Tag Archives: chemotherapy side-effects

Insomniac Identifies Owls

by

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.

Lark’s Diary V

by

This week has been SO hot, the hottest ever anywhere in the world, I think. I have had to drink lots more water than usual and Mum keeps a big bowl in the garden for me and Archie. Last week she bought a hat to keep her cool and now she has bought one for me and one for Archie. Mine is a bit too small but Archie’s fits and he gets lots of comments.

IMG_20150630_122231040IMG_20150630_122241126

Anyway, it’s all turned out for the best because while Mum is waiting for my new hat to arrive, she has got me and Archie neckerchiefs and we have decided to form a club called the Pigeon Catchers Club and Archie and I are the only members. Every time a pigeon lands in the garden or flies over it quite low, we have to run like anything to see if we can get it. I’m not sure about what we’ll do next but then we haven’t caught one yet. It’s a good excuse to bark, too, which I quite like doing. If other people need pigeons catching, we could go into their gardens and help them if they give us some Bonio. We look very smart, anyway, and Mum says they will keep us cool so I haven’t even tried to take mine off yet.

I did a poo in the kitchen this morning. I didn’t even mean to, it just sort of slipped out and before I knew it, it was on the floor. When Mum found it she was cross with me. I still don’t know how to tell her I need to go to the toilet and I’ve watched what Archie does but I can’t work it out. I wish he would just explain because he always goes outside and never makes a mess inside. I don’t know what she’ll say when she finds out I’ve been weeing on one of the beds upstairs. Sigh.

The other night, while we were sleeping, there was some terrific noise outside and lots of lights flashed. Freya doesn’t like loud noises so she came onto the bed, too, which was nice as I like to sniff her. I watched it for a little while but then it got boring so I just went back to sleep. Apparently it was the weather doing A Storm which doesn’t happen often. And then another night the sheep outside were making a lot of noise in the middle of the night and Archie started barking because he could hear cats crying so Mark went downstairs and made sure the cats were inside. He thought it was a fox upsetting the sheep and Mum thinks a fox here might eat a cat, not like the foxes they have in towns. Archie says the foxes in towns are lazy and just go through people’s bins to get food and also enjoy a game called ‘Annoy the dog’ which means they all sit in front of your window and just stare at you. Archie says once he got so cross he broke the window trying to give the foxes a piece of his mind. Archie is a really tough dog and I’m glad he’s my brother, even though he does put my head in his mouth quite often.

I was a bit upset with Mum the other night. She met a man when we were out walking who was admiring me and asking who my breeder was and then he said “Her nails need clipping” which annoyed Mum because she already knew that and had the clippers at home. She had showed them to me before and I didn’t really like the look of them. In the evening, she asked Mark to hold onto me while she clipped my nails and I hated it. I squirmed and squeaked and did everything to tell her she didn’t need to do it but she carried on because she said half a manicure would look silly. I sulked after that, even though she gave me a Bonio and I got in my crate and didn’t speak to her. I know she only does good things for us but I can’t see the point of this.

Then I felt sorry for Mum when she fell over in the Castle. There were some old people there with funny clothes on and little fires and then a man shouted “Do you want to know the history of the Castle?” I thought “not really” but he carried on anyway for ages and then people clapped a bit and we walked around. There wasn’t even any free dog food to try. We saw another dog and wanted to say hello so ran ahead but Mum was walking Archie and he’s big and even stronger than me and she fell over and everyone went “Ooooh” and tried to pull her up. I tried to help but apparently I got in the way and then after that we went home and Mum went to sleep so I did, too.

Today we have visitors coming from a place called Norway which is a long, long way away. There are 2 grown ups and 2 children. I don’t know very much about children but all the ones I have met so far have been very nice so I hope these will be too. I have been told not to jump up at them as they are very little and I might knock them over but I hope they will play in the garden with me and we can run around and bark and chase toys. I am good at getting under bushes so we could make a den and have our lunch in it. I am quite excited. Now I am going to follow Mum around the house as she tries to find her slipper. I’ve hidden it in a really good place this time so I’ll see how long it takes her to find it.

IMG_20150703_141104241

A Mediaeval toppling

by

Through some clever manipulation, Mr Mason and I manage to arrange our week so that we can go to the Lincolnshire show. I love County shows. The week doesn’t start well with Lark coming into season. At first I think she has cut her paw (D’oh!) because she leaves a red bloody mark on my night dress but then, upon investigation and an email to her breeder, we are sure that is what has happened (coming into season not a cut paw). What do we do? We have never been in this situation before. I have a mental picture of all male dogs in East Lindsey rushing towards her and getting to our garden all at the same time. There are dire warnings on the internet and I suddenly feel very protective of my little pup who has no idea what is going on and still enjoys chasing a fluffy bunny and a screeching monkey around the garden. Should I be on one of those Channel 5 programmes as a bad mother? Probably not, I remind myself, she is a dog. Mr Mason and I trawl the charity shops in Horncastle to find suitable garments for her nether regions to keep the house reasonably clean. The first item I find is a pair of Superman shorts. It’s very difficult trying to size up an 11 month old whippet and compare it to a 3 or 4 year old child. At 99p I decide to take the risk but the woman at the counter undoes my subterfuge. “Going for a swim, are  you?” she asks. Now I can either grow the lie or just take it on the chin. “Actually they’re for my dog. She’s come into season today.” The assistant hoots with laughter and can still be heard as we go into the next charity shop two doors down. In the supermarket, I think I have cracked it. A pair of Swimmers! Nappy-type pants for kids who want to go in the water but can’t resist leaving a surprise. Again, the sizing catches me out. Helpfully, someone has opened a packet of the size I think would be right but it seems much too small to me so I buy the bigger size. Getting her into them is another job. She doesn’t mind too much but can’t resist chewing at the tapes so in the end I have to take a roll of sellotape and tape her in. Of course, when Mr Mason takes them off her later (yes, it was always going to be his job), there is a poo in it and I’m not sure who is more surprised.

On our way to the Lincolnshire Show the following day, armed with dire warnings of horrendous traffic jams, we see a rather chubby woman wearing a t-shirt with the slogan PUGS NOT DRUGS! It teams well with her tracksuit bottoms and slippers but we can’t quite get our heads around the slogan and so then make up rude and politically incorrect versions of our own as well as some equally perplexing ones to match the original. FEET NOT MEAT! PENS NOT HENS! You can take it from here. Getting into the show is a breeze. We are shown to the Disabled parking area which is very close to the entrance and then walk through with our pre-printed tickets. Lark is worried by the traction engines but both dogs enjoy the show jumping. They seem fairly relaxed although will not take food or drink from anyone except me and even then, Dog needs lots of coaxing. We find places to sit when we need them, buy some fabulous cheeses, smoked garlic salt, a hat, a wonderful walnut sourdough bread and a pair of ratcheted extendable loppers for Mr Mason who is very excited by this purchase. We go to see the pigs and sheep (PIGS NOT WIGS!) and then find out afterwards that dogs were not permitted. None of the animals seemed worried by each other and the size of both pigs and sheep was amazing. The pigs, particularly, were huge and sleepy while the sheep quietly stood guard. We left the show at around 4pm, thinking we had probably left it too late to avoid the terrible traffic but slid out of the car park easily and got home in record time. Obviously ‘terrible traffic’ in Lincolnshire means something quite different to what we are used to. I am really pleased with the way I handled the Show, managing to stumble round without falling over and being on my feet for quite some time. The weather at the Bolingbroke Mediaeval Madness a couple of days later is not so fair; in fact, it is raining. I have taken to walking Dog rather than Lark as he seems quite steady and sensible in comparison to her skipping and lurching about. Despite her size, she is quite strong, too. A sight hound is spotted at the Madness and so both dogs decide to make a break for it. Unfortunately, the new dog is downhill from us and Dog manages to pull me over completely. One minute I am upright and the next I am flat out, wondering if I have broken anything or not. Getting up is the hard and humiliating part. Complete strangers are offering to haul me to my feet and I feel disorientated and really just feel like lying there for a few moments, now that I have taken the trouble to get down there. Unfortunately this type of inactivity comes with the label of ‘slightly mad woman’ so I allow Mr Mason to haul me to my knees and then I flounder around and do the rest without looking too overwhelmed and I hurry away with Dog and apologies for my clumsiness. Being unstable does upset me, though. Sometimes I find it hard to walk in a straight line and my family is obsessed with me getting in people’s way. I often feel a firm hand in the small of my back ushering me along or being grabbed by the hand to move out of the way or cross the road. The latter move is doomed to disaster as the grabber is inevitably moving faster than me and if they persist will end up with a far more embarrassing scenario as I land flat on my face. Following the Mediaevel Madness toppling (‘toppling’ being the phrase coined by Mr Mason jnr for my many falls, including a spectacular one on the Champs Elysee for which, I suspect, i am still not forgiven), I feel exhausted and go and sit on the sofa and pretend to watch something on tv. Mr Mason goes back to see the one or two knights who have come to do battle and I don’t even realise he is gone. Apparently the knights really go at each other, dealing heavy blows as though there has been a slight disagreement over a pint of real ale earlier in the day.

And so sets in a period of extreme fatigue which is why it has taken me so long to update my blog. But the world doesn’t shut down nor does excitement and laughter which is a great part of the Mason household so I will be back before long with more tales of mayhem and destruction (and probably toppling). Enjoy a rare sighting of me in a photograh, completely unprepared and not having my photogenic body on.

P1000125 P1000145 P1000150 P1000133

The sound of silence

by

Last week I manage to arrange a pre-operative assessment for myself. Yes, I know the hospital should do that for me but sometimes you just have to take things in hand. I had a pre-op assessment in October just after I came out of hospital following my extreme toxic reaction to Lapatanib and Capecetabine. The anaesthetist at this meeting feels it would be better to wait until after the wedding to have surgery which, given that I can barely stand, seems like a good idea. Since then, the surgery has been listed twice and cancelled twice. The last time, the surgeon phones to apologise for the cancellation and I mention during our conversation that I need a pre-op assessment. He agrees I sound breathless and says he will arrange it. Cue tumbleweed. Once I am in receipt of the new date, I phone to ask about an assessment, explaining that my breathing is not always good and that they are going to Knock Me Out and so, finally, it is arranged.

As usual, it is squashed in with other appointments and after seeing the oncologist, a drink in Maggie’s and a sandwich in the restaurant, I make my way to the appointment. The nurse I see, Joyce, is lovely and goes through all the details with great diligence. I still have to explain about the cancer in my lungs, though, so she gets me to test my breath and writes the number down. “Is it good?” I ask. She is not sure so we will go and ask her manager. And what a ghastly woman she is. From the moment we step into her office, she behaves as though we are questioning her judgement rather than asking her opinion. She is defensive to the point of rudeness and I even have to say I am not being critical, just wanting to know if everything is OK for surgery. I explain my oncologist is concerned I will not be able to lie flat to which she launches into a rant about how I will have a tube down my throat maintaining my breathing so why am I worried about that? Every question and concern is swatted away like an annoying fly and I am taken aback by her rudeness. She is critical of my nurse’s concerns, too, and is really just very offensive. We leave with Joyce rather flustered and me feeling rather angry. Joyce has wanted me to see an anaesthetist so that we will both be happy but her horrible manager says that’s rubbish and we don’t need to do it.

I have just got outside the hospital when my phone rings. It is lovely Joyce who says if I can come to the department on Friday before chemo, I can see the anaesthetist. Joyce is going on holiday to see her family in the Philippines this week and wants to have me safely sorted before she goes away. This is nursing care and the NHS at its finest.

The following day I am seeing my Inflammatory Breast Cancer chums. I have never met anyone before who has had the same cancer so this is a big day and we spend our time together by talking and then talking some more, interspersed with me getting a radioactive injection in preparation for my bone scan. Bone scans I Do Not Like. It’s the claustraphobic feeling, the plate being just a couple of inches from my face and my hands tied so they don’t move or slip off the table. The main scan takes 20 minutes so I decide the scan of my head will take 5 minutes and close my eyes, counting seconds until I reach the magical 300. Only then can I open my eyes and see the plate is further down my chest so I feel marginally less panicky. This is the worst bone scan, though. I feel at times I could just flail about, crying and screaming and the pressure in my chest feels immense through sheer panic. But I manage to stay still and do what is needed. After the initial scan, the doctor decides to take more images of my neck, shoulders and upper arms where I feel most pain. This means 2 plates rotate around me, sometimes directly over my face, sometimes not so I decide just to keep my eyes shut throughout and concentrate on breathing evenly. I should get the results some time this week.

Friday sees me at the Young Women’s Group at Maggie’s and then meeting my school friend, Mrs Palmer, who has driven up from Hampshire to sample the food in the hospital restaurant and accompany me to chemo. I tell my friends they will recognise her because she will be wearing something with Winnie the Pooh on it and she almost disappoints until she whips out her umbrella and there the little chap is. After lunch we go to see the anaesthetist who runs through lots of questions and gets me to open my mouth wide, then pull my bottom teeth over my top lip before finally making me turn my head from side to side and up and down. I ask her if she can tell me anything about the operation to which she says “No” very firmly. She just does the Knocking Out. We see Joyce on the way out and she gives me a sticker to get some blood taken in the chemo suite. I tell her how rude I think her manager has been and that it was uncalled for and unprofessional. She gives me a hug. I stick my tongue out at the manager’s office door and we feel we have dealt with it.

In the chemo suite, the nurse misses the hole in my portacath the first time requiring a bit of further stabbing which, I have to admit, is quite painful and results in a bruise. But the blood is taken and then I am pumped full of different liquids while Mrs Palmer and I talk about our families and Jimmy Savile. Having been reading the Dan Davies book, I want to discuss him and how he managed to get away with abusing so many people of all ages for such a long time, often in plain sight. Chemo finishes and the weekend commences with poor sleep, nausea and lots and lots of itching. I have found there are very few places that don’t itch on Kadcyla and the itchiness continues for some days after treatment. Fortunately the headaches recede somewhat and I am hoping the bone pain will also prove to be Kadcyla-related and will also recede. And if the itchiness could also disappear, I am sure I can manage the fatigue that creeps up and bowls me over. The weekend is good with visits from Mr Mason jnr and Ms Atherton and phonecalls with Mrs Fearnley and Mrs Safaie on Sunday. I take the opportunity to talk because, as of tomorrow, I think I will be silent for a while.

Having no information from the hospital about the surgery and what it will entail, other than a widget (my name for it) which will be put in my neck, I surf the internet. Some patient information sheets tell me I will not be able to speak for a week and should make sure I have a white board or notepad to write things down. Others tell me I will be able to speak only as strictly necessary. This throws up a whole new range of thoughts as to what is strictly necessary. Asking for a drink or just alerting people to a fire? It’s a wide spectrum of possibilities. One information sheet tells me I will be woken during the operation so the surgeon can ensure I have the right kind of voice. I don’t wish to wake up sounding like Frank Bruno, should this be a possibility. I may go home the same day or I may have to stay in overnight. Oh, and the widget may be made of Gore-tex. It’s a confusing blend of things that may or may not happen.

So, tomorrow, following an itchy night, I will present myself at hospital at 7.00am to find out what they will do and whether I will like the sound of it. Having my voice back will be good but being able to cough properly and not choking over food and drink repeatedly will be even better. On with the Sound of Silence.

Oranges ARE the only fruit

by

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

by

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.

002

 

God bless Kadcyla and all who sail in her

by

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.