Tag Archives: Kadcyla side effects

Brian’s Dirty Pickles

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My memory continues to be poor only this time it shocks even me. The oncologist is going on holiday. Normally, he tells us, he takes action holidays (and he does say action rather than activity, creating a picture of a mild-mannered James Bond with a shock of black hair which must have been the bane of his mother’s life), but this time, they are going to Greece for a week. I think it is Crete or maybe Rhodes but certainly one of the bigger islands that we have been to and I wonder whether it will still be warm enough at that time of year. I remember taking the children to Greece in the autumn half-term and we had terrific storms over night. I think this is also the holiday where I warn them to be careful when walking at night so that they don’t fall over as the path to our apartment has lots of loose stones on it. Of course, as I am telling them this, I am also looking at the amazing night sky and inevitably fall over, coming down hard on one knee, necessitating a bag of frozen peas to be applied as often as possible and restricting the flexibility of my knee for the whole holiday. Sigh. Sod’s law, of course.

So, back to the memory failure. With Dr Chaudhuri taking his holiday when I would normally see him, I just have to get my blood taken at the end of the preceding week. On Saturday, I look in my diary to see I have chemo on the following Monday. It then sinks in that I have entirely forgotten to have bloods taken and feel like a complete waste of space. Sometimes, however, I just think things can’t go much worse so just whistle a happy tune and decide to arrive at the hospital early on the Monday morning. I thought that 8.45 would see the blood clinic fairly empty but the ageing population of Lincoln are made of sterner stuff and arrive in droves, packing the room out. This is not part of my clever plan. I decide to brave the filthy looks of everybody waiting and go through to see the phlebotomists who I have always found incredibly kind. I explain briefly about my brain mis-function and the cheerful lady says she will ‘do me’ straight away. “You’ve got a lot to think about” she says as I berate my stupidity. Some days a little kindness can go an awfully long way. I don’t have to wait an age for the chemo to arrive from pharmacy, either, so we are finished by early afternoon.

The following day is another hospital day with a CT scan which I am not looking forward to. The nurse manages admirably to insert the canula, especially as my Best Vein has been used only the day before. Every scan is a horrible reminder about what is really going on. Sometimes I can almost forget I have cancer, even though there is always a physical reminder in terms of exhaustion, fatigue, lots of drugs to take, itchiness and, of course, loss of a body part. Speaking of the loss of body part, I am getting rather fed up with the breaking down of the scar on a regular basis. I think I have complained on here before but it doesn’t seem to matter what I do, my camisole or bra always shows a little blood or weepy stuff on it by the end of the day. But it’s the scans that remind me exactly what illness I have. The scary one. The big C. The scan goes well with cheerful staff and black humour amongst the patients and then we’re off to go and buy more garden equipment that will chop up logs with ease. I am resisting the idea of a chainsaw but am not sure how long I can hold out.

On Wednesday we are off to Gainsborough so I can speak to the members of West Lindsey CCG about my experience of cancer. I have managed to hook up with a fabulous woman called Clare who works for an organisation called Development Plus in the Early Presentation of Cancer programme. Read all about it through the link but one of the aims is to discuss early presentation symptoms to GPs and this is where I come in. We have been discussing and thinking about what I might do for a little while and the invitation extended by the CCG is just too good to turn down. Looking at their CVs, about half are clinicians with the rest coming from all areas of the community including an ex-Deputy Chief Inspector. I don’t like to think in detail about what I am going to say. It ruins the surprise (for me) and I feel I speak much better off the cuff. With my memory fiasco earlier on, I ask Mr Mason about 20 times what the subject is. Clare also helps by saying “It’s whatever you want it to be about”. I have put on makeup for the occasion which means, obviously, that I will not cry.  Ha ha ha. I have 20 minutes and by about 5 minutes in, the first fat tears roll down my face. Tissues are passed discreetly around the board room table and water is poured. I scrub at my face and determine to continue, whatever. As I near the end, having forgotten to check the time on my watch when I started, I ask if there are any questions or comments people would like to make. There is a genuinely stunned silence with sniffles and everything. I have reached them. I have touched them. I have told them where there were learning opportunities which were missed and where well-meaning acts went horribly wrong. I explained what it’s like to feel patronised, to feel like you’re on a conveyor belt and, hopefully most of all, what it’s like to live with secondary cancer. I make sure I have explained the symptoms of Inflammatory Breast Cancer, MY pesky little cancer, which starts off small, looking like something which is all too often recognised as benign – an insect bite, mastitis, something that can be treated with antibiotics – before it reveals its true aggressive nature. I receive comments of hope and congratulation on my way out. We go and have a cup of coffee to soothe our nerves and then Mr Mason and I go and buy me a hugely expensive DuBarry tweed jacket for Christmas and I treat myself to a beautiful, butter-soft leather DuBarry shoulder bag. I feel I have earned it but realise this is just a one-off or we will be bankrupt before next year.

On Thursday we go and pick up Ms Marsden from the station. As we pull to a stop, Dog spots her and his tail bangs vigorously against the boot in a canine welcoming dance.We are planning to hit Hemswell Cliff, the huge antique centre built on an old airfield the following day and steel ourselves for an overwhelming array of antiques and gew gaws from various ages and various prices. It’s lovely to see Ms Marsden as we just fall into conversation as though we were just talking the previous day. She arrives with some wonderful treats – Hotel Chocolat biscuits amongst other things. It’s been a long week for me already so I check out quite early leaving her and Mr Mason to put the world to rights.The shops on Friday are actually quite quiet and we manage to navigate our way around for at least  5 minutes before I find a diamond ring I like. We also pick up a beautiful copper log box and an old brass chestnut roaster so we can roast them over an open fire. Hmm, I think we could write a popular seasonal song about that! There is a pretty silver and rose gold ring which Ms Marsden likes and as I have forgotten her birthday (brain like a seive) I buy it for her, despite her protestations. It suits her. We like lots of furniture but it doesn’t all suit our homes so we just come home with those three pieces, worn out but happy. Ms Marsden jumps up and down, fetching me drinks and snacks. Mr Mason smokes some fish and comes up with a very decent version of kedgeree which is delicious. Once I have eaten, I have to pack myself off to bed as I’m unable to keep my eyes open.

The following morning, a florist’s van draws up with a beautiful bouquet for me from the CCG I talked to on Thursday. I am very touched, particularly by the thoughtful card which reads “The CCG team was really affected by what you said on 28th. The courage, fortitude but at the same time your pragmatic light touch to the challenges you face was humbling. With sincere thanks xx” I’m so glad it made sense to them and, hopefully, a difference.

We drive out to see the seals who have come in to give birth to their pups at Donna Nook, not that far from us. After we arrive, we see lots of people kitted out with super long lenses and binoculars and I wonder if we’ll be marked out as the newbies who turn up expecting to see seals with their own eyes. Well ha! in the face of those sceptics! We see seals aplenty and watch the bulls square up to each other making the most eerie noise. And boy, can they move on land! Even at my fittest I don’t think I could outrun a seal. I’m ashamed to say we are so excited to see them that I forget which kind they were but I think they are grey seals and really worth visiting. The car park is pretty full when we pull in and the only space left is a disabled one, which, as you know, is wider than most. A woman comes running up and asks very nicely but in a head-waggling way and with her voice pitched higher than normal if we would move the car over so she can squeeze in? I tell her it’s a disabled space and she looks at me, crestfallen, saying “Is it?” like I was a 5 year old who has filled his pants inauspiciiously. Later on, we see her on the walk and she looks at me pityingly when she sees my stick. I don’t even bare my teeth. Some days even the nicest people just get on your tit(s).

On the way to Donna Nook I point out a shop to Ms Marsden called Brian’s Pickles. As far as we can tell over several years, Brian does nothing but pickle. He has told us his pickles are requested in the highest circles and the finest hotels. They are bought for society events etc etc and seems generally a nice chap. Early one morning when I was awake when I shouldn’t have been, I found Brian’s Pickles Health Rating on the internet. 5 being the cleanest of establishments, Brian scores a lowly 1. This gives rise to speculation in the car as to what Brian is missing to get that all important 2 or, conversely, what he does or does not do to merit such a low score. Not washing hands? Not washing jars? We are mystified but feel better than possibly the higher echelons of society who always crave Brian’s Pickles.

It’s taken ages to get this blog down as I’m spending increasing time in bed feeling exhausted and in general pain. I try not to take the extra morphine available to me but I don’t want to live in bed, either. I just want it all to stop and go away. Cancer, I’m having none of you. You can fuck off and pester someone else although I can’t think who deserves it, either. Cancer, go and eat a jar of Brian’s Pickles and see how you feel then. A taste of your own medicine, perhaps.

Hedgehog heaven

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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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The great Hula Hoop scandal and Mr Mason’s allergy

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This week I am off to a meeting at the LSE in London, my first proper trip on my own for ages. Strangely I feel a little anxious although I’ve travelled on trains and planes by myself many, many times. I suppose this time I feel vulnerable doing it on my own. I am very tired, I do get very unsteady on my feet and it’s sometimes very difficult even to keep my eyes open so I suppose my feelings are not surprising. Mr Mason gets up early with me and drives me to Boston station. On the way we see a schoolboy apparently waiting for the school bus. “Everything he’s got on is too big for him” Mr Mason observes. “Yes”, I say, “even his ears”. “He’ll grow into them” Mr Mason reassures me. We leave Alex and the boys at the house still working on the roof and chimney. Alex tells me proudly how he drinks 9 or 10 cans of full-fat Coke every day. This may explain his cheeky grin revealing black stumps. He really is a nice man, though. The train is on time and we get to Grantham and I have to change sides but luckily there is a lift. I have decided on the brave step of taking the tube which is something I haven’t done for months. Although it’s only 2 stops from Kings Cross to Holborn, a lovely man stands up to give me his seat without the need to whack or poke him with my stick. I know it’s a digression (and I am Queen of those) but we have experienced genuine kindness from some people since we moved. Don’t get me wrong; I don’t think Lincolnshire is filled with saintly people or that London is a den of thieves but 2 things happened recently which really touched us. Firstly, I have to be cryptic about this first story or the perpetrator would get into trouble. You will remember the trouble we had in having certain services fitted when we first moved in. Well, having Alex and his team on the roof meant that something was moved which meant something in the house didn’t work. The engineer who came had left his mobile number in case anything went wrong so we called him and he was with us within a couple of hours, fixing the problem. He told us that if it happened again, to ring him but that he was going on holiday the following week so if we had a problem then, ring the company directly but not to mention he had been round. We asked what we owed him. Nothing. He was just doing it in his own time because he wants things to be right and if we called the company they would charge us a minimum of £65 each time. So this is not a scam or money-making scheme. He doesn’t want money, he just wants to do a good job. He will do this for 3 months from the date he did the installation and then it’s over to the company. The second kind deed was when Mr Mason went to get petrol. There is a family-owned petrol station nearby who still insist on filling your car for you. Mr Mason asked for £40 worth and was chatting with the pump attendant when the attendant said “You did say ‘fill it up’, didn’t you?” Mr Mason said no but the attendant had only put in something like £43 worth of petrol. “That’s OK” said Mr Mason, quite happy to pay but the attendant said no, it was his mistake and he wouldn’t charge him more than £40. Seriously, we have gone back to the 1950s and, obviously, will continue to patronise this petrol station.

So, where was I? Arriving at Holborn I walked down to LSE where I was early for my meeting. I waited outside the room until the food and drink arrived and then went in and kicked the students out who had been eyeing our coffee and sandwiches. They left without me having to hit or poke them with my stick. It was really nice to see everyone and it somehow felt very different to the last meeting which was only in February. These meetings are known amongst my friends as the Hula Hoop meetings because we always have Hula Hoops. Ever since the first meeting when they were brought along as part of lunch. we have insisted on having them each time so one of the researchers goes into Iceland on her way to the station and picks up a couple of big bags. We have been having Jaffa Cakes (in individual packs) but after 4 years we are thinking of having something else but we’re just not sure what. I’m voting for Tunnock’s teacakes, personally.

Ms Brookes had picked up 2 kinds of Hula Hoops this time – the normal sort and the new low-calorie variety. It was a bold move and there were cries of derision as soon as they were put on the table. However, we are a bunch of researchers so need to investigate things. I stuck to the original type whilst Ms Brookes and Ms Collins tried the new version. We checked the calorie difference which looked quite good until we realised the new low-calorie version has just 15g per pack whilst the original has 24g per pack. Apart from the fact that they didn’t taste so good and, as someone said, tasted like something you wouldn’t buy again, the calorie difference is very small. Puft Hula Hoops have 482 calories per 100g whilst original Hula Hoops have 507 calories per 100g leaving us with a measly 25 calorie reduction. We decided it was an experiment we would not investigate further and I believe some may even have been left for the students.

Coming home is difficult. I simply find it incredibly hard to keep my eyes open. This drowsiness sems to be a perpetual problem at the moment, no matter how much I rest or sleep. I imagine it’s a consequence of the Kadcyla and Fibromyalgia having a little battle between themselves. I meet a nice woman on the train at Kings Cross who I help to find a seat and then find at Grantham she is also going to Boston where she will be working at Pilgrim Hospital. I feel a bit like a tour guide as I point out landmarks along the way and tell her of the good things she will find in Boston. I point out the fields of rape which are in full bloom and remarkably vibrant. She mis-hears and thinks I say ‘grape’ so when I tell her it will be made into oil, she is confused and asks why they aren’t making wine with it. Chatting with her is a good way to stay awake, though.

Arriving at Boston, Mr Mason is waiting which is lovely. The following day my Macmillan nurse comes to see me and is so helpful and thoughtful that I know I have found a gem. She has so many services she can tap into for us, including someone to help with the garden or ironing, and she realises I feel cold in the evening so arranges for a heated blanket to be sent to keep me warm while I snuggle on the sofa. She has contacts with the Marie Curie Fast Response team who are keen on hospital avoidance. Immediately I like the sound of this so she will refer me to them. She also knows where I can get a massage, reflexology or reiki and will send me all the details. She is just bursting with ideas and the only downside is when she has to ask The Question – what is your prognosis? I have gone from wanting to know to really, really not wanting to know. I am in a good place in all senses and don’t want to be told “Well, next year doesn’t look too good”. I just don’t want to know any more. I have run away from London and from cancer and it shouldn’t have any part in my life any more. I know this is illogical but it’s how I feel. The following day I am so tired I only get out of bed at 3pm and am then back in it at 9pm. I think my trip to London has kicked in and added to the sleepy mix.

Today the new cleaner, Jan, arrives telling us about her cousin, Ray Clements, and his cancer. She does a good job on the cleaning front, too. My heated blankets arrive and I finally settle down to blogging although there is a lot of time with me resting my head on my hand and shutting my eyes. Finally, this afternoon we have an appointment at the doctor’s for Mr Mason who has been suffering throat trouble for some time. Of course, it is me who keeps saying “Let’s make an appointment at the doctor’s” to which he always demurs. Finally I have a breakthrough (and control of the patient log-in service at our local GP’s) so today is the day. He cannot remember the name of the doctor. I tell him it is Dr Bumhead. He does not believe me. I say a certain way to find out is to go to the receptionist and say “Is my appointment with Dr Bumhead or another doctor?” What’s the worst that can happen? More demurring. He goes to see not-Dr-Bumhead and comes back beaming. He has an allergy, probably to Lincolnshire but certainly not a hint of an infection and has a spray to squirt up his  nose. I collect my ragtag bag of medicines and discover that instead of giving me slow-release morphine they have given me a small bottle of Oramorph. I will now have to make an appointment to show my GP the box the medicine comes in to make sure I am prescribed the correct medicine in future. Luckily I picked up a supply when I was in London last but the idea of the pain which would ensue without the correct medicine is just not worth thinking about.

So tomorrow we are off to see the potential oncologist at Pilrim Hospital. Fingers crossed she’s nice and knowledgeable, willing to debate and discuss my case with me before making decisions.If she is, she gets the bag of good Hula Hoops I’ve got secreted in my handbag. If not….well, it doesn’t bear thinking about.

And good luck to all those taking part in the Vogalonga this year, especially Wave Walkers and most especially my friend Mrs Bowden who is taking part so she can keep my seat warm for me!

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