A world of fatigue

These days I am living in a world of perpetual exhaustion, fatigue, tiredness – call it what you will. Symptoms go like this. Go to bed at a very reasonable hour, between 9 and 10pm. Try reading for a few minutes but give up due to inability to focus. Wake up around 7am, still unable to focus and feeling very sleepy. Negotiate with self and sometimes Mr Mason about what time I will get up. Should I continue resting or should I get up and try and energise myself that way? Today we negotiate 10am as a getting up time followed by shower and getting dressed. My body cries out to go back to bed. I find it very hard to read anything as it is so difficult to focus my eyes. I sometimes feel slightly inebriated so if you ever get a message from me which is a bit weird, put it down to this strange fatigue because I will have written it when only half awake. The feeling inebriated part is so ironic in that I have not had a drink in months. My medication makes that a no-no but I also don’t actually feel like having a drink so to not remember what I did or said the previous night is a bit galling, to say the least.

Having got myself ready for the day, we head off for Sainsbury’s for exciting things like bleach and smoke detector batteries. One battery failed the other night leaving Dog in a state of high anxiety. He either cannot bear the noise the detector makes when it tells you the battery is failing or he has been in a fire before as he trembles and cries and this state usually lasts around 24 hours. On the way round the supermarket, I find myself a boyfriend of around 80 who needs help finding the right kind of rice. I love having conversations like this in supermarkets. Mr Mason doesn’t pick anyone up but buys some beer to cheer himself up. This is short-lived as he leaves the pound coin in the shopping trolley. On arriving home, we find next door are having their windows cleaned. Hurray! This was not a job I was looking forward to and knew it would not be Mr Mason who went up the ladder. Actually, I didn’t think it would be me, either, as the windows are very high and I am so unsteady and accident-prone. We nab them and they come round straight away and spruce us up, front and back for £20 which is brilliant. Dog and Lark decide they love the window cleaners in the garden but once they are up their ladders, they only want to bark and growl at them to show how fierce they are. I hope my training to not bark only extends to when we are in the house. Sometime while the windows are being cleaned there is a huge bang which knocks out the internet temporarily and sets off alarms in the village. There are occasional bangs from a gas gun to scare birds away from nearby fields but this is much louder and apparently in the sky. Hopefully it will be on the news this evening. We live an exciting life.

So, back to the fatigue. I am obviously at my desk and typing but boy, it’s hard to keep my eyes open. My choices are quite limited. I really understand the benefits of exercise in terms of increasing energy but I feel I’ve done that with my Sainsbury’s trip and a little play in the garden with the dogs. So what should I do? Sit on the sofa and try to read (through unfocused eyes) or watch tv or go to bed and sleep? If I do either I miss a lot of the day and I don’t like to do that. I have tried drinking Diet Coke and coffee which is not decaffeinated (which would be my usual brand of choice) but nothing seems to work and tiredness combined with pain can leave me tetchy and irritable. Painkillers also make me more tired, obviously, but it’s hard to pinpoint the exact cause of the fatigue. Is it cancer, Kadcyla, Fibromyalgia or something else? Knowing the cause probably isn’t going to help as there clearly is no solution; I just have to get on with it and manage it. But when the sun is shining, I really like to be out pottering around the garden. Maybe I’ll just drag my reflexologist’s chair out under the apple tree and have a doze there. It sounds better than sitting inside with the tv.

And I heard a brilliant joke the other day which amused me and I will leave you with. There were 2 cats trying to cross a river. One cat was called One Two Three and the other cat was called Un Deux Trois. Which cat do you think successfully made the crossing? It was One Two Three because Un Deux Troix cat sank. Enjoy, courtesy of Mr Tozer!

Sorry, this may be upsetting

Sometimes I wonder how people find my blog. Like the recent day which saw a huge number of hits from Kazakhstan – brilliant – and the steady number of readers from Switzerland, where I know no-one. Last year I was read in 49 countries. But I’m also interested in other people’s blogs, espeically those who write about cancer and, more particularly, those women who have Inflammatory Breast Cancer. Inflammatory Breast Cancer is a rare, aggressive form of cancer and this is the sort I was diagnosed with in March 2012. One of the ways people find me is through the Being Cancer Network – a blogging resource for people transformed by cancer (to quote). It’s possible to search the blogs according to the type of cancer the writer has and, of course, I want to read the blogs of those who have Inflammatory Breast Cancer (IBC). What is depressing is the number of bloggers who are no longer blogging because they have died. Yes, it’s a hard thing to read and it’s a hard thing to write. Their blogs show photographs of healthy, happy young women, some with babies and young children and it’s like a punch to the gut to realise they are no longer alive.

I know I don’t always talk specifically about cancer, partly because it’s a horrible subject and also there are other things in life which are much more interesting. But whatever I write about, cancer is somewhere in the background, having an impact, ordering my life and making its presence felt. It’s almost impossible to forget about it, to lead a non-cancer life. My diary is ruled by cancer. Hospital and doctor’s appointments always come first and everything else is fitted in around it. After the appointments, my diary is ruled by how well the cancer lets me feel. Do I feel well enough to meet with friends, go to a meeting, do the shopping? Do I even feel well enough to get dressed? Work and even moving house is guided by cancer. We work around it as far as we can, trying to bend it into a shape we can work with but it is difficult. It is woven into the fabric of not just my life but Mr Mason’s and, to some extent, my offspring. It’s like a pebble dropped into a pool – the ripples just keep on going.

At the moment pain is also directing what can happen. I have a lot of pain in my right upper arm and shoulder. It could be caused by many different things but, of course, the potential cause at the top of the list is that the cancer has progressed to my bones. At this point there is no reason for alarm. There is no evidence of metastases at present and a bone scan next week should tell us what’s what. One of the other issues is that cancer comes at the top of the healthcare list and if the pain isn’t caused by cancer, I suspect it will just be dealt with by more painkillers rather than investigating the real cause. It’s a bit like the problem I have with my voice. We know the vocal chords are paralysed on one side. A CT scan revealed there are no enlarged lymph nodes pressing on them which had been suggested as a possible cause but now we know what isn’t happening, there is very little interest in what is happening. The surgery to give me back my voice is booked for later this month but no-one seems bothered as to the cause of my weak and husky voice. Is it that spending the money on someone with Stage IV cancer is not worthwhile? Surely it can’t be that basic? Perhaps they are trying to spare me yet more hospital appointments. Whatever the reason, I don’t feel I have the energy to demand investigations and yet I really do want to understand what is happening. I’m sure it’s no different from any other long-term health condition but having cancer really is exhausting, mentally and physically. It’s like a pretty crap full-time job with a rubbish manager (and I’m thinking of someone specific there) and a never-ending heap of work to get through.

Today I visit my GP to see if we can get my blood pressure under control. The Kadcyla has made it rise and it’s being stubborn about behaving. My GP tells me that being in pain is also going to make my blood pressure go up so we discuss various types of pain relief. I can tell this woman wants to understand, as far as she can, what it’s like to have Stage IV cancer and she asks lots of different questions about what I am frightened of and how I can be supported. I am slightly taken aback when she asks about end of life care and which family members I would like to provide it. Here I sit on this see-saw of optimism, thinking ahead in years and then suddenly I am dumped on the ground again with the possibility that I am being too optimistic. Darn it, I can’t live my life thinking I will only be around for a short while. I have plans, I have targets and goals I have set myself. I have new things to learn, new skills to acquire, a new house to play with and battery chickens to rescue. And I have MPs to pursue.

Last year, I emailed my MP, Angie Bray, to ask her questions about the Cancer Drugs Fund and about teaching school children in PHSE lessons how to be vigilant about cancer. I got a response to my first email and then there has been absolute silence. My second and third emailed questions are just hanging in the ether. I waited patiently, thinking she may be enjoying the long vacation which MPs have (although I know most of them work through this) and then sent her copies of my emails and asking for a response. It is now 2 months since I wrote to her and I am still waiting to hear what she has to say. As a constituent, I am incredibly disappointed that my MP, for whatever reason, has not responded, particularly with the General Election coming up in May. I would have thought that the CDF is an important enough topic to warrant a response as is health education but clearly, it hasn’t risen to the top of Ms Bray’s list yet. And if I’m getting an email acknowledgement each time I write, surely this means it is not going into a spam folder? I would hate to think I will get a response based on the fact I am blogging about it on social media and that the blog is read by a respectable number of people in the UK and worldwide. Come on Ms Bray, pull your socks up and answer the difficult questions I sent you.