Tag Archives: Cancer Drugs Fund

Insomniac Identifies Owls

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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.

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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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.