Cutting it fine

OK, so Virgil has crashed and burned as an oncologist in my opinion. Why? Firstly there is the suggestion that he sees me only 4 times a year. Hmmm. For someone with secondary cancer, pleural effusion and a tendency to be unstable on chemotherapy, this seems an extremely bad idea. We have maybe a total of 20 minutes talking together yet he thinks this is enough to know me and my cancer. It’s not as though cancer follows one path (and, pardon me, but my cancer is the rare and aggressive Inflammatory Breast Cancer. You don’t see many of us around). Everyone is different and since the reocurrence, my condition has been complicated. So I say my bit about usually being seen every 3 weeks and he agrees to this. Except he doesn’t really. A week before I would be due to see him, I ring his secretary to say I have not had an appointment. That’s because none has been made. OK, this could be an admin error but he should be looking out for things like this. I know my previous oncologist would have. The first appointment I can have is on 12th June, a month since our last meeting. Since then there have been an echocardiogram, blood tests, including tumour markers, and a CT scan. Have I had a since result from any of these? No, of course not. I asked for the result of my echo at the time but was told it is not policy to tell patients “as they might not understand”. Surely if you ask for the ejection fraction it shows a least a smattering of knowledge? I phone my GP to see if he has the results. No. If the ejection fraction is too low, I will not be able to have chemotherapy on Tuesday. I phone Virgil’s secretary. Not only is it the usual “we don’t give results over the phone” (which I accept and would like to point out that she has been very helpful so far) but Virgil hasn’t even looked at the results so there is no report to send to my GP. Cutting it close, Virgil, cutting it close. So of course, there are no blood test results, no tumour marker results and no CT scan results.

For anyone who has to have regular tests, the waiting around afterwards for the results can be excrutiating. It highlights here the dissonance between Virgil and I and his apparent lack of understanding of what it is like to be a patient. Especially a patient with a terminal illness who is really, really keen on keeping everything on track so she can hang on as long as possible. It makes me very angry and upset. Yes, he’s probably studied hard somewhere and it may have been a struggle but what use is that without a rapport with your patient? The patient/doctor relationship is so important and perhaps what’s worse than his lack of empathy with me is that I don’t have any faith in him. I don’t have any faith that he would go all out to find a new treatment, research options or really look after me. I feel like something on a conveyor belt, being churned out and if I’m not the same as the person before or after then that’s my hard luck. For God’s sake, this is my life we are talking about, not a minor illness. Having optimism, faith and a positive outlook is crucial in making my time as good as it can be. It’s all about quality of life.With a lot of pain, fatigue and just the reality that secondary cancer brings, it’s normal for me to be beating off depression or just general low mood. I feel I’ve done my bit with changing work and moving home. What I really need is a specialist I can rely on, who can understand this and see me as a complicated but interesting puzzle which he or she wants to solve or at least outwit the dreaded disease for as long as possible. I just don’t have that feeling with Virgil.

So, the second opinion is on the horizon and I am really hoping this doctor will have a better attitude. If it seems he is constrained by his Health Authority (which may also be a reason for Virgil’s apparent failures), then I will be looking further afield. I have my sights set on Addenbrooke’s or Sheffield and I’d be really happy to hear any recommendations from anyone who is/has been treated at either hospital.

Where’s Wally?

It’s funny how people react when you say “I have cancer again”. It almost sounds as though I have been careless or negligent and have let it back into my life through neglect. Instead of coming in all guns blazing, this one has crept under the radar and has disguised itself as something much more benign. It leads me to wonder what you do say when someone tells you they have incurable cancer? Often “I’m sorry” comes to mind but I find a far greater need to apologise to those around me for having this bloody disease than accepting someone else’s commiserations. It’s hardly on a par with anything else. “I’m sorry you didn’t get the job/your relationship broke down/you lost your wallet/you got burgled”. And yet here I am, a bit breathless and with a husky voice but apart from that appearing perfectly fine. Just staring down from the precipice. A lot of messages I received were not only apologetic but remarkably sweary. Some contained only swear words which I could really relate to.

On Tuesday I have a heart echo at the hospital. It’s a pretty dull sort of test which involves a man leaning across me and pressing an ultrasound device (what on earth is it called?) into my chest quite hard to get pictures of my heart. While he is sorting out images he leaves his arm draped around me in a friendly sort of way and at the end tells me my heart is as good as it was the last time they looked at it which was at the end of my year of Herceptin treatment. One thing going well! He even gives me the report to take to the oncologist tomorrow in case the online version gets lost. After this I trail over to Maggie’s, aware I will be spending a lot of time here again this year. My friend Ms Marsden is waiting for me as we plan to visit Ms Cantini who, as you know, stalks me like crazy. She is actually in isolation (possibly because of bad behaviour). Word of my secondaries has started to get round and a couple of the centre’s workers come up to speak to me. I cannot imagine how difficult their jobs must be. It would be impossible not to become attached to or fond of centre users and yet they must bear their loss time and again. Ms Cantini is in isolation because her neutrophils are a big fat zero. Ms Marsden and I clothe ourselves in gloves and plastic aprons looking more like redundant dinner ladies than anything else and then wade in. Ms Cantini is, understandably, bored by being in hospital so long and also so very tired. I fulfil a promise I made Mr Tozer which is to behave like a cat by rubbing my face on the end of her bed. We saw a video on You Tube which demonstrates how bizarre it would be if people behaved like cats. Ms Cantini is a bit puzzled but goes with the flow as it’s just like a passing show and will soon be gone. We leave her to the delights of hospital luncheon.

Wednesday brings an appointment with the oncologist. It’s a bit of a frustrating meeting as results of the pleural fluid drained off are not available and at present we are playing a game called ‘Hunt the Tumour’. It’s a bit like Where’s Wally only less fun. The oncologist is sure I have secondaries. She thinks they are in the lining of the lung but, like anyone would, she wants evidence of this. She is very apologetic about the lack of results and tells us that if the pleural fluid comes back showing no cancer cells, she will want to do a biopsy. I don’t think to ask many probing questions about this as I don’t think I want to know right now. She tries to phone cytology but the phone service has a voice recognition system so instead of cytology, it offers her psychology. She gives up. Mr Mason and I trundle off to x-ray but the oncologist has forgotten to book it so we go back to oncology and ask one of the nurses to remind her. We sit and wait for a while and then I think “sod it!” I could be in my Maggie’s group instead of waiting there so that’s where we go. Mr Mason settles down with his book and I burst in and possibly ruin a good moment but it’s lovely to be back with all my girls. Afterwards, we go back to x-ray and eventually the authorisation comes through and I am x-rayed. The radiologist looks at me and says “Have I x-rayed you before?” so I know I am becoming a frequent flyer.

So now I just wait to hear results and see where that will take us. Whatever happens, I will be starting chemotherapy on Thursday and Friday of next week. Whatever I do, I can’t shake cancer from my mind. It’s a bit like having a job I don’t like. I can’t act and then be done with it. It slips in and fills all the cracks and I suspect it will be like this for a while. So no point in having my legs waxed or my hair cut or coloured. It will all be gone in a couple of weeks. Unfortunately, the cancer will not

Being slightly stalked

So I am now in hospital. It’s difficult to decide what to bring. How ill will I feel? Will I be able to wear my own pyjamas? Will I feel like getting dressed during the day? One thing I must not do is get bored. I have my phone, tablet and laptop, complete with external hard drive bursting full of entertainment. On the day, though, I am just so exhausted I barely look at anything. I am admitted at 9am and by 11am they have me whisked off to the treatment room where the drain is inserted with the aid of ultra-sound. And it’s nothing like the horrible, horrible drains I had post surgery so I am pleased about that. I have a little bag to carry around on a blue coat-hanger affair and I must not let it be higher than my chest.

At the first the fluid gushes out and quickly fills the litre or so bag. There are the usual fun and games with sticking plaster which still brings me up in painful blisters. Luckily I have one Mepilex dressing in my toilet bag so they use that, asking if I have any more at home. Within a few minutes, I am gripped by an intense pain in my shoulder and arm with a little pain in my chest. I have a passing wonder whether I am having a heart attack. The doctor comes back to see me to say my lung is flapping about and will cause this kind of pain for a while. I ask for painkillers and get Tramadol which does the job. Back on the ward, they see the bag is already full and change it. Various medics drift in and out of my awareness talking about pain and rates of drainage. Ms Marsden comes bearing gifts including a toilet roll with hearts on it and some cherries. The toilet roll I send home with Mr Mason but I eat the cherries during the evening. I get moved to a different ward and at some point during the evening it becomes clear Ms Cantini, desperate in her search for ‘going one better’ has had herself admitted and is in agonies with fluid around her heart. It’s outrageous and when my new breast care nurse comes to see me, I ask her to send a message saying “Stop stalking me” which she happily delivers.

The night passes slowly. It is hot and I am so tired I actually cannot sleep. One of the night nurses takes pity on me and gives me some sleeping tablets which work quickly. In the morning, while my bed is being made, I stroll down the corridor with my drainage bag, hoping people will not think it is wee, and find Ms Cantini with a nasal canula giving her oxygen. She admits her grand passion for me and explains about her pain and I forgive her. It is very hard to work out whether I may or may not be able to go home today. The nurse I asked gave an emphatic “No” but the consultant who has just wafted in in an “I’m important and don’t really speak to the patients” kind of air, seems to imply that if my drain is re-angled, I could go. I have no idea.

During the morning, I receive a call from Mrs O’Keeffe, who is the Deputy Justice’s Clerk at my local bench. I have made decisions about what work has to be ditched immediately and it is my beloved bench which is first. I was due to go back shortly and I am gutted not to be able to do this now. Mrs O’Keeffe is kindness itself and a very warm, human response to my email which was full of me gnashing my teeth over the whole situation. She agrees that once I am carefully maintained, she would be very happy to have me back and that’s exactly what I would like to do.

My eyes are closing even as I write and it’s obvious I need more sleep. I apologise for the lack of excitement in this blog. There are no strange people in the ward with me. 2 are Asian ladies, one who sings softly to herself quite a lot which is actually rather soothing and an elderly and very proper white lady who is reading Northern Lights. The only person scooting about in unsuitable clothes is me wearing a t-shirt and pyjama bottoms combo without a thought of the crimes against fashion being committed. Thank goodness there is no-one taking photos.

Hello, hello I’m back again…

Perhaps it’s not the most tasteful of blog titles with it’s unsavoury connection to Gary Glitter but it just pops into my head today while we drive home from the hospital. As you might know from the Venice Chronicles, my breathing hasn’t been great and you possibly read of the trials of My Best Vein as well. Today is the turn of the oncologist. As usual, the clinic is running late so we sit and wait patiently, allowing the volunteer to bring Mr Mason cups of tea while he flicks through old copies of Heat! and Now! When a breast care nurse appears to take us to see not the registrar but the oncologist herself, my antennae are really twitching. When the first words are something akin to “Have you been informed about the treatment plan?” we know we are in deep waters. The CT scans shows that there are some nodules in my lung and the oncologist is surprised I am still feeling pain in my trachea when I eat toast or something scratchy. Even tablets feel as though they get stuck. She thinks perhaps a throat man should have a look. Anyway, the plan is to admit me to hospital and drain the fluid off my chest. I am feeling better than I did last week and think that perhaps the fluid has almost been reabsorbed. Off to x-ray with me then, in case there is nothing to drain. Mr Mason nips out to put yet more money in the ticket machine while I get x-rayed and then whizz up to the 5th floor to book an echocardiogram. The clerk is nice and manages to squeeze me in on Tuesday which means that chemotherapy can go ahead next week as planned. Back to clinic 8 to see the x-ray results which show there is double the amount of fluid in my lungs there was last week. This is puzzling as I feel so much better than I did last week. A final wait for blood to be taken and then we are free.

Taking in this big news is hard. We do not skip into the clinic thinking all will be sunshine and roses. Whatever the results of the CT scan, we know the fluid has to be drained off but this news is much, much bigger and has a nasty sting in the tail. Secondary cancer, for those of you who don’t know, can be managed but not cured. The treatment plan is for 6 to 8 doses of Herceptin, Perjeta and our old favourite, Docetaxel. If that dampens things down, I will go onto a maintenance dose of probably the first two drugs to keep things at bay. This throws lots of things into question. Moving, for one thing. It also means hair loss which, though relatively trivial, is just another thing to endure. So it’s back to painting nails a dark colour in an attempt to keep them, dealing with a runny nose as nasal hair is decimated and finding natty ways of tying scarves.

In an attempt to show bravado today, I go to the hospital wearing mascara and a pair of trousers with skull and crossbones on them. Obviously I have other clothes on too, but later on Mr Mason and I share a very dark joke about the inappropriateness of wearing such a garment to an appointment when you are told you have incurable cancer. So yes, the humour is alive and well and still flowing freely. We have been knocked by this news but tomorrow we’ll be up and fighting again. On the way home, we go to the supermarket and stock up on essentials like toilet paper and cake, the latter probably being more essential than the former at the moment. It’s clearly a time to hunker down and dig deep. Please feel free to insert your own favourite metaphor.

Normal service will be resumed shortly.

My Best Vein

It seems like hardly any time since we were strolling across the canals of Venice but, of course, real life has a habit of crashing in. Not that the Vogalonga wasn’t real life – it was just an extraordinary slice of real life. So, we are not back more than a day before I am at the GP surgery asking the GP to listen to my chest. I feel breathless and it’s got worse since Venice. I have to say my GP practice is patchy when it comes to good service. On this occasion, a phone call late afternoon scores me a “come in at 6 and hang around” appointment which I am really grateful for. The doctor is one I haven’t seen for years and she’s very nice. She listens to my chest and tells me that one side is quieter which is apparently, not great. She orders a chest x-ray for me for the following day when I have an appointment for a bone scan anyway. By Thursday morning, I am feeling worse and ask Mr Mason to drive me to the hospital which, of course, he does. At this point I am having problems even holding a conversation and I have a pain in the middle of my upper back. I don’t have any problems locating the right department as I know pretty much where everything is. When I have had my x-ray, the radiographer says she will have to check with the consultant as to whether I can go home or not. What?? This I am not expecting and I really don’t want to be admitted. The doctor comes to speak to me and then speaks to the consultant and then comes back to say I can get on with my day but if I feel worse, I must come to A&E. I have the bone scan which I really dislike as the machine is so close to my face and, not being able to breathe properly, I already feel pretty claustrophobic. But then it’s all over, Mr Mason comes to pick me up and we go home.

The next morning Vanessa, my breast care nurse rings to find out how I am. I explain about the breathlessness (which she can hear) and the chest x-ray and the bone scan and she says she wants me to see the Oncologist the following Wednesday unless my breathing significantly improves. The consultant has also asked me to go to see the GP I saw last and get her to assess my breathing. I ask if I really need to do this and am told this is what the consultant recommends so I duly go to see the GP, this time accompanied by Mr Mason in case I don’t make it unscathed. The receptionist knows who I am as soon as I enter and tells me she has been on the phone trying to find the duty radiographer to get the results of my x-ray for the last 20 minutes without success. Eventually I get to see the GP whose office is at the top of a flight of stairs I negotiate slowly. She tells me the x-ray results have actually been sitting in her email but she hadn’t looked there. The main thing is, she has them now.

I have a pleural effusion which means there is fluid between the chest wall and my lung. Now, the thing about pleural effusions is that they are a common precursor to secondary breast cancer and that’s an area we really don’t want to go to. She listens to my chest and says it sounds similar to the last time she listened to it but to rest and rest some more over the weekend which I do. But it is very dull being the captive of the sofa.

On Wednesday I go to see the oncologist. There is a merry atmosphere in Clinic 8 (named so it won’t frighten the horses) as I find my friend Ms Cantini waiting for her oncologist and sporting a nifty 50’s style headscarf. We are later joined by Ms Marsden and Ms De Roeck who have come along to make sure neither of us is dead. I quite like the oncologist’s registrar. He looks like he would be useful on a rugby field. Anyhow, he listens to my chest and then looks down my throat using a special tool (the torch on his phone) and decides that on top of anything else, I have a fungal infection so there are more tablets to be taken and some medicine. The medicine the oncologist has prescribed is utterly vile. A mixture of vanilla and aniseed in a thick, viscous liquid. Yuck. He says that while we are in Clinic 8, the nurses will canulate me for my CT scan and take some blood at the same time. We can then go back after the CT scan to see what results he has got back.

My veins are a mess. It’s no point pretending anything different. They are crooked and spindly and have a propensity to sink and disappear whenever someone tries to mess with them. I have a trump card, though. It is my Best Vein and it lurks in the crook of my right elbow underneath a promising-looking but ultimately useless vein. In the room where they take blood, I point this out but first they want to try my hand. This is not working. As they feel around with the needle in my arm, I suddenly feel faint and they take the needle out and scrath their heads. I am a puzzle. My Best Vein is not working now. They have prodded and poked it so much it has gone hard and is refusing to play, added to which I am now sitting with my head between my knees and that weird “I am just about to faint” sound of voices coming and receding. They bundle me into a wheelchair and whizz me round to another room where I can lie on the bed as they try to get some blood. I have my hand plunged into a stream of hot water to make the veins stand out but this still doesn’t help. In the end they have the bright idea of asking one of the nurses from haematology to just take some blood so the nurses in the CT scanning department can canulate me. This is done and I am then on my way.

The CT scan does not take long at all. I hold my breath at the relevant moments and it’s all done. We find the stragglers from Clinic 8 are now in the cafeteria so Mr Mason and I join them so he can top up his blood sugar levels and I can have a drink. While we are there, something magical happens. When I was first diagnosed, I noticed a man working in the hospital who appeared to have knitted hair. Even in the depths of fear and anxiety, my gaze was drawn to this wonderful concoction perched on his head. Ms Mason tells me that when we were leaving the outpatients department after being Properly Diagnosed, she spotted the knitted-hair man (as I had obviously mentioned him to her as one bright spot in the otherwise gloomy news) but thought it a little undignified and a tad inappropriate to tug my sleeve and point him out. Since then I have not seen him although I always look when I go past outpatients. So it was marvellous indeed to see him sitting in the cafeteria where I was able to examine the hairdo in more detail. That, and try to take surreptitious photographs, of course. His hair seems to be rolled into two fat sausages which perch on the top of his head. The back of his hair looks quite normal. It is a welcome diversion from the day. I’m sure he is a very nice man but I find his hair utterly fascinating.

The blood test results are back, in part. It shows that my inflammatory markers are raised but this could be because I have a horrible infection so we are still none the wiser. On our way out of the hospital we spy Ms Cantini waiting for a taxi so we scoop her up, at the risk of her being blacklisted by the cab company, and drive her home, too. Apparently she has been entertaining the troops with impressions of she and I having a breathless conversation together. And apparently, it was a hoot.

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