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.