An update on the good news

As most of you will know, my last scan comes back pretty clear with no lesions to be seen and no fluid in my lungs. This is amazing and brilliant and certainly adds time onto my life. I know we’re not all cancer experts here so it seems worth a moment of clarity. I still have cancer. I will always have cancer and will need to have chemotherapy every 3 weeks until something else happens. Another story in the press today says Kadcyla is NOT going to be approved for the Cancer Drugs Fund which means I am OK until April 2016 when something else will happen.

At the moment I have pain in my ribs which triggers a doubling of my morphine and prospective tests to have a look to see what is going on. After the CT scan good news, we go out and buy a really nice new Egyptian Cotton duvet cover and sheets in duck egg blue. Once the rib pain really gets going, it seems as though we’ve brought it on by celebrating with new bedding. It’s the start of our week off – a week with no appointments or work. We think about going away for a few days and then decide to have a staycation – visiting the places we don’t know around us. The rib pain comes on gradually during the week and I have to seek more pain relief although it makes me slur and feel out of it. On the final day, I have an appointment with the optician who is a lovely young man from Manchester and we chat about all sorts of things as he has a sense of humour which matches mine. He quickly discovers my left eye has deteriorated more than my right and when he puts a correcting lens in, I can see properly and realise why I have been feeling so unsteady when walking around. I am now longing for my new, very expensive glasses when I shall see the world right again!

Without my diary to hand, I can’t say what day we do what but it doesn’t matter and I’m not going to argue with myself on a point of when we were somewhere. We go to Donna Nook to see the seals again as there are more there now. The carpark is overflowing and I know there are Disabled spaces so get out of the car to have a look. Now at this point, I must confess that Mr Mason and I call them Selfish spaces. Now I have a blue card, they come in jolly handy but the ‘Selfish’ tag came long ago when, in a car park, we found lotso of Disabled spaces empty. “Look” said Mr Mason, “The Disabled people can’t even be bothered to come and use their special parking spaces. How selfish”. Of course, he said it with tongue firmly wedged in cheek and now we have a blue badge, we call it our own Selfish badge. So, I set off round the car park, stick and selfish badge in hand, to see if there was a space available. Indeed there was but a car was just about to reverse into it. I approached the driver and said “Did you know this is a disabled space?” He didn’t like being approached at all and I should have taken a sharp, pointy stick with me but alas, my stick has a flat, rubber bit on the bottom. I might have to modify it…… Anyway, he tried to ignore me so I spoke to him again. “No, it’s not” he said. I pointed out the Disabled signs. “I can’t see them” he said, which made me think he may be blind and, therefore in need of a Selfish spot but equally should not be driving. I pointed out that there was a bay or 4 or 5 parking spaces. His wife was looking more uncomfortable by the moment. “Well,” he said, still not looking at me “I’ll take my chances” and reversed back into the space. I stood nearby, thinking I was not going to make this a comfortable experience for him but his wife couldn’t stand the strain and got out of the car, looking at the signs all along the fence, clearly showing it was a Selfish bay. She went quite red and got back into the car, gesticulating wildly and made him drive off. Not before his parting shot which, had Oscar Wilde still been alive, would have envied it. “Have you been here this week?” I thought about it. “No” I said, and away he drove, thinking ‘Take that, you selfish disabled person’.

The beach at Donna Nook is fantastic and has hundreds more seals than on our last visit. We walk up and down, listening to the pups crying for their mothers with an eerie “Mum! Mum!” call. I am sure one seal is due to give birth at any time and, of course, while we walk off, she does. But really, they are dropping them like crazy. I take a film of two mothers having fisticuffs over the ownership of a pup with Mr Mason talking in the background about how he is going to buy a sausage bap and a coffee. I’m sure it wasn’t this hard for David Attenbrough. There is also a video of a pup struggling through grass, not its natural medium, calling for its Mum. They sound incredibly like small children. Anyway, I’d like you to know that in downloading the baby seal video to this blog has almost made me give up the will to live. It is INCREDIBLY SLOW and we can do nothing else on the computers but sit around and sigh, poking a key or two every so often. It’s now at 96.6% and the excitement is overwhelming. If it doesn’t work (you can’t add video directly to a WordPress blog – it can only be through a link) you will hear me yelling and carrying on for miles.

But it takes me ages to write this blog because I am so, so tired. Whether it is the medication or I am just going through a tired phase, I don’t know but it means I have to finish this post here. Mr Mason is so patient while I try to write with my eyes closing and I’m not sure it all makes sense but he deserves a lot of credit for this one. A few nights’ good sleep and some fresh air will help enormously and this is why I am going to post without spell checking or anything else. Just hit the button and switch out the light. Good night.

 

Hedgehog heaven

We go to see the oncologist who is as cheerful as ever. He tells me that my tumour markers have risen slightly but that is over a 3 month period so he doesn’t know if they’ve jumped quickly or just gradually increased. More blood tests to find out. He also orders a CT scan so we can see what’s happening inside. My biggest problem, as ever is fatigue and the idea that I can do everything I want to without consequences. It’s like I forget every time and then spend a few days in bed recovering and dealing with the pain. My sleep has been weird, too, and I’m often awake for 4 hours or more in the night. It’s a good time to do Christmas shopping but I really would rather be asleep. I finish a couple of books, that way, too.

Chemo on Monday is a little different as Mr Mason is away at a  meeting in London. I have booked transport to the hospital which turns out to be a man in a car with casual racism and a dislike of anyone moving into the area. We find things to talk about on the journey although it does feel strange to be without Mr Mason, even though he is not allowed in the chemo suite. I am called in quite quickly which is a novelty and am soon plugged into my portacath. The woman next to me starts to feel unwell and goes red in the face. Her heart is hammering away, she says, so we call a nurse over. She is having a new treatment which I guess is Herceptin as it can have those effects, but I’m wrong. We fall into conversation and I tell her we have only recently moved to the area. She says she lived in London until 13 years ago. “Aren’t you glad to get away from all those ethnics?” she asks. I’m a bit taken back and explain that I think that’s the one thing Lincolnshire lacks. She says angrily that she was mugged and burgled before she moved away but she didn’t say the kind of people who did it. I agree that’s a horrible thing to happen to anyone but my experience had been quite different. It wasn’t all sunshine and roses but how we loved the diversity of food shops, being able to buy ingredients for pretty much any nationality and the great international community. Then I drop the bomb. “My son in law is Iranian” I say, “and here it’s more difficult to find ingredients to cook Iranian food whereas that wasn’t a problem in London”. She goes a funny colour and ends the conversation. I just like saying “My son in law” anyway.

There is a bit of kerfuffle about giving me Domperidone, the anti-sickness drug. It’s not been prescribed but I am used to asking for more when I need it and here, things are obviously done differently. The staff scurry around and come back from the pharmacy with the medication but unfortunately it’s been made out in a name similar to mine but not mine, therefore I cannot have it. I wait outside for the car driver who tells me he can’t leave until 2 other patients are ready. Eventually we depart at 3.15 and I sit in the back with a lady who, the driver tells me, “don’t speak any English”. Luckily I get dropped off first as the dogs have been on their own since 9am and will be going ballistic. They are mightily excited when I get in, jumping up as if they haven’t seen me for years and Lark has disgraced herself on the kitchen floor whilst Archie has held on. He does have an amazing bladder capacity, similar to that of Austin Powers.

The following day we take Lark to be spayed. She is wearing her new red jumper to keep her warm and walks into the vet’s surgery without a care in the world. They make a big fuss of her but when we leave her, she’s confused that she’s not coming with us and I spend the day worrying if she’ll be all right. Anaesthetising a sight hound is a different game to other types of dog due to their large chests (or so I’ve been told). We ring at 2pm and she is fine, lying on her back asking for her belly to be tickled and ready to come home. We go to collect her and she is clearly spaced out. Mr Mason has to pick her up to put her in the car and to get her out again. She goes straight to her crate and sleeps and sleeps, just waking to have tepid scrambled egg spooned into her little mouth. What a princess! Archie spends the day fretting over where his little sister is and gives her a good sniff when she comes home. It’s difficult for him because she can’t run around or wrestle with him and the first time she goes down stairs on her own she is hesitant and gives a little “Oooh” when she gets to the bottom, gravity getting the better of her. For the first couple of days she is clearly in pain but she soon starts to heal up. She doesn’t show much inclination to race around the garden yet. I suspect it feels tight where her stitches are but they come out this week so that should feel better and then they can have a celebratory race around the garden.

My new appointment with the speech therapist comes around and we head off to Lincoln County Hospital. When we get there, we just can’t find the right place so ask at reception. They point out that my appointment is at Louth Hospital. Sigh. I cannot be trusted these days to get anything right. I phone Louth and they say they will tell the therapist so we hit the road again and arrive at a hospital which is clearly old (for anyone in Ealing, think the original St Bernard’s) and therefore confusing in its layout. We ask a random woman at a clinic reception desk and she says “It’s by the entrance” which is rather unhelpful as there are lots of buildings clustered around the entrance. We rush off and eventually find the place which I am sure is in the same building as a clinic entitled Sexual Diseases. Luckily our therapist is in reception at the same time as us and ushers us into her office, even though we are 40 minutes late. She is brilliant, taking notes and giving me tips on how not to choke when I am eating and drinking. We make another appointment for a couple of weeks’ time in Horncastle which is much nearer to us. She thinks I should be seeing an ENT specialist, too, so she asks my GP to refer me to one and will be working on my voice, my swallowing and eating.

The following day we go off to collect our hedgehogs. I didn’t think we’d be able to home any this year as we left it rather late to offer but the hedgehog lady called and has a mum and 3 babies for us. When we get there, she also has a lone hedgehog called Linda who tried to hibernate in a pub cellar. The rescue centre is a warren of buildings with washing lines full of towels drying. And it smells! We once had a hedgehog who came into the conservatory back in Ealing. It hid away and every time we went into the conservatory, it defecated in fear. We had forgotten the smell! The woman who helps us is clearly devoted to hedgehogs and dogs. She brings the mum and babies out first, telling us the mum was savaged by a badger. She was with them for 3 weeks and when they went to clean her out one morning, found she had 3 baby hedgehogs with her. Clearly uninhibited, she would lie on her back suckling her babies and didn’t mind who came to have a look. I suddenly think, stupidly, that we haven’t brought anything to put the hedgehogs in but we are given a little wooden house with 2 rooms, one with mum and babies snuggled into a towel and the other with a messy white towel where the entrance is. We are told the hedgehogs like the smell so they don’t get cleaned out, as such, but poo is removed and that’s that. Mr Mason will clearly be on poo duty yet again. We are also given Linda in a separate house and told she will likely leave us quickly. The babies might also go as they have been born in captivity and don’t know what the world is like but will probably be very curious. We put them into the car, hoping they won’t prove curious as we are driving home and the dogs look aghast as the smell hits them. They look at each other, silently blaming the other. Back at home we put them in the hedgehog hotel we have built and provide food and water and leave them to it, not before taking a quick peek, though.

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So these are the latest members of the Mason household; Linda, Hilde, Athelstan, Wulfrun and Ethelfrida, all good Viking names (apart from Linda, obviously), in honour of the Viking heritage here.

Finally, if you have spare time on your hands, you might like to make this delightful mobile I saw in a magazine at the Hospital. It will amaze your friends and make them green with envy. All you need is a plastic basket lid and the lids from air fresheners, apparently. It is truly unique.

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Insomniac Identifies Owls

I am back on the sleepless cycle of chemo. Lately it seems to be going like this. First few days feeling achey and tired. Next few days feeling pretty OK. Next few days feeling really tired, eyes heavy, body feeling like lead but unable to sleep for more than 2 hours at a time. For the first couple of nights, this is OK. I read my book, catch up on emails and think about Christmas shopping. OK, I’m a planner. So shoot me. Last week before chemo is a mix of first two weeks with random nausea, headaches and pain. I get pain from fibromyalgia and then pain from cancer. A new pain is in the site of where my breast was removed. It feels like the muscles are tired, just like the rest of me. Then it all starts again. If that all sounds a bit gloomy, I’m not complaining. My drug of choice, Kadcyla, has been removed from the Cancer Drugs Fund so I consider myself lucky to be receiving it every 3 weeks unlike some other women who need it but cannot have it. If I were in their position, yes, I would be complaining, loud and long. The trouble is, I don’t think anyone would be too interested, outside the cancer charities and cancer patients and families. My oncologist thinks I should drop the final dose of Oramorph I have in the evening by taking my night time dose later. This can be achieved, he posits, by setting an alarm to wake myself up. I give him a look which I hope is withering. Telling someone with sleep problems that once they are asleep they should wake themselves up is just madness, and dangerous (for the teller). The nurse at the Hospice thinks I should take what I want, when I want it and stuff the oncologist. I like her attitude.

Lying awake in the wee small hours allows me to home in on owl sounds and I can now identify 3 different types of owl we have here. The barn owl, the tawny owl and the little owl. The barn owl shrieks loudly whilst the tawny owl is the one that goes toowit toowoo. Is that how you spell it? Any owls reading this, please feel free to let me know. The little owls are, not surprisingly, a little quieter. This morning, just before 5am, a barn owl is doing a real number outside our window and when I get up to look, I am lucky enough to see him swooping around in front of the house. It’s a bit different from the foxes who used to shriek at us when we were in London and infinitely more pleasurable. I haven’t been able to identify the bats yet.

Following on from my last post when I was definitely not feeling great, I am certainly feeling better. Just as suddenly as the gloom hit me, the sunnier side of my nature comes forth and I feel relaxed and back to my old self. What has shifted? I really don’t know. I wake up on Saturday and decide we will have a day out. We take the dogs to the woods to collect kindling, have lunch at a brilliant pub and then stock up on meat at our favourite farm shop. Finally, we go to Horncastle to look at an antique shop where we think our upcycling man has moved to. Not only are his things there but so is he so I am able to show him photos of his trumpet wall lights which we have had installed in our bedroom. We absolutely love them and I have an idea he could make us a central light with 3 or 4 trumpets on it to finish the room off. He is keen and we talk about the possibility of sourcing the trumpets and design. I also mention a friend who is planning something special for her husband’s birthday next year and is sensibly thinking ahead. Finally, I buy a euphonium which has been made into a floor light and which is fabulous. He gives us a very good price (as his wife did when we bought the trumpet lights) and Mr Mason carries it out of the shop to much interest. We come home and I have a snooze during which time Mr Mason puts the euphonium light where I suggest it would look best and it looks great. I love the idea of recycling and upcycling, too. Making something new and fresh out of old stuff. He shows us in the shop an old farm implement he has made into a floor lamp. Now it is rescued and in use rather than just rotting away after years of service so he has an interest in protecting our heritage of lots of old things, from farm implements to cylinder vacuum cleaners (which also make spectacular floor lights).

Heading off to my long awaited appointment with the Speech Therapist on Tuesday so she can help with my voice, I receive a call to say the therapist is not at work that day. We are almost at Lincoln by the time we get the phone call having left the house at 8am to make a 9.15 appointment. To say I am disappointed is an understatement. I have had a different voice for over a year. It’s higher pitched and has a lot less intensity. I can’t sing. Sometimes I speak in what I call two-tone – two notes at once come out and it sounds really weird. People in shops can’t hear me, people on the phone can’t hear me. They ask if I have a sore throat or blame it on a bad line but I don’t have the breath to project my voice. It is very frustrating so my disappointment at a second cancellation is great. Instead we go to the woods really early, surprising the dogs who are thinking they are in for a day in the car. They love it until they meet an un-neutered Husky running at full pelt around a corner. Dog immediately gets protective over his un-spayed sister and shows his teeth, a rare occurrence but when he does it, he means it. All dogs are put on leads and owners stand around talking sensibly about dog behaviour. I am unsure exactly why Dog takes such offence until Mr Mason explains to me the other dog has a huge erection. Aah, that explains it!

I now have another appointment with the therapist on 8th October so not too long to wait now. If she can’t help with exercises, I will probably have to have an injection in my vocal chord to plump it up a little. Although the other side has been taking on the work of both, some days I sound like my voice is going to give out altogether. How will I sing Christmas Carols around the tree in the village? There are not that many of us so miming is out of the question. In a Midsomer village such as ours, there are bound to be a few singers of the entertaining type; those with an operatic bent, perhaps. If we’re lucky. I could stand behind him/her although I am usually ushered to the front of any event like this due to my stature. Hmmm. Something to work on, unless the therapist works her magic quickly. We like to indulge in village activities (although we will draw a veil over the Mediaeval Bolinbroke event when I was sent sprawling at the feet of complete strangers by Dog) and tomorrow is Macmillan’s Coffee Morning in the Village Hall so we will go to that. Already a couple of our neighbours have said they are going so it should be an opportunity for cake and gossip and meeting up with my Macmillan trainer, Aaron, who decides this is the perfect day to visit me.

I know it’s Pinktober coming up and there seem to be very mixed feelings about it. Charities have to adopt a dual approach. They support their client group, whoever it is and they have to raise funds to do it. Fundraising has to be fun and popular as otherwise, people would not do it.Client groups, on the other hand, often hate these initiatives with a passion as they don’t educate. Having worked in charities and now a cancer patient, I feel for both sides. Yes, the pinking of everything does nothing for me. I almost feel it is completely removed from me and my experience and yet if it wasn’t there at all, I wonder what would replace it? Playing silly games does not encourage you to check your breasts, testicles or any other parts of the body and in that sense, seems pointless and a little offensive. But I have to admit, I can’t get over excited over it. I understand my role to be to educate and work with the charities so they understand my point of view and so I can share my experience with both their staff and any other cancer patients who are interested to hear it. Smaller, less well-known charities than Macmillan (Bliss, for example, a charity that works with familes who have sick or premature babies) use any opportunity to raise their profile be it a buggy walk or baking cakes. Baking cakes doesn’t have much to do with the distress of bringing a baby into the world 10 weeks early but it does increase knowledge about where to go if you need that kind of information and also to raise funds for such a worthy cause. So I cheer on the people raising funds in October, want to educate those playing online games and keep  my head down. Most people in the village know I have cancer and ask openly about how I’m getting on. That’s my opportunity to do a little education right there and then and then they are on their way, hopefully asking themselves questions and better informed. We can’t do everything in one sweep but we are moving forward. I’ve been asked by a project working with Macmillan to speak to GPs about my experience, especially that of being reassured I did not have cancer when, in fact, I had one of the most aggressive breast cancers. That’s definitely in my skill set and I look forward to doing it.

Guinea pigs, £9 per kilo

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.

A world of fatigue

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!

Increasing pack size

Each week seems to get busier and busier. Instead of lounging in the garden, we have appointments, workmen and all sorts of admin to catch up with as well as continuing to unpack boxes. We have some new bookcases arrive which means emptying of more boxes which is good but also rather tiresome. It’s a job Mr Mason has taken on and is doing it well. The roof is finally finished. Alex and Dale come over to put the chimney pots on with the reknowned lime mortar. The weather is fickle and goes from sunny to windy with a hint of rain and they are concerned about the lime mortar setting well. They sit in the van for a while to see what the weather will do and then announce it will be OK, they have actually finished. There is a lot of chat as we thank them and they thank us for the work. Off they go in the van and half an hour later a huge storm crashes overhead with thunder, lightning and hale – the whole works. Suddenly their little white van re-appears and they rush up ladders with a tarpaulin while the rain lashes down. They were a few miles away and were worried that the storm would damage the lime mortar so, even though they had finished, back they came. They come down the ladders wet but smiling. The lime mortar has set sufficiently so the rain will not be a problem but I am rather blown away by their attitude. Having finished a job, they worry about the storm sufficiently to come back and make sure everything is OK. It’s an excellent service and not one I can imagine happening in many places. Another tick for Lincolnshire attitude.

I am still investigating the support network for cancer patients in the area. In London, it was pretty straightforward. There was the wonderful Maggie Centre at Charing Cross and I had a dedicated Macmillan secondary cancer nurse. There was also the Mulberry Centre at the West Middlesex Hospital where I could have massages or reflexology. The Mulberry Centre was a bit strange. The treatments were fine but it wasn’t the sort of place you could go in and just relax. The volunteers who staffed it were very eager and wanted to know why you were there and to engage you in conversation. I never found it a good place to go for anything except reflexology or massage. One member of staff got rather obsessed with Dog and would insist on coming to see him if he was in the car. He had to be brought out so she could shriek over him. What is it with people who shriek at dogs? They don’t like it. Here, there isn’t an obvious place to go so I reluctantly get in touch with the local Macmillan nurse who, as you will know, turns out to be marvellous. She is really intent on getting me hooked up with everyone so when I need something, I will know who to go to. I get a call from the local hospice who make me an appointment so I can go and be assessed. They provide all kinds of complementary therapies including breathing classes (which I think might be really useful), a choir and Reiki. I sit down to fill in the form I am sent and immediately it sends me into a dark place. So many questions I don’t want to answer about how I feel physically, emotionally and spiritually. Half way through it, I give up and go and help Mr Mason with the books, so depressing does it feel.

In fact, while I think of it, there has been a very black streak running through the whole week. I have decided to do lots of admin which means I can be productive whilst sitting down. Some of this is just letting people know of our new address and some of it is looking at finances and pensions. It’s the pension bit that I find hard. I have to make sure Mr Mason is nominated to receive my pension in the event of my death but then there are the new rules which came in last year meaning I can take some or all of my pension early. This means there are lots of conversations and emails discussing my health and forthcoming death, whenever that might be. I am desperate that Mr Mason is left in a good position financially and that there is nothing messy or complicated for him to be dealing with when the time comes. I hate thinking about it and there are quite a few tears. Luckily there are boxes of tissues in just about every room in the house so I am well prepared. I decide to engage a financial adviser who has been recommended by Mrs Hurley and think I will hand the whole kit and caboodle over to her (the adviser, not Mrs Hurley) and she can help me find my way through what feels like a mine field. I eventually get back to the hospice form and complete it, shoving it back in the envelope and deciding not to look at it again. I also get a call from a nice man called Aaron who runs fitness classes and regimes for people with cancer. He even sounds fit (in the literal sense) over the phone and he will come and see me, assess me and then become my personal trainer,  helping me to do excercise which will benefit me, taking into account my health and maybe link me up with some groups. It sounds good. The community nurse also calls and asks if she can come over to introduce herself and explain what she does and what she can offer. Another strand in my support network. Very different to London but I am starting to feel more secure.

On Friday we go to see Virgil and he is still rather stressed. Maybe this is his style in which case I will have to hypnotise him to make him more laid back. He has had more information but still not really enough and the date I was given for an echo was not one I could make. He sighs quite a lot and then says aloud everything he is entering into the computer system. We drag out of him that I can have chemo at Pilgrim Hospital instead of going to Charing Cross which is actually quite a relief. I love seeing the people at Charing Cross and at Maggie’s but it’s so tiring going there and back in one day. He says he will see me in 3 months at which I raise my eyebrows and explain at Charing Cross I am seen by the oncologist every 3 weeks. He thinks again and then agrees he will also do this. I also query with Virgil why the stickers on my appointment slips still have my old address on. He waves it away, saying it’s fine. When I get home I find a letter redirected from our old address asking me to attend the appointment I have just been to. I also have a letter from Charing Cross addressed to me at our new address with a copy of my oncologist’s letter.I start to wonder how much experience he actually has but know I have the safety net of my previous oncologist to fall back on. He can’t get through to the chemotherapy suite on the phone so walks us round there – Mr Mason later says how impressed he was by my turn of speed – to find out what time my appointment will be. Apparently, although there was a slot on Wednesday available earlier, it has now gone. They can give me an appointment on Tuesday. I know my previous oncologist would have waited until the following week but I feel I have said enough about what my previous oncologist would have done so say it’s fine. The lady on the desk already knows who I am because she has just prepared a file for me and a pharmacist arrives and says “Oh, is this the lady on Kadcyla?” I am the only person in the hospital to be treated with this drug so I cause a bit of a stir. The staff are incredibly friendly and give us a card to put on our windscreen so we will not have to pay any parking charges when we visit the hospital. I just have to make an appointment at the GP’s to have my blood taken and we are all set.

I also have a very exciting appointment to attend. Before we got Dog, I had decided I would like a whippet. Then we saw Dog and were smitten so took him. He is a sighthound, like whippets, but distinctly bigger with his Saluki parentage. We decide before we move that we will get another dog. Mr Mason jnr always says to Dog “We’re going to get a better dog” which is a mean thing to say. We would normally get a dog from a rescue but with the way things are, we decide to buy one from a breeder. I research breeders carefully through the Kennel Club and find one in Louth who has been recently inspected and breeds whippets and deerhounds. I email to see if she has any whippet pups available and get a response saying they are expecting a litter later in the summer but have 2 9-month old puppies if we are interested in a slightly older dog. To me, this sounds perfect. The dogs will have been house-trained and have basic training so we make an appointment and go over to see them. First we catch sight of the deerhounds who are magnificent and have won prizes at Crufts etc. They are huge and simply stunning. Both the whippets are gorgeous and have different temperaments. One is cheeky and ready to jump into trouble at the first opportunity whilst the other is quieter and more shy. Dog pretends to ignore them while we walk about in their run. He wees on everything we can see and the cheeky one, Leia, is desperate to smell his bottom, so much so that I fear she will get a wet head. The other dog, Lark, is more reticent and sticks with her sister for a bit. After a while, they all calm down and do a bit of chasing around, a bit of woofing and a lot more sniffing. Dog seems quite happy with them and we then have a difficult decision to make. One dog is a brindle and the other is white with brown spots on. The breeder points out which is better from a showing point of view although she knows we are not going to show the dog. It is very tricky to decide. But I’m all blogged out so I’ll let you decide which one you would take with a sneak preview. Photos courtesy of their breeder, Sue.

 

Whippet pupsWhippet pups 2

Thunderbirds are go!

This week I hear a terrible story about Alex, our toothless roofer, and feel rather bad about myself for making jokes about him, albeit affectionately. Apparently a few years ago he was a taxi driver in another city and took a fare of a group of  young men. When they arrived at their destination, they ran off without paying and he gave chase. He caught up with them and they beat him senseless. stamping on his head and knocking many of his teeth out. He was so traumatised he couldn’t recognise the men the police paraded in front of him and didn’t even know if the man who was with him when the police arrived was helping him or was one of the attackers. Subsequently, on huge doses of pain killers, he became quite paranoid and left the city because he couldn’t stand the way he was feeling. He has sorted himself out to a large extent but I’m pretty sure he has PTSD by the way he behaves. He seems to have done a great job on the roof to the extent that he is obsessive about details eg “That pantile on the garage is set at a wrong angle and is driving me mad. Do you mind if I get up there and put it right?” So, I apologise profusely.

We also have a big date with the oncologist. The appointment letter says to go to the ante-natal reception and, sure enough, that’s where the clinic is being held. We sit amongst posters of mother and baby groups, how to wean your baby and loads of other baby-related paraphernalia and I think it is more than a little insensitive for the younger women there and it makes me think of my lovely friend, Ms De Roeck, who has had so much stress and heartache over this very subject. Chemotherapy can put you into an immediate early menopause so for women who are diagnosed young, this can be a double whammy. Depending on your hormone status, you may also need to have your ovaries removed. Putting women in an ante-natal clinic just seems stupid although I suspect it’s about using available space. It’s still stupid and insensitive, though. After the traditional wait, a tall Greek man calls me in, sits me down and shows me his badge with his name on. With a name like Virgil he is either Greek or a Thunderbird. After a bit of internet stalking, I discover he is probably Romanian. He says “What can I do for you?” and seems not to know why we are there. I explain about moving and wanting to change my care to Pilgrim Hospital and he shows me the file and letters he has. There are half a dozen pieces of paper in a folder and that seems to be about it. He has a letter from my GP, a list of my medication and an old letter from my oncologist. Clearly it’s going to be a challenge to sort everything out and at first he seems quite stressed and angry. Luckily I have taken my red book with me (the one that records every dose of chemotherapy you have including your latest blood tests) and I can fill him in on dates when I was taking one chemotherapy and dates when I had a break because I was too ill. He starts to relax when he realises I know quite a lot of detail about my medical history and as he works out a plan in his head. My next chemo session is scheduled for 13th May together with an echocardiogram (Herceptin and Kadcyla can both damage your heart so I need regular checks to see it’s functioning well) and he starts to think he may be able to give me chemotherapy at Pilgrim instead of travelling down to Charing Cross (“unless you want to” – in which case I’m not sure why we would be there). The only thing he says which disturbs me is “you cannot tolerate chemotherapy” and he lists those which have given me unacceptable side-effects. But Kadclya is surely a chemotherapy and there are others I haven’t tried. For a moment it makes me feel that the game is up – when Kadcyla fails me, it will all be over. But we’re not there yet and I would fight tooth and fragile nail to be prescribed something else. Once he calms down, I think I might like him. I need someone who will listen to me and think around the problem. He reminds me a bit of Dr Bossy and I wonder if he likes cakes as much. By the end of the meeting he has grabbed me by the shoulders (in an affectionate way – I still have my stick with me and, although he’s much bigger than me, I think I could take him) and suggested we meet in a week by which time he might have had more information. He thinks on the basis of what I have told him he would sign the prescription for me which sounds good.

We leave the hospital and immediately I feel as though I can’t breathe. I am trying to gulp in huge amounts of air and failing to stop so I concentrate on breathing out. It’s like a panic attack and I wonder how much worry has been sloshing around in my subconscious about this meeting. Eventually I get my breathing and crying under control anf for a special treat, Mr Mason takes me to Matalan to buy a storage unit for the bathroom. He knows how to show a girl a good time. I feel things are starting to come together both medically and with the house. Over the weekend I spend a huge amount on bookcases which will help sort out the other, bigger, sitting room. Alex should finish his work this week and in a way, I’ll be sorry to see him go. His stories are amazing and, although he likes to repeat them endlessly, I now feel I have a little more tolerance knowing something of his background. And I’m secretly hoping that Virgil is also a part-time Thunderbird.