The bottom of the wardrobe and other stories

Before I am even dressed on Sunday I decide to clear out the bottom of the wardrobe. It has to be done in the face of our impending move but crouching and bending positions don’t sit well with breathing so I go at it like a mad thing, pulling everything out and then looking at it. Lots of things will go to the charity shop but there are some fabulous memories there among the dusty shoes and boots. There is a pair of sand coloured suede slip-ons, hand-stitched by Tsonga and which I loved. We bought them in Knysna in South Africa about 11 years ago. We had flown out there as a family of 4 and stayed with a friend in Simon’s Town, just outside Cape Town. The naval harbour had been built by the same craftsmen who built the harbour in Portsmouth so looked very familiar to us. We spent a few days in Cape Town, eating fabulous food, visiting the penguins and doing the inevitable trip to Table Mountain. Mrs Safaie was a teenager then and decided to abseil from the top of the mountain. There was not a lot of supervision and I was torn between watching out for her (she was told to ‘just make her way back to the top’ after her abseil) and looking after Mr Mason who is not good with heights. He could only stand in the middle of the plateau looking faintly green while Mr Mason jnr and I tried to look at the view. Once Mrs Safaie had made her way back to the top, hot and dehydrated, we went back to the car, looking for her watch which she had realised was missing while at the top. It was a present from her grandparents so she was keen to find it. We did find it. We found it had been splattered into the tarmac by probably a steamroller, so far down it was pressed. She was very upset and I said the immortal phrase “One day you’ll laugh about this”. Periodically I still ask her and she still says it’s not funny but I think she’s just about coming round.

I find a burgundy velvet hat, embroidered with gold thread and mirrors. This takes me back to the Alhambra Palace. The hat belongs to Mr Mason jnr who, when young, loved wearing hats. We were in Scotland once when he took a liking to a deerstalker. There was some mad Scottish reel being played in the shop and we chased him round, retrieving the hat only for him to grab another deerstalker and run off with it again. Fast forward a few years and we are in Spain and he has another hat – the burgundy and gold velvet number. It is very hot and we wander round the cool palace, taking in one amazing room after another. In each room there is a Spanish lady, usually an older woman, who can give you information if you need it. Mr Mason jnr was very blonde in his youth and no Spanish lady can resist ruffling his hair and pinching his cheek. They are also perplexed by his hat and one whispers to me, asking whether he is Jewish? No, he just likes hats. The hat I am keeping.

A pair of black, pointy suede shoes with patent tips, bought to attend an important meeting in anticipation of winning a big NHS contract sit disconsolately at the back. These shoes I wore once, for a few yards. Before I was diagnosed with cancer, one of my contracts was with a company who wanted to provide services to the NHS. I worked with them pro bono to bid on the contracts they wanted as I had experience in this area where they did not. We were invited to a meeting where we would be questioned about our service and then told whether we had met the criteria and would be awarded a contract. It was a very big deal, across a wide area of the country, and in anticipation of the meeting, I bought new shoes. I wore them one morning when I was going to sit in court and before I got there, the back of my heels were in ribbons. I limped into a shop and bought socks and blister pads. I limped to court and phoned Mr Mason, asking him to bring me shoes without backs so I wouldn’t have to walk around court bare-foot. Actually, I don’t think that would have been allowed but there was no way I could have worn these shoes. For the big meeting I wore an ordinary pair of shoes and yes, we were awarded the contract. When I was diagnosed, I assumed I would be able to work through my treatment. After all, I mostly worked from home and only travelled up to the Midlands once a week, sometimes twice. I remember sitting in a meeting in Manchester, fiddling with my hair and watching handfuls come out. It was probably about that time I realised I was not going to be able to carry on as though nothing was happening. I agreed to do slightly less work and then, after a month, I was quietly let go. In amidst the fear and anguish of cancer, I didn’t have time to be upset or angry about work. It was something that used to matter but didn’t any more. Most of the people there I worked with slipped quietly into my peripheral vision. My illness was an inconvenience that could be dealt with and their focus turned away from me. I was fortunate in that we could manage because we had savings to fall back on but in work terms, I was quickly forgotten.

Finally, there is a flat box from Liberty which once contained a silk scarf, bought for our 10th wedding anniversary by Mr Mason. I still have the scarf but the box makes me smile because of the story behind it. Mr Mason went into Liberty’s and thought he would buy me something lovely for our anniversary. He looked at the cotton scarves and found one he liked. When he pointed it out to the assistant, she brought him the silk version which was, of course, a lot more expensive. There was that dilemma for a few seconds. Was I worth the silk scarf? Should he buy the cotton one which he had intended or the silk one which he hadn’t even considered and was a lot more than he intended paying? It was our 10th anniversary, after all. As you know, he went for the silk one and 25 years later, I still have the scarf and I still have Mr Mason.

X doesn’t mark the spot

After a sleepless night, Mr Mason and I rise early to make our way to Charing Cross. We get there at 7.30am, finding a parking place easily, and make our way to the day surgery ward. After a while I am called through by a fabulously camp nurse who tells me Mr Mason can wait while I am seen by the surgeon “in case there are any changes”. He is possibly psychic. I am moved into another waiting room where the morning tv news is blaring out. Eventually I am called through by a surgeon and we are shown to what appears to be a small cupboard. He explains rooms are at a premium on surgery days which is borne out by the number of times people try to gain entry by rattling the handle while we sit there. Firstly, the surgeon says he doesn’t think my voice sounds too bad. I agree but explain I was first seen in September and that my voice tends to come and go. He says perhaps I should have an injection rather than the full-blown thyroplasty but that he will talk to the consultant. Either way, there will be an anaesthetic and, depending on which procedure I have I may or may not be going home this evening. He checks which side the surgery will take place and taking out his pen, draws an arrow on my neck. The anaesthetist comes to see me next and we go through the same questions the other anaesthetist asked me. He says everything looks good and I can go back to the waiting room. I discover am quite a way down the list so I call Mr Mason and tell him he can go but to ring about 4pm to see whether I am finished or not. I remind him not to call me.

I sit back down in the waiting room and close my eyes managing to drift off to sleep without snoring or drooling. The surgeon comes back about 30 minutes later and calls me through. We go to another cupboard and he tells me he has spoken to the consultant and that they are not happy about doing the surgery. The anaesthetist has reviewed my last ct scan (finally!) and is unhappy about the amount of fluid in my chest. Huh? So what was the pre-op assessment about? Did nobody think to look back at my tests even though I repeatedly said that I have secondary cancer in the lungs and that I sometimes struggle to breathe? Does this mean the witch who was so rude to me and the lovely Joyce was not right? According to her, having a tube shoved down my throat would mitigate all other risks. He tells me that they will review me after my next scan, due at the beginning of March, and that the fluid on my chest will need to be drained before they can operate. I ask whether speech therapy might help. He agrees and says my vocal chords on the right hand side have compensated well for the paralysis on the left. Apparently it normally takes a year at which point people are reviewed for a thyroplasty. Hmmm. So this has been done all arse about face back to front. “So I can go, then?” Having just sent Mr Mason on his way, I now have to phone him and ask him to turn around and come and collect me. I send texts to Mr Mason jnr and Mrs Safaie so they don’t worry and settle down to a hot chocolate and some slow-release morphine while I wait.

I wonder how much this has all cost. The time of the doctors, nurses plus mine. I feel that if someone had just listened, things might have been a lot easier and a lot less stressful. Although it might surprise some medical staff (although I don’t tar them all with the same brush), patients often know quite a lot about their own medical contition and state of health. I can confess now I didn’t want to have the surgery, it worried me. Sitting down later, Mr Mason confesses the same thing. It doesn’t take a genius to work out that surgery on someone with compromised breathing and a depressed immune system might be a bit tricky but I don’t know how many times I’ve asked the question, only to be told it will be fine, particularly by that witch of a nurse. Still, I get the rest of the day back which enables me to sleep properly for several hours and enjoy a bowl of tomato soup for my lunch.

In celebration of my early arrival home, Dog snuggles up to me on the sofa and produces something so noxious it makes my eyes water and causes me to wonder yet again whether it is possible he is burning tyres up his bottom. If so, it’s probably a new inititative from our fabulous coaltion government.



The sound of silence

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.

I am not yet dead

I wish that people would stop talking to me about end of life care. First it was the GP, then the psychologist. The end result may be that they understand how a cancer patient feels or they understand me better but from my perspective, it’s given me nightmares and I feel really upset about it. I’m not in denial that this fucking disease will see me off but I’m not ready to go yet and I’m not ready to talk about it, either. Yes, some people think I should be ready to talk about it. Hurrah for them. I am a competent person, I have successfully raised 2 children, worked happily for several organisations and run my own business for the last 12 years. I’ve worked with those who have experienced loss and tragedy, got my hands in the dirty dishwater (as my supervisor at the Samaritans used to say) and can talk about feelings readily. I am even able to cross the road and wipe my own arse so when I want to talk about being cared for as I die, believe me, I will do it. Death isn’t a taboo subject in our household but talking about my death isn’t on the agenda yet because I don’t feel it’s the right time. It will be my decision as to when that time will be. I don’t have a lot of control over what happens to me but that is something I can choose to do when I want. So for anyone who wants to approach me, head slightly tilted to the side, and ask in a soft voice about how I want to be cared for at the end of  my life, DON’T! Instead, you can just fuck right off.

Oh, it has made me cross!

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.

How do-you-do saves the day

Sometimes, when out for a walk, Dog takes it into his head that coming back to us is not a good idea. Recall in Salukis is known to be poor but generally Dog does quite well. As long as Mr Mason is armed with a treat of some kind, Dog will succumb and allow himself to be put on the lead. There have been occasions when he has refused to come back and Mr Mason has had to resort to every trick in the book to get him back. The most memorable (and my favourite) was when Mr Mason lay on the ground, whimpering and pretending to be hurt so that Dog came close enough to be grabbed. How that didn’t make it onto YouTube is a mystery to me.

This weekend we are seeing friends and on Sunday it is our day to say farewell to our lovely Wave Walkers dragon boating team. We decide to take Dog with us as it might be a long day and he likes lounging in the boot on his 2 enormous cushions wearing the coat that makes him look like a lower league football manager. The day is very cold and, despite the wind whipping across the dock, Mr Mason accepts the invitation to get in the boat and paddle. Dog and I sit in the car keeping warm and I spend time speaking to our friend Ms Frumin about the costs of moving. She has found a lovely Polish man who seems very efficient and has given her a very good quote for her forthcoming move. She sends me the details. (He is coming tomorrow so watch this space) One the training session is finished, we walk to a floating Chinese restaurant in Docklands. It’s really good to spend time with people we have paddled with for the last 2 years, who were with me when I had my first signs of secondary cancer in Venice and who have been so bloody supportive and brilliant, I can’t begin to tell you. Mr and Mrs Lee, the coach and helm, run Wave Walkers because they love the sport and want to offer it to people who may not have thought of it. They do it without payment and with huge love and enthusiasm and I am blown away by their commitment. They are ace.

So, we have a brilliant lunch. One of the great things about going to a Chinese restaurant with Chinese friends is that they choose fabulous food, things we may not have heard of or thought of ordering. They always ask politely if there is anything we particularly like or whether we want to order for ourselves but really, when you have experts in the house it’s best to let them get on with the job. In discussing our move to the country, we were told that having pampas grass in your front garden means that swingers live within. Is there a whole floral code, we wonder? We make a mental note to remove any pampas grass and to monitor closely those in the village who grow it, just to test the theory. Whilst waiting for the food, Ms Turnbull tells us of the time she accepted a dare to put a whole Mars Bar in her mouth. You have to realise that in those days, Mars Bars were about twice the size they are now so putting a whole one in your mouth was actually quite dangerous. She couldn’t bite down, she couldn’t close her mouth so she just had to try not to panic and allow it to melt. Very kindly she demonstrated this for me.

IMG_20150201_130232795 After lunch, we reluctantly wend our way back to the car and decide that on the way home, we will let Dog have a good run in the park. This is when he decides to be naughty. After half an hour, I am called by Mr Mason who asks me to join him. We try all sorts of tricks for him. We try the “I’ve got a stick and you can’t have it” trick, we cuddle (Dog likes to get in the middle of a cuddle), I pretend I have found a treat in my handbag, we walk away from him repeatedly and I also pretend to cry. None of it works and it’s getting dark as well as it being very cold. Finally I resort to being English and polite and approach Dog with my hand out saying “How do you do?” Dog has been trained to shake hands and it is this that finally grabs his attention. He approaches, preparing to sit and shake hands and I can finally grab his collar. He doesn’t seem to mind as I suspect he’s also been getting bored and cold. As we leave the park, I spy a house opposite with pampas grass in the front garden…