired up and having a saline drip fed through, waiting for my chemo. At about 12.20, the pharmacist appears to ask me about my prescription. He is unsure (he says there is ‘some debate’) about what else to give me. Do I need steroids? NO!! What about anti-sickness meds? I tell him I manage that orally as the nausea is unpredictable and can come on at any time. He offers to give me Ondansetron, a strong anti-emetic with the chemo. I tell him this is unnecessary as I have Domperidone, a lighter version, at home and that this is fine for me. After some humming and ha-ing, he goes away saying he will go and sign the chemo off. I wait. A nice lady brings me coffee and biscuits and a bit later a sandwich. People come and go but I am still sitting there. I just feel more and more upset. I ask the nurses when the chemo will be ready and they check with pharmacy but say it isn’t ready yet and apologise again and again. I ring Mr Mason, who is waiting in the reception, and advise him to go and get a sandwich and possibly let the dogs out of the car as they are waiting patiently for us, the infusion only due to take 30 minutes.
By 2.30 I am distraught and, despite my best efforts not to, start crying. A lady sitting next to me alerts a nurse who asks what the problem is. I explain I have been there since 11am and I just want to have my treatment and go home. She promises to go and ring pharmacy again. At 3pm, the pharmacist is back on the ward having a lovely chat with a patient which seems to go on forever. I stand up and stare and stare, willing him to look at me and feel guilty that he hasn’t done what he said he would. If I was not wired up, I would go and interrupt him and ask him what he thinks he is doing. I rarely complain on the wards. The nursing staff work so hard and I know there are things that go wrong which are rarely their fault. He manages to ignore me although he must feel my laser eyes burning into him. Another nurse comes by to apologise and, seeing I am so upset, asks Mr Mason to come in and placate me. I am seriously thinking of just taking the needle out by myself and going home. Mr Mason persuades me this is not a good course of action and goes to let the dogs out once again. I feel angry on their behalf. Eventually, at 3.30 my chemo arrives and the pharmacist has ordered Ondansetron despite our earlier conversation. The nurses call him over and ask how they can override the system as I refuse to have it. He looks at me and says “Hello” without smiling. I stare back and don’t even bother to reply. He blusters that he has to add Ondansetron to the prescription and I repeat I neither want nor need it. He looks at me as though he has picked me up on his shoe and I dare say my face isn’t any nicer. My laser stare wins, I am plugged in and off I go. The actual treatment takes 30 minutes so even with the needle insertion and flushing of the port, the treatment should take no more than an hour. I ask the nurse whether there are very few patients on this treatment as that would explain his uncertainty but she tells me that they have quite a lot of patients on Kadcyla so why he’s been faffing around, I really don’t know. Chemo is finished and a flush is put up but on an incredibly slow drip. After 20 minutes I grab another nurse and beg her to take it down. I am done. It’s all fine. 2 of the nurses urge me to make a complaint. I explain I don’t wish to complain about them as they are doing a great job but they insist I should and that they will not take it personally. It’s next on my list today. We leave the unit at 4.30, 5 and a half hours after I arrived for a 30 minute treatment. I feel exhausted, wired and just want to get home.
Driving away from the hospital we are almost immediately in countryside which is really quite soothing. It’s a very different drive from the one home from Charing Cross. I see a sign advertising guinea pigs for sale at £9 each. I tell Mr Mason “Guinea pigs for sale, £9 a kilo”. “Really?” he says but I can’t keep the cruel joke up and tell him it’s really £9 each. Then it sets us off wondering whether it would be better value if it were per kilo. It depends on whether you are going to eat them, I suppose.
This week we have been doing lots of running around and chasing things. Archie still keeps putting my head in his mouth and when Mum strokes me, she says “You’re soaking” because he drools on me and makes my head wet. I don’t think he wants to eat me, though. He likes biting my knees, too, but they are tickly and make me kick him.
We went to Gibraltar Point and I saw 6 bees, 4 butterflies and hundreds of ants. There were some really good smells but we had to stay on our leads in case we ate the baby birds and that wasn’t so much fun. When we got back to the car, Archie and I pretended we didn’t want water until Mum had thrown it away and then we started panting so she had to pour out some more and then we drank it. She thought it was a great joke.
The exercise man came to see Mum again. Why she doesn’t just run around the garden and chase balls, I don’t know, but he is trying to help her keep moving. He gave her this thing that counts her steps so she can tell how much running around she does every day. I don’t know if the man knows but Mum doesn’t run anywhere so I don’t know if she’s cheating or not. I thought of a brilliant idea to help her. Every time she takes her shoes or slippers off, I take them quietly away and hide them all over the house and garden. Then when she gets up, she has to look for them so that makes her move more. I found a really good hiding place for one of her slippers, right underneath a bush in the garden but my Mum is so clever, she found it. She was very pleased because she said “Lark, you are a little so-and-so” which I think means she can’t think of enough good words to describe me.
Our garden is full of good stuff you can pick up and run around with. There is a pile of dead weeds, a wood pile, pegs and some stones but I found the bestest thing of all. It was black and like a big stone but it was very light so I could run around with it. Mum said “What have you got there, Lark?” as she is always impressed by what I find. She said it was charcoal and it’s the most brilliant thing. It makes my teeth black and I can get it on my forehead if I try. It tastes odd but I like it. I have sneaked it into the house and put in my bed upstairs. It is one of my treasures.
I am also becoming a bit of an artist. There are lots of nice things in the house and garden but some need a bit of an artist’s touch so I have decided to help Mum by giving them what I call ‘the Lark Touch’. Mostly done with my teeth, I have single-handedly made the garden hose reel a bit more modern with a twisted look to the casing and have removed the central part of the handle. It looks so much better and I am sure Mum will be very pleased when she sees it. I really am her little so-and-so.
My brain tells me that if I am officially ‘better’ on paper then I should feel better. The fact that I feel as tired as before and now have a lurking pain beneath my ribs on the right side (not that there’s a wrong side) is just plain wrong but there you go; that’s life. This week I have an appointment with Aaron, my Macmillan trainer who comes to give me a pedometer. After a walk to Gibraltar Point, it’s a bit depressing to see I have only walked 635 steps. But I know I’m not really well. I feel cold all day and when I go to bed early, find my temperature is over 38.0 which officially means a call to the hospital. I don’t feel in an obliging mood, though, so decide to watch something trashy while I fall asleep and when I wake in the night, my temperature has dropped so I am OK. My temperature varies a lot, though. Officially, I am supposed to call the hospital if it drops below 36.0 or over 37.5 but that’s a really narrow band and my temperature often drops quite low, even if I’m feeling perfectly well. I think I’m generally a low temperature person. And it’s disappointing about the pedometer, too. Aaron tells me one of his clients straps her to one of her cats if she feels a bit down and enjoys reading the huge number of steps at the end of the day. I think I might try it with one of the animals here on the homestead. If only steps were as easy to do as writing words, I would be a marathon runner. I have a phone call from the lovely Cathy at St Barnabas Hospice in Louth who is going to refer me to the physiotherapist to see if she can help with my breathing and will also make an appointment for some sessions of Reiki which I am really looking forward to. It’s lovely to hear her tell me it will help with my pain and also relax me. I know about the relaxation part from previous experience and I have never tried it for pain before but I am optimistic.
At some point last week we go and buy some furniture. One of us is more reluctant than the other. Yes, you’ve guessed right! Mr Mason is not at all keen but I know where I want to buy it from and they have a sale on and we can go mid-week so we go in and find something we like. Hurrah! Even better than that, it is in the clearance section as it has been made to order and then cancelled. Once in the shop, of course, Mr Mason gets very enthusiastic over the purchase of sitting room furniture, especially 2 chairs which are about a chair and a half in size. I say they are a person and a dog in size which puts him off slightly. In the end we choose something simpler and I decide to buy some spare covers there and then so we will all be sorted. I think this was after we see the oncologist but time is so smudged in my mind that it all melts into one sticky pool of non-remembrance so let’s just say that’s when it was. No-one really cares. I am always fascinated by (usually) couples who are telling an anecdote and then get hung up on a time, date, place or whatever, even though it is irrelevant to the story. “it was on Thursday” “No, it was Wednesday”. “No, I remember it was Thursday because I went to collect the kids from Mum’s that day” “No, that was last week, don’t you remember? I know it was Wednesday because Bob at work was telling me this story about a bloke he knows at the pub and I told you when I got home and you thought it was hilarious”. “Oh, was that the story about the granny who tried to pick him up? I’m sure that was Friday, you know”. And so on it goes. So maybe it was after the oncologist, maybe it wasn’t and now we’ll never know the story of when a granny tried to pick up Bob’s friend in the pub.
The dogs are getting along better this week. Dog is still taking pride in getting the whole of Lark’s head in his mouth but she is starting to object and is doing more of the chasing. Her best defence is diving into any handy bush or hedge where he can’t get her and from there she can plan her next move in the game. She is keen on moving items of clothing (so embarrassing to find underwear strewn on the stairs – 3 odd socks and a pair of Mr Mason’s pants making it look like the world’s worst swinger’s party If we did swingers parties, we would do them like Heineken, of course) and it’s hard to find a pair of slippers. One is probably languishing in the garden and the other in her crate along with sundry stolen items. We were told before we moved that swingers have pampas grass in their front gardens as a sign to other swingers. I suppose they just knock on each other’s doors saying “Hello, I’m a swinger, too. Can I have a cup of tea?” or something. Imagine our distress to discover not only do we have pampas grass on the property but that it is in the back garden. What does that say in the Swingers’ handbook, I wonder? On second thoughts, I think I would rather not know.
So the music constantly playing in my head is this, of course.Sit back and enjoy Yakkety Sax by the great Boots Randolph.
This week is full on, as the Aussies say. We go to Lincoln to see what the new oncologist might be like and find that he seems calm, knowledgeable, straightforward and prepared to answer questions. This sounds good. One of my complaints is that I have not received a single result of ANY tests I have had done with Virgil since I started seeing him. This includes blood tests, tumour markers, Echocardiogram and CT scan. I have asked at the GP surgery, asked Virgil’s own secretary and also the chemotherapy nurses but they have just drawn a blank. He probably has the reports but hasn’t looked at them yet so no-one else can give me any information. This is thoughtless to say the very least. We agree between us that Dr Chaudhuri will take us on and that we will travel to Lincoln for treatment and to see him every 3 weeks. While I am drawing a deep breath of relief, he goes to see if he can see the results of any of my tests. Swappping to a new oncologist means new dates to see him and different treatment dates and they happen to fall right when I am going to the Penny Brohn Centre with Ms Marsden and Mrs Ure. It would mean I would get an evening and half a day before having to be picked up and brought back home again. I really love going to Penny Brohn but think this might actually be more stressful that just going along with the new dates. Just as we are musing on this, we are asked to go through to see the CT scan. He tells me there is a spot on my liver which is suspicious and I tell him this has come up over the last 2 years which he is pleased about because he didn’t think it warranted further investigation so he will look at the Charing Cross notes. He then whizzes around the chest area and there doesn’t appear to be much there. He says there are just a couple of small spots but that’s it. I ask about the 1cm lesion at the base of my right lung. “No,” he says, “there is barely anything there. I can hardly see it”. I begin to cry with shock and he says “This is good news!” which I knew but was finding it hard to take in. Apparently there are just a couple of small spots throughout both my lungs. My pleural effusion is resolving itself by thickening the lung wall in that place so there is very little fluid there not. All good news. We have found an apparently good oncologist AND had the best news we have had since I was diagnosed all in one day. I decide to ditch the morphine for one night and indulge in a glass of champagne which tastes wonderful. Apart from the offspring, we keep the information to ourselves for a couple of days. It is given moderately to Mr Mason’s parents in case they think I am cured. I don’t feel like shouting it from the rooftops. I feel it has given me probably another year or so which is wonderful but I am cautious in my optimism. It’s good news but that’s all it is for now, and I feel a lucky girl.
On Wednesday I have a really nice woman from Sheffield University come to talk to me about my blog and how I communicate my feelings about terminal illness. We have a really good chat about it which I enjoy immensely. I tell her she’s come on a good week and confide my good news to her which makes her cry. Always a good sign in a researcher, I think. She recorded our whole interview so some poor person has to transcribe it and then it will be analysed in the same way as the blog. She confessed she is reading the whole blog and sometimes laughing out loud at her desk when her fellow researchers might be reading something drier. It’s ultimately about communicating difficult news, I think, although I hope she will correct me if I’m wrong when she gets to this page.
The frustration is that I am trying to have separate pages on this blog. One for pictures of the house, one for Lark’s diary (she is a precocious little thing except in the matter of house training) etc and it’s not really working out. I checked out a few bits of information on different sites which all say it’s so EASY but they lie. If this blog appears odd or unusual, it’s because I am so tired i am actually falling asleep over it which is not good. So, this one is launched with no checking, no nothing. It appears red in tooth and claw. It’s hard to write when you can’t actually see the words properly as they keep moving all over the place. I still hope you enjoy it.
On Friday, Jan the cleaning lady comes and pushes the noisy vaccuum cleaner around but she also spends time rubbing my head which I like. Mum wasn’t feeling well so sat in her tippy-up chair under the apple tree with a blanket around her. She said she had done too much the day before. I sat under her chair and kept pushing her bottom when she wasn’t expecting it. Archie and I are trying to perfect our game of bitey-face and he doesn’t growl so much which is better as that scares me a bit. It’s quite easy to lose him in the garden as I can jump into a bush and he won’t see me if I lie still. Mum took a film of us playing and although I squealed a bit, I liked it really.
Today it is raining and Mum took me outside for 10 minutes in the rain to have a wee but it wasn’t nice out there so I waited until I got inside and before she had hung up my coat and lead, I had done a lovely big wee in the utility room. I don’t know what all the fuss is about. Everyone else (except Archie and the cats) goes to the toilet indoors. Perhaps I should start a campaign. Anyway, I am now in what Mum calls “The Dog House” and am sitting in the basket under her desk while she writes. Life is so confusing. Mum also says if this post doesn’t appear in the Lark’s Diary page she is going to give up. Give up what I am not sure.
Today Mum had to get up really early which she is not good at doing. Mark was going to a big place called London to do something called work. It’s very confusing having a Dad called Mark. If Mum shouts ” Lark, don’t do that!”, Mark always answers “What?” and then she says “I wasn’t talking to you, I was talking to the dog” and he says “Well, it sounded like you were talking to me”. We had People Coming which meant we had to be up and ready early. Today for my breakfast I had fish biscuits with proper tuna and a bowl of goat’s milk which is yummy. Mum gave Archie more than me but Archie wanted to eat my breakfast so I let him and I ate his. And they were puppy biscuits so he looks a bit silly.
A lady from Sheffield came to talk to Mum about her blog which apparently she liked a lot although they kept crying so I don’t know what all that was about. Then the gardener arrived which meant we had to bark like anything and my Mum said “stop it!” and the gardener said “Let them, it’s what they’re supposed to do!” Then he mowed the lawn which I didn’t like and then he sprayed some weeds. Mum asked if it was safe for animals and he said it was supposed to be so I tried some just in case and it tasted yucky. Then the woman from Sheffield had to go after she and Mum cried a bit more. Mum gave the gardener some water and I did a big wee in the kitchen which made Mum say “Lark!” but the gardener said it was because I had been in kennels and he cleaned the floor for Mum.
After lunch we went in the garden and Mum threw toys for us. I like my bunny best but also like monkey because he makes a lot of noise. One monkey doesn’t make any noise at all and that’s Archie’s favourite because I think he’s a bit scared of the other monkey. He tried to play bitey face with me and got my whole head in his mouth but I don’t like that very much so went and sat with my Mum. She started to read a book so me and Archie did some barking, pretending there was a fierce dog the other side of the hedge. Mum told me I was a bad influence, gave up reading and went to put some washing in the machine. I like helping her by carrying socks around the house although she seems obsessed with having 2 socks of the same colour all the time and I can’t remember what I’ve put where. Archie was not allowed in the house for a little while because Mum said he had Spanish bottom because he’d eaten too much grass. I don’t get it.
Later on we’re going to chase around the garden, taking back out toys Mum has just put indoors, then we’ll have supper and bed time. I like bed time because it means I can get right under the duvet and then after a little while Mum says “What’s that noise?” and I pop my head out from under the covers because I can hardly breathe and she says “You’re an idiot” and we go to sleep.
These days I am living in a world of perpetual exhaustion, fatigue, tiredness – call it what you will. Symptoms go like this. Go to bed at a very reasonable hour, between 9 and 10pm. Try reading for a few minutes but give up due to inability to focus. Wake up around 7am, still unable to focus and feeling very sleepy. Negotiate with self and sometimes Mr Mason about what time I will get up. Should I continue resting or should I get up and try and energise myself that way? Today we negotiate 10am as a getting up time followed by shower and getting dressed. My body cries out to go back to bed. I find it very hard to read anything as it is so difficult to focus my eyes. I sometimes feel slightly inebriated so if you ever get a message from me which is a bit weird, put it down to this strange fatigue because I will have written it when only half awake. The feeling inebriated part is so ironic in that I have not had a drink in months. My medication makes that a no-no but I also don’t actually feel like having a drink so to not remember what I did or said the previous night is a bit galling, to say the least.
Having got myself ready for the day, we head off for Sainsbury’s for exciting things like bleach and smoke detector batteries. One battery failed the other night leaving Dog in a state of high anxiety. He either cannot bear the noise the detector makes when it tells you the battery is failing or he has been in a fire before as he trembles and cries and this state usually lasts around 24 hours. On the way round the supermarket, I find myself a boyfriend of around 80 who needs help finding the right kind of rice. I love having conversations like this in supermarkets. Mr Mason doesn’t pick anyone up but buys some beer to cheer himself up. This is short-lived as he leaves the pound coin in the shopping trolley. On arriving home, we find next door are having their windows cleaned. Hurray! This was not a job I was looking forward to and knew it would not be Mr Mason who went up the ladder. Actually, I didn’t think it would be me, either, as the windows are very high and I am so unsteady and accident-prone. We nab them and they come round straight away and spruce us up, front and back for £20 which is brilliant. Dog and Lark decide they love the window cleaners in the garden but once they are up their ladders, they only want to bark and growl at them to show how fierce they are. I hope my training to not bark only extends to when we are in the house. Sometime while the windows are being cleaned there is a huge bang which knocks out the internet temporarily and sets off alarms in the village. There are occasional bangs from a gas gun to scare birds away from nearby fields but this is much louder and apparently in the sky. Hopefully it will be on the news this evening. We live an exciting life.
So, back to the fatigue. I am obviously at my desk and typing but boy, it’s hard to keep my eyes open. My choices are quite limited. I really understand the benefits of exercise in terms of increasing energy but I feel I’ve done that with my Sainsbury’s trip and a little play in the garden with the dogs. So what should I do? Sit on the sofa and try to read (through unfocused eyes) or watch tv or go to bed and sleep? If I do either I miss a lot of the day and I don’t like to do that. I have tried drinking Diet Coke and coffee which is not decaffeinated (which would be my usual brand of choice) but nothing seems to work and tiredness combined with pain can leave me tetchy and irritable. Painkillers also make me more tired, obviously, but it’s hard to pinpoint the exact cause of the fatigue. Is it cancer, Kadcyla, Fibromyalgia or something else? Knowing the cause probably isn’t going to help as there clearly is no solution; I just have to get on with it and manage it. But when the sun is shining, I really like to be out pottering around the garden. Maybe I’ll just drag my reflexologist’s chair out under the apple tree and have a doze there. It sounds better than sitting inside with the tv.
And I heard a brilliant joke the other day which amused me and I will leave you with. There were 2 cats trying to cross a river. One cat was called One Two Three and the other cat was called Un Deux Trois. Which cat do you think successfully made the crossing? It was One Two Three because Un Deux Troix cat sank. Enjoy, courtesy of Mr Tozer!