Monthly Archives: January 2015

Oranges ARE the only fruit

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At the weekend the attic is emptied. Firstly we are up at the crack of dawn as Mr and Mrs Safaie are flying back to Bangkok at 10am and have to leave at 6am. After this I go back to bed for a while having had a dose of Kadcyla the day before and feeling tired and a bit achey. Next it’s off to the vet with Dog who needs his claws clipping. The vet is always known as Dr Bum as usually the first thing he or she does is stick a thermometer up the bottom of whichever animal we have taken along. In case you are wondering, we do not refer to the vet as Dr Bum in the surgery. Dog is never keen on visiting Dr Bum and usually stands looking out of the window, his tail between his legs, plotting ways to escape as soon as the door is opened. By mistake the vet nurse charges me twice the going rate and now I have to go back to have the excess refunded on my card.

Once we get home, the house is thrown into a dusty, dirty turmoil of Things Being Brought Down From The Attic. Stuff that has lingered there for years and years gets to see the light of day. The breakfast room is piled high, courtesy of Mr Mason jnr, Ms Atherton and Mr Carter, all roped in to help with this most ghastly of exercises. A lot of things go to charity shops, a lot go to the tip and there still seems to be a neverending pile of stuff. We discover a lot of it belongs to Mrs Safaie from various times she has been living abroad. She hasn’t really had a proper home in the UK for several years now. I apologise if I make her sound like a dog. We are in the awkward position of having things to pack but no proper removal boxes because we haven’t exchanged contracts yet so can’t book the removal firm. We are also waiting to hear from our vendors as to whether they will reduce the price a little due to the amount of work which needs doing. So every day we throw a few more things into either a charity shop pile or a rubbish pile. It’s going down but it’s hard work.

This month’s Kadcyla treatment has gone better. Although I have headaches and pain in my neck, arm and shoulder, it is less than the last cycle which is really encouraging. I forget each time how tiring the treatment can be and wonder why I want to sit on the sofa and snooze in the afternoon. In my head I am normal and healthy; it’s just my body which doesn’t know this. Dog comes in for an accidental sloosh of Oramorph. Once the liquid gets so far down the bottle, it can be difficult to syringe out. I am sitting fiddling with it and, taking the syringe out of the bottle, press the top. A gloop of Oramorph shoots across the room and lands on Dog who looks most surprised. Luckily it is a tiny amount and he shows not the slightest interest in licking it, thus avoiding a lifetime of morphine addiction.

This week is also Orange Week. Through a local Facebook page, we have ordered 20kg organic blood oranges from Sicily. Before  you cry What Ho! at the amount, they are not all for us. We had a delivery of navel oranges before Christmas and it made me realise just how old some of the oranges in the shops must be. The amount of juice which comes out of these oranges is amazing and the taste is phenomenal. I am motoring through them at an immense rate  which is probably why I didn’t pick up the heavy cold Mrs Safaie came to us with last week. Hurrah for oranges and Vitamin C!

Apart from the endless sorting out and throwing away, it’s quite a quiet time, really. We are not socialising (no time or energy) and just have our heads down to complete work projects and tax returns on time. We do actually have a couple of social engagements in the diary, one of them a send-off lunch party hosted by our lovely friend Ms De Roeck. I know we can’t move such a distance without saying goodbye to people so we will undoubtedly do more of this once packing has commenced. On the subject of packing, we have had some fabulous offers from friends to come and help which has cheered me up enormously. I imagine we will get a bit of a party atmosphere going although I know some people (Ms Marsden springs to mind) have offered just for the opportunity to rifle through my drawers. Oo er missus!

Doing It All Wrong

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For those of you who are interested, the ghastly woman from the removal firm is not getting our business. The quote is significantly higher than that of the other company. I had so many texts and messages on Facebook imploring me not to give her our business, it made me smile. Things have been tougher this week, though. The side effects from Kadcyla don’t really go away. Or maybe it’s the peripheral neuropathy. Or the fibromyalgia. But something is causing me a lot of pain in my right arm and shoulder, to the extent that it wakes me up at night and stops me sleeping. I am reluctant to indulge in a lot of oramorph because, well, I just am, but this week makes it a bit of a necessity. The other cloud on the horizon is the pain in  my feet. This is almost certainly down to the peripheral neuropathy and the reflexologist who treats me on Friday tells me I have bruises on the soles of my feet. No wonder they hurt. This is very vexing as I have lots of things to do, mainly Throwing Things Away and pain in my feet makes it difficult to do anything except sit on the sofa with a wheatbag round my neck. What an attractive picture I paint.

On Saturday we have a spate of Throwing Things Away, supervised by Mr Mason jnr, during which we find editions of The Times in which the births of our 2 sprongs are announced, many old photographs and a couple of pairs of toddler’s plastic pants. We manage to rid ourselves of a lot of Star Wars toys, a huge collection of Brio and a lot of hi-fi equipment. The plastic pants go to the tip. (I can tell you which one if you want to go and rummage for them). I doubt plastic pants as such exist any more, technology in the pants department being what it is.

Having done so well in the throwing out department, I have a bit of a wobble on Sunday. I want to know the answer to unanswerable questions such as “How long have I got?” Being a lifelong planner, not knowing the answer to this kind of question is hard. Although I appreciate the impossibility of knowing the answers, I still yearn to know them  – as long as they are favourable, of course. At this point, the only people who truly understand what is going on in my head are other women in the same position – those also facing mortality and without prospect of a cure. Fortunately I am privileged to know such women and they send me messages which make me cry but also help to sort my head out. I suspect some of the wobble is due to trawling through the house contents and the memories things bring back and also the idea of leaving our home of 27 years and the city where we have lived for nearly 40 years. Don’t get me wrong, moving to a rural location is exactly what we want to do and I am sure it will be fantastic but it’s still a wrench to move away from somewhere so familiar.

On Monday I manage to speak to my cancer nurse specialist and she tells me I have been Doing It All Wrong. I have been cautious in my application of oromorph but apparently, I am taking too little to do me any good and I should be taking more. This is strangely comforting in that I am hopeful of a decent night’s sleep if I take it at the rate she is suggesting. This week I am back with the oncologist to see what she thinks of the side effects (if side effects they are) and also to have my third dose of Kadcyla – nearly £6,500 worth of drugs alone. A friend who has had around 16 doses of Kadcyla tells me her side effects grew less intrusive and intense as the course of treatment progressed. I am hoping this will be the same for me. Following the NHS review of drugs in the Cancer Drugs Fund, Kadcyla was not one of those removed due to excessive cost. This is reassuring for me but I still feel for those whose hope has just been deleted.

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A moving story

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Since the second diagnosis of the pesky cancer, I have noticed some people treating me differently. There was, of course, the young man who thought I was not allowed to order a sandwich and drink in a cafe without permission of my carers – Mr Mason and Mrs Safaie as seen in Carpe Diem Wotsit. When my legs and everything else give out and I’m confined to a wheelchair for trips out, the atttitude is even worse. It’s a real “Does she take sugar?” moment. Mrs Mason snr does this all the time, often asking if Mr Mason jnr (a First in Philosophy, a Masters degree with merit and working in the competitive world of SEO for the last 3 years) would like a drink, as though he is incapable of answering or deciding for himself. It’s a common enough experience which is rather new to me but very irritating when it happens in our own home…

Yesterday we have a visit from a representative of a removal company. When she arrives, I am on the phone to Mrs Safaie who can hear her shouting and screeching all the way in Northumberland. We decide to end the call as we cannot hear each other. The woman bursts in. I have no idea what her name is as she doesn’t introduce herself to me, the fairly bald woman sitting on the sofa under a blanket with feet up on a footstool. Firstly, she shrieks about Dog, making him leap about and get in the way. He is in his pyjamas which she finds hilarious and is the cue for more shrieking. Finally she makes it into the sitting room where she discovers me and calls me ” You in the corner”. My patience is already wearing thin and she has only been in the house for 2 minutes. “Are you ill?” she asks. “Yes, I’ve got cancer” I reply which sets her off on a voyage of “Am I allowed to ask that?” type exlamations together with explanations of why she wanted to know “So you don’t pick up a single box on the move”. I am not planning to. To my dismay, she takes a seat, still squealing over Dog who has decided he wants to lick her face. Now, I know where that tongue has been and there is no way it’s getting near my face but she clearly doesn’t realise this as she allows him to lick her. She is certain his pyjamas have been made out of someone’s old pyjamas. No, they have not. Why did God not make Dog fat enough so he wouldn’t need pyjamas? Dog would originally have come from the Sahara. There’s not a lot of call for pyjamas out there. She says she is going to steal Dog and could she have a cup of coffee? Is that alright? Is she allowed to ask for one? Mr Mason obliges.

She asks where we are going to move to. Mr Mason shows her the brochure. She goes into professional overdrive at this point, as though we have picked the quintessentially perfect house. She accompanies what I can only take as hyperbole with frequently opening her mouth widely as one in shock may do. Eventually, she decides she should look around the house to see how much stuff we have and how much it will take to move it. On this part she is at least thorough, opening cupboards and making comprehensive notes. When she returns to the sitting room (to sit down again, I am dismayed to see) she begins to tell us what we might term ‘no shit’ questions. Advising us to start eating what we have in the freezer – no shit! (You get the idea). We have 12 tins of dog food in the kitchen which will be eaten by Dog in 3 days or less. She advises us to stop buying dog food. And cleaning products. She has clearly got me marked down as someone who needs advice from a harpie. Perhaps if I had more hair she would be more respectful. By this point I have switched off so thoroughly I can’t wait for her to leave. It takes her 5 minutes to locate her car keys and then she exits left, shrieking.

Today we have a call from someone from the removal company asking whether she is good at her job. Hmmm. How to answer that. They also ask what other quotes we have had and who they are from as they are going to prepare our quote this evening. It seems to make her visit rather superfluous. Surely just one company could turn up and then everyone else should just base their quotes around that. The man from the other removal company couldn’t be more different in his approach. He arrives on time, comes in quietly, says hello and then walks around the house. He doesn’t open all the cupboards, nor does he have opinions around the amount of dog food or cleaning products we have. He is gone in 5 minutes without asking for a cup of coffee, insulting me or shrieking at Dog. Let’s see what the quotes bring.

 

God bless Kadcyla and all who sail in her

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I realise The Wedding has quite taken over my blogging (and rightly so) but I also realise there is a back story which hasn’t been updated. Yes, it’s back to the pesky cancer and all it throws at me. The Paclitaxel, as you may or may not recall, has caused peripheral neuropathy. This basically means the fine nerves are damaged leaving my little and ring fingers on both hands numb and unable to move properly. I say “I’ll cross my fingers for you” to friends in a blasé kind of way, secretly knowing that I can no longer cross my fingers on either hand. Of course, my right hand is the worst together with the numbness on the soles of my feet. It is quite strange walking when you can’t feel where your feet are going very well. So, when I go to see the nurse practitioner who is taking the place of my oncologist for 2 weeks, she is concerned about my hands and feet and decides she will not be able to prescribe Paclitaxel for me that day. It’s a bit of a blow because this is the third chemotherapy I have been on since June and I am reluctant to let it go. She is firm, though, and says if I continued to have Paclitaxel, my hands would eventually become useless and I may no longer be able to walk due to the numbness in my feet. I reluctantly agree. When I see the oncologist the following week, she is in agreement with the nurse and tells me I can no longer have any of the taxanes. I am now keen to move on to the next drug. Having Herceptin is not enough to keep the monster at bay.

Interwoven into this and the wedding story is the story of Us Moving. From the time I come out of hospital, we have the house on the market. The estate agency selling for us send their whole sales team to look at the house so they will know what they are selling. They troop around and all do a comedy double-take when they get to the main bedroom as I am in bed, bald, face swollen with steroids and unable to get up and be polite. I do smile, though. In the following weeks we have 40 different viewings, plus whatever they showed while we were away in Thailand. Some people are nice, some are rude (like the man heard in only the second room loudly asking the estate agent if he had anything else to show him) and some are plain bizarre. We knew one viewing was going to be cancelled because I saw the woman concerned look at the front of the house and say loudly “I don’t like it” to her companion. We have a family who are concerned about schools in the area. We sit on a boundary and the primary school our side has the best OFSTED results of all primary schools in our area but the school on the other side of the road has a more middle class intake. The woman has one child aged 4 in the nursery of the middle class school but knows siblings have not been taken in this academic year as there are too few places for them. She is pregnant now and is concerned that in 4.5 years time when her unborn child should be going to school, we cannot guarantee her child will get into the middle class school. I give her a look. No, she is serious. They visit our house 3 times, including a trip to our kind neighbours who allow them to go up and see their loft extension as they ‘cannot envisage it’ and then they collapse with a fit of the vapours and are never seen again. We reduce the price slightly. Mr Mason and I take a few days up in Lincolnshire to buy the 3 bird roast from the best game butcher we have found and when we come back, we find we have 11 viewings booked in just one day. This is something of a comedic day with people rushing through while Yakkety Sax, the Benny Hill theme tune, runs through my head. By the end of the afternoon we have an offer at the asking price. This is good but the estate agent suggests we wait to see whether any other offers materialise. Another offer also comes in at the asking price. One buyer has a considerably larger deposit than the other and the other buyer doesn’t want to bid more so we go with the bigger deposit, now called Buyer A. Ten days after we have accepted Buyer A’s bid and the whole shebang with solicitors etc has kicked off, Buyer B comes back with a much increased bid. Now, Buyer B is a lovely family and we had some nice chats with them but we think it is not fair that we drop Buyer A after everything has started up. Buyer B then drops a handwritten letter through the letterbox asking if we would reconsider as they love our house and want to live in it. This actually makes me cry, mostly with frustration. Had they made us an offer when they first saw the house or, indeed, come back with a higher offer immediately, they would probably be sitting down now, looking at the survey on the house and planning on where they would put their furniture. I don’t know why they didn’t do this. Probably life got in the way. So we are sticking with Buyer A and scratching our foreheads as to why our house was suddenly so popular.

So we sail on into the waters of Kadcyla (which could be a girl’s name), also known at TDM1. This drug is only provided by the Cancer Drugs Fund (as is Lapatanib, one of the ghastly pair that put me in hospital for a week) and has to be specially applied for due to its high cost. Apparently, 14 sessions cost £90,000. Although I only see the oncologist on Wednesday, she is clearly all over it like a rash (or a rat up a drainpipe – I am not sure which analogy she would like best) as I hear on Thursday that it has been approved and I will be given Kadcyla the next day. It’s one of those drugs where I have to be observed during and after and, of course, my blood pressure decides to play up and soars. I get sent home with a request to go to see my GP the following week. The side effects from the first dose are not too bad. I get a small headache and some pain in my upper body which I attribute to Vitamin D deficiency and ask for a blood test to check it. The pain is not due to Vitamin D, the results say. This is disappointing as that would have been curable very quickly. The second dose of Kadcyla gives me headaches which last for around 5 days. It feels as though I have the worst hangover of all time and nothing touches the pain until I resort to Oramorph. Once the headaches go, I am hit with muscle, bone and joint pain. This time, Oramorph does diddly squat, as I believe the young people say. Mr Mason makes me hot water bottles to hold against my back, my arms and other bits that hurt.

What upsets me the most is that some people will never have the opportunity to experience side effects like this because Kadcyla is one of the drugs the Government is poised to remove from the Cancer Drugs Fund. As I am already on the drug, I will be able to continue with it although it is a little unclear whether that will continue for as long as the drug is effective or for what is considered a course which is currently 14 cycles. As I have whizzed through several types of chemotherapy already, there are not that many more which are going to be suitable for me. Not one chemotherapy fits all sizes. But I digress slightly. There is a lot of argument about whether the Cancer Drugs Fund is a useful entity, whether it is ethical or whether the pharmaceutical companies are just making obscene profits from the drugs they produce. I don’t really want to get into that debate here but all I can think of is the woman (or man) who sees their oncologist just a week too late to get drugs they really need. If I didn’t have Kadcyla, I don’t know what my situation would be. Herceptin is not enough to keep this aggressive cancer at bay and seeing my oncologist a week or so after this drug was removed from my options would be one of the cruellest things I can imagine. Knowing it was there, that it existed, but that I could not have it. I still have people asking me how many sessions of chemo I have to have and when it will end. The answer to that question often brings surprise or shock and I hate answering it. Chemotherapy will end when it no longer works for me and no longer holds the cancer at bay. Horrible, isn’t it? And I really feel for those who will not even get the opportunity to try out the side effects of some of the more expensive drugs.

Elvis and the typhoon

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Following on from a lovely wedding (and how long ago that was and how slow I have been in blogging about it), we are excited to see Elvis is going to be making an appearance at dinner on Saturday evening. When I say excited, we smile and make all the right noises to the lovely Chinese lady who is in charge of Making Everything Run Smoothly and who drifts between tables at breakfast time, talking to guests. She tells us he is very good at some songs, implying he is not so good at others. The weather is not so good and there have been showers of rain, mostly when Mr Mason and I are walking slowly through the gardens having spotted what I thought was a gap in the rain. Apart from falling out of boats and being weak, one of the other side effects of the steroids I have been prescribed is to make my feet swell. The hot weather hasn’t helped and it gets to the point where I can barely fit into my flipflops. Walking barefoot is OK but there is a lot of coral on the sea bed and some of it seems to have made its way into the gardens making me shout loudly when I step on a piece. It hurts!

As the sun sets, we make our way to the restaurant to try to choose a table not too close to the makeshift stage. The excitement at seeing Elvis is slightly tamed by the fact that he is sitting behind the curtain of the stage but in full view of anyone crossing the garden, looking bored. Mr Mason jnr had a bad experience with Chinese Elvis some years ago. It was when Mr Mason jnr’s hair was long and blonde and he was thought to be a girl by some, including Chinese Elvis who, after failing to get his attention, laid his head on Mr Mason jnr’s shoulder and sang “Don’t be shy!” to our hilarity. It was a similar story in Egypt when a policeman would not let Mr Mason jnr into the men’s toilet but kept directing him to the ladies’. Whilst enjoying a massage in a northern region of Thailand, he was again thought to be a girl by the lady massaging him. Her companion tapped me on the leg and pointing at Mr Mason jnr said “Boy or girl?” When I responded, she laughed heartily, slapping her colleague. He was pursued in Venice by Italian boys who hissed at him and made kissing noises. The fact that he was wearing a Russian general’s overcoat at the time didn’t put them off. Although I digress, you can see why we chose tables away from the stage.

Thai Elvis is very chatty and tells both women and men that they are sexy. He is keen for audience participation and even takes requests although Mr Mason and his friend, Mr Giffin, ask for early songs due to their age and Elvis doesn’t always have the backing tracks. We are surprised to see there is a Mrs Elvis who has a tambourine and microphone and joins in enthusiastically. What Elvis really wants is for someone to duet with him and no-one on our table is going to take him up on this. After a few numbers, the rest of the wedding party arrive and with them some good souls who will participate. The wedding celebrant gets up and gives us a version of Suspicious Minds which we think is very brave. Elvis then wants some dancers to join him and so Mrs Safaie jnr gets up with 2 of her friends and they improvise a dance for Viva las Vegas! Click the Youtube link to see the result…

http://www.youtube.com/watch?v=75pU4xj8JBI

The following day is a bit of a worry. Some people are trying to go home when we hear there is a typhoon warning and all boats have been grounded (is that the right term?) which means getting back to the mainland to catch flights is going to be tricky. We spend time over breakfast wondering what will happen. The other topic of conversation is soft rock. We are not fans and the hotel plays soft rock constantly – a heady mix of Rod Stewart and Celine Dion. We think there may even be a track with them doing a duet and wonder why there is no health warning. Overdosing on soft rock can be serious, as you can see here. Mr Mason and Mr Giffin appear seriously affected.

http://www.youtube.com/watch?v=qBSIvyuAAZE

However, the skies blacken and the wind gets up. The hotel decides to run one boat to the mainland so people can get away but instead of the 45 minutes it normally takes, it takes over 2 hours and we are sent photos to see just how wet people got. Luckily we do not have to leave until the following day. We expect tropical downpours and thunder and lightning and are quite disappointed when this doesn’t materialise. No doubt this is a bit selfish as elsewhere people get a battering from the storm but we are spared. As you might expect, the journey back to Phuket the following day involves me getting on and off a boat and, yes, I fall into the water again and arrive back with wet trousers. It seems to be my forte. Perhaps it is even a skill. I can report that since the wedding and the cessation of taking steroids, my legs have recovered a lot of their strength and I suspect I could do a better job of getting onto a speed boat now. I’m not going to test the theory, though.

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