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.
Hi Shelley, I love catching up on your news. Your desire to inform about the effects and treatment of cancer is inspirational. Love to you and Mark – I wish you lots of blissful sleep. Hope to see you soon. Cx