For my sister, who always shows me so much love and keeps my fridge filled with food.
Recurrence: October 2012
The very sweet 12-year old looking registrar explains somewhat nervously that the CT scan repeated from six weeks earlier shows the cancer is moving aggressively and ominously towards my internal organs and that I need more chemo immediately. ‘What if I don’t want more chemo……?’. ‘Ermm, mmm’! ‘How long have I got, with or without more chemo?’ ‘Ermm, mmm, I don’t know, ermm, I have to ask the consultant and get back to you’.
‘No offence, and you seem very nice and everything,’ I say ‘but shouldn’t you be able to discuss these things with me? I mean, I am upset and I think you should be able to answer these life and death questions. If you can’t, it shouldn’t be you but the consultant telling me this stuff, don’t you think? I mean, if I was a dog, would you have me put down now or later?’
‘Ermm, yes, you are absolutely right! I’ll go and get the consultant.’ She is clearly flustered and anxious to escape. ‘You just stay here. Actually no, do you mind sitting outside her office and then she’ll talk to you, I’m sure. I am sorry, we are all really busy.’
My best mate has come with me. As we sit outside the consultant’soffice, I say to her: ‘We are going to go to Mexico. I know Mexico is the best place to get it. We are going to Mexico this weekend to get that stuff so I can kill myself. I don’t want to die a horrible insect, thin, baldy cancer death. I don’t want to die in horrible pain and not able to breathe……. I can’t believe I can’t get hold of a barbiturate in this country to kill myself. Maybe we can fly to Phoenix, pick up a car and drive across into a border town to get the stuff. I’m sure any old pet store will have it. I wonder which is the closest border town to Phoenix. It’s inhuman; it’s a disgrace we have to go to Mexico. We’ll probably get killed by drug barons.’
Like me, my best mate is upset and horrified by the news and how things have been handled by the inexperienced sweet 12-year old looking registrar and she wants to do anything and everything to support me, and make me feel better. ‘Ok, Jo, we’ll go to Mexico and get the drug, not a problem. I don’t think I have much planned this weekend. Shit, I don’t have my passport. I’ll drive up North and get it, drive back or maybe we can fly from Manchester, maybe that is quicker and easier. Do you think we should fly from Manchester or London?’
The consultant sees us quickly. She is clear, professional and lovely and apologises for what had just happened and tells me that statistically, I have three years from recurrence til death. I feel calmer and agree to more chemo, as she makes it sound sensible. I ask if I am medically well enough to go to Mexico. She looks baffled and asks me when I want to go. I try to look like I know and then turn to my mate, hoping she looks like she knows. ‘Tomorrow, this weekend, when I can get a flight?’ The consultant asks me if I plan to go on holiday, and that in her opinion I will not enjoy myself. ‘Yes, I would like to go to Mexico on holiday’. ‘Physically, I would say you are well enough! I am not sure about your mental state though’.‘Oh don’t worry about that’.
Counselling for End of Life Issues
It is February 2013 and I haven’t seen the consultant for four months and I have just completed my rounds of chemo for the second time and had a scan. I feel a little sheepish seeing her, believing she thinks I’m a nutter. In my embarrassment I stupidly remind her that I’m the patient who wanted to go to Mexico but didn’t. She looks baffled and I am sure she doesn’t remember and I am relieved. My cancer has not shrunk very much and I ask about my prognosis again. She tells me it will probably become aggressive again and spread by the autumn.
She suggests some counselling by Macmillan at the hospice, to deal with any ‘impending crisis’ though neither of us say words like dying, death, end of life issues or anything similar. Macmillan at the hospice says it all; I feel sick to my stomach.
What is worse is that my consultant is 8 months pregnant. I congratulate her though I feel completely disingenuous and resentful; it feels wrong that someone who is due to give birth is telling me I am going to die. I wonder how she feels, talking to me about this stuff in her condition. I don’t tell her about the barbiturate bought online from Mexico in the fridge. I don’t think she needs to know. Besides, it might affect her desire to treat me and I want her on my side to keep me alive although I worry how she will do this while on maternity leave and whether I will be dead before she returns.
The hospice, despite too much religious iconography for my taste, is a very nice, calm comforting place to hang out in and I take to my counsellor immediately. She asks about my fears, current support systems etc. As she is a therapist working in a hospice, I feel relieved that I will be able to talk to her freely about death and everything associated with it because it can feel like a taboo subject particularly now that I am in the terminally ill category.
Of course I am frightened, I don’t want to have cancer, I don’t want to die from it. I worry about my family, my friends, my cat. Mostly, I am preoccupied and terrified of dying badly, that I may be left vulnerable, confused, my organs packing in; I’m terrified of the pain and being breathless. I don’t mean to offend her or the hospice, it looks very nice and I notice it is very quiet which is good; no screaming people dying in agony, palliative care must work. I am sure that it is, or can be a great place to die. Only it really scares me that there are no end of life drugs that can be legally given to me in this country so that I can have a dignified death, when and where I choose. I wish it wasn’t illegal for my friends or family to be with me so that I am not alone, although I might want to be alone.
No, I don’t want to go to Switzerland to die legally. I have quite strong feelings about this. Why should I seek permission to die like a pariah on the outskirts of Zurich in some horrible corrugated-iron structure? How am I going to be well enough to go there to die anyway? Thank God I have the barbiturate in the fridge so at least I can believe I have some control in having a peaceful rather than an undignified horrible death.
My counsellor enquires more about my drug. I managed to get the stuff sent over from a drug supplier I found in Mexico through a website that supports assisted euthanasia. She’s gone a bit white. I try and reassure her. The drug supplier seems to have a good reputation. I am nervous but the bottles don’t look tampered with or anything. I’ve checked the company online and the bottles say in Spanish that the stuff is used for sedating or euthanizing large animals and I am no bigger than a small donkey or a big dog. It is a travesty that I am forced into this position. Even people on death row get properly cannulated and don’t have to drink the stuff. It is meant to taste disgusting. She says we need to stop the session immediately and I need to have a psychiatric assessment to see if I am mad before any more therapy can take place.
I am a little confused. I have to go back to my GP to ask for a referral and if the psychiatrist says I am not mad then I can come back for counselling? I try and argue that this may take time as the NHS is stretched and I might be dead before being referred back. The hospice needs to cover itself, she says.
I ask her if she thinks I am mad. Actually, she doesn’t think I am, but she doesn’t know me, and I might be. She says she would like to work with me but she needs to go and check where the hospice stands on the legal and the ethical issues and her supervisor will need to be present when I next see her. I say I don’t understand, as it is an end of life place and I am terminally ill, and she should know the ethical and legal status. Isn’t it reasonable for someone in my position to have an exit plan? She doesn’t look happy at being reprimanded and impatiently says that of course it is fine to think about dying, that it is quite natural, but it is not natural to plan your own death. No one reveals a plan. I say: ‘I think this is ridiculous.’ She says we need to stop now.
The Doctor’s Surgery
I tell my GP that I want it recorded that because I have a terminal illness, I am thinking about killing myself and that in the fridge, I have the means to kill myself. If I kill myself I want it to have been recorded. I want to protect my friends and family from a police investigation should it be suspected that they helped me to die. Oh, and the hospice says that I need to see a psychiatrist who will sign me off as being sane before they can give me therapy and she, the GP, needs to get me a referral. She looks at me kindly and asks me what I think about this and I feel very grateful that she is looking at me with compassion and has asked me this sensible question. I tell her I think it is ridiculous and a waste of time and NHS resources and in my view, I am not mad. She nods her head in agreement and then asks me how I might feel if she did get me a referral, even if I saw the psychiatrist once so the box can be ticked. I agree. She calls the psychiatrist and the psychiatrist says this is ridiculous and she doesn’t want to see me! However, my GP says if I want to see the psychiatrist who is very nice, I can see her. I say I don’t.
Back at the Hospice
So, I am officially not mad, but my counsellor has brought in her supervisor who is telling me that in all her fifteen years of being at the hospice, no one has presented as I have. People think about death but they don’t have plans, and they certainly don’t reveal their plans. I say that I don’t agree. There are probably people stocking-piling morphine drugs from the chemo ward as we speak, and the hospice should create a culture where people can be more open about this. She says people are frightened to talk about death, they want to live, they want to talk about life. I say I want to live, I want to talk about life, but it is a problem talking about a good life if I can’t also talk about a good death. Maybe palliative care can offer me this, but maybe not and I want the drugs and the people around me to ensure I have choice and dignity. I know this is against the law.
I’m taken back to section 28, and the 80s and 90s when we were told we couldn’t talk about being gay. Gay teachers became fearful of their own shadows. I wonder if by talking like this I am stressing my counsellor and her supervisor out, and they are becoming frightened of their own shadows? I wonder if I am frightened of my shadow? I know that I am not feeling very relaxed, in fact I am feeling very weary and I really want to talk about death and maybe the hospice isn’t the best place for me to do this and I should go somewhere else.
The Death Café: June 2013
One of my friends is trying to cheer me up by suggesting that we go to a Death Café. I have never heard of them but he says they are springing up everywhere and people go to talk about death over cups of tea. I am intrigued and touched that my friend wants to take me to one.
There are about 40 people gathered at the café, sitting around tables in small groups. My friend and I sit together at a table and a few more people of mixed ages come to join us. A woman walks in holding a glass of red wine and sits opposite me. I can’t tell if she is 60 or 80 but what I can see is that she has incredible poise and the most handsome wonderful face that warms mine, like the sun.
The facilitator is asking people to imagine what their deaths will be like. The facilitator says that how we imagine our death is how we think of our lives. I’m not convinced but I give it a go. I try to imagine the wonderful smell of baking bread in the oven whilst people around me chat quietly as I go to sleep. But all I can really focus is on my own terror. Is it possible for faecal matter to come through my mouth? Will I be fighting for my last breath? I can’t bear it. Will I be aware of that death rattle? Someone is saying she would like to die in her favourite cotton sheets. Someone else says he is listening to Bach as he slips away.
The woman sitting on my left is staring at me and making me nervous. She has been staring at me ever since I shared that I have a terminal illness and an illegal drug in the fridge. She needs to tell me that a hospice is a wonderful place and she has observed many wonderful peaceful deaths. She has to let me to know that it is a privilege to watch people die. I am beginning to feel really claustrophobic and worried that this woman wants to take me to a hospice and hold my hand while I die. I’ve got to get out. Luckily, the facilitator is bringing the session to a close and she tells everyone to come together and ask any questions they have in the big group. I have a question for the big group. How many people have come to the Death Cafe because like me, they have a terminal illness? No one raises his or her hand. I feel utterly crushed and utterly alone.
A woman approaches as I am about to leave and tells me she is very much looking forward to meeting me again as she feels she can learn so much from me because I am in such a unique position.
Exit International Workshop in London: June 2013
I almost fall to the ground to kiss it when I walk in. These are my people and I feel so relieved to be among them. There could be as many as a 100 of us in the room and we are all here to learn about peaceful methods for dying from a very brave man, Dr Philip Nitschke who started Exit International in Australia. My friend, Cathie, has come with me for support. One of my sisters, who has had her own brush with cancer and also enjoys these sorts of events, comes too. Dr Nitschke takes us through the different methods for a peaceful death. As I’m only interested in using a barbiturate, I decide to leave after this presentation to get a bit of lunch with Cathie. My sister is eager to stay to watch the film ‘Do it yourself with Betty’ where an 82 year old woman called Betty shows you how to kill yourself with a plastic bag and helium. The film is a big hit with my sister.
Outside, protesters are dressed in long black robes and disguised in skeleton masks. Cathie yells at them, calling them cowards because they are not prepared to show their faces. The least cowardly takes off her skeleton mask and looks so terrified that I almost tell her to put it back on again. I ask her what she is doing there and she says Dr Nitschke is showing vulnerable people how to kill themselves. I say, on the contrary, Dr Nitschke is empowering those of us inside to die with dignity and it is our draconian law in this country against assisted euthanasia that is leaving us vulnerable.
A woman steps forward who explains she is a lawyer for the protesters. I ask her why is she is so invested in telling me how I should die. She tells me we have to protect the vulnerable. I am feeling absolutely furious. ‘What right’ I ask her ‘What right do you have to tell me how I should die from ovarian cancer?’ She answers that her sister died from ovarian cancer and fought for her very last breath! I am absolutely stunned. Every breath fought for? Every last breath fought for? This is madness! We both stare at each other but her face is full of grief and I suddenly feel desperately sorry for her and want to hug her instead of punching her.
My blood pressure and finding a vein: November 2013
I’m very grateful for the treatment that I am receiving from the NHS. On the whole it is extraordinary, but today is not a good day on the chemo ward.
I have White Coat Syndrome, I’ve always had it. Whenever I am in a GP surgery or the hospital my blood pressure shoots up. I hate the blood pressure monitor; I hate the noise it makes, the whooshing and the beeping and I hate the feeling of the pressure on my arm. Terminal cancer is a bad fit for me because I have to go to the hospital all the time and have my blood pressure taken all the time and I have to watch and hear other people having their blood pressure taken all the time and I absolutely hate it. In fact I even hate writing about it.
I am trying to help myself by having a blood pressure monitor at home. When I am relaxing, watching ‘millionaire matchmaker’, it’s absolutely fine; it’s not that high, certainly low enough to have my medication at the hospital.
I’m on a three weekly intravenous drug called Avastin. I am very lucky to have it on compassionate grounds and it has contained my cancer until now and I know that it is saving my life. The idea of being taken off Avastin feels unbearable.
My veins are getting thinner from all the chemotherapy, intravenous drugs and blood tests and sometimes it takes as many as four or five attempts to find a vein so that a cannula can be fitted. Every time I come into the chemo ward it is harder for the nurses to find a vein. In turn this affects my anxiety and my blood pressure goes up even more.
Today my blood pressure is higher than it has ever been before. I know it must drop for the nurses to give me the precious and very expensive Avastin, over £1500 a pop, I hear. Often the nurses have laughed that I have such a problem having my blood pressure taken, given I am so healthy apart from having terminal cancer. I can laugh too but today it certainly isn’t funny. In fact, this feels like the worst day of my life.
Hoping my blood pressure will fall, the nurses carry on preparing me to have the Avastin. After a few tries I am successfully cannulated and attached to the pole with the Avastin in a bag, tantalizingly above my arm but not yet being fed into my vein. A nurse says that she will come back in half an hour so I have time to relax and then she’ll take my blood pressure again; she’s sure it will come down. I know this is not going to happen; I’m too anxious I won’t get my drug, my blood pressure will not come down, in fact it will go up.
The nurses want to give me the drug. They know what I’m like. But they can’t while my blood pressure is this high without permission from the doctor on call. I say, ‘Call the doctor then’. I can feel my blood pressure getting higher and higher. We wait for the doctor to give his decision. A nurse returns to check my blood pressure and it has gone through the roof.
My best mate calls. She never normally calls when I am having my Avastin. She says,’I don’t know, I just had a feeling’. I reply, ‘They won’t give me my Avastin’. ‘Do you want me to leave work and come over?’ ‘No, wait! The doctor is calling back’.
One of the more rogue nurses who normally isn’t such a stickler for rules comes over. I beg him to turn on the machine so I can get the drug. He says he will turn it on if my blood pressure is trending down. He takes the blood pressure again and it has gone down just a little. I know it is not enough for him to give me the drug according to the rules. I say to him, ‘We had a deal’ and he laughs and says, ‘ Ok’ He’s giving me the drug! I could kiss him. My best mate calls again.
‘It’s ok, you don’t have to come. I’m getting it now’, I say and I start to read my book. A nurse comes over and takes my blood pressure and she remarks that indeed it is coming down. Ominously, she adds, ‘And soon it will be low enough’. What does this mean? I look at the bag. The drug isn’t being fed into my arm at all even though it is connected to the cannula in my arm. I panic and call my best mate. ‘They pretended to give me the drug to calm me down.’ ‘Ok, I am coming down, I’ll be there as soon as I can’.
All the nurses have disappeared. I get up and wander through all the wards. I am wheeling my Avastin on its transportable pole and begging any nurse I can find to turn the machine on so I can start getting the drug. They scatter even more. I am crying and shaking, pressing random buttons on the machine hoping I can turn it on myself.
A brave nurse finally comes and tells me the doctor on call has told them they are not allowed to give me the drug. I demand to talk to the doctor on the phone. They give me the phone and my heart sinks when I discover it is that registrar on the phone, one with whom I’ve already had a tricky time. I know I’m fucked.
‘It is very nice to speak to you again’ he says. There is absolutely no way that this could be more opposite from the truth.
‘I want my drug’! ‘ I’m really sorry, we can’t give it to you. Your blood pressure is too high and we are worried you might have a stroke. I suggest you go home and take your blood pressure at home and if it is low enough you can come back on another day’. ‘I know my body and I’m just terribly anxious because you won’t give me my drug and it will never come down until you give it to me’. ‘I’m sorry, you can’t have it today’. ‘You are not listening to me or my body. I want my drug’. ‘Well, I am sorry, you can’t have it today. I suggest you go home…..etc’. It is nice that he suggests I go home. Where else would I go? ‘I’m not leaving until I get my drug’. The phone goes dead. No nurse comes near me. I feel abandoned and in despair.
I’m trembling and feel I probably am going to have a stroke. But over my dead body am I leaving the hospital without being given my drug. I get up and drag my pole with my Avastin to the nurses’ station. The nurses are all gathered around talking in hushed tones and look a little nervous as I approach them though I have calmed down and look less potentially violent. One of them suggests that I go over to the clinic to talk to the consultant. I can’t believe my luck that the weekly medical oncology clinic is taking place as we speak. The nurses take off my Avastin, which I make them swear they won’t touch. I waste no time in running over there.
I am absolutely thrilled to see the consultant, returned from maternity leave, no longer pregnant and looking damn hot. I don’t stop babbling at her, talking over her, insisting that I am not going to leave without my Avastin. She doesn’t get a word in edgeways but completely floors me when she offers me a mince pie. Absolute Genius! I shut up and start eating. ‘I’m going to give you the Avastin’ she says.
She makes me promise that I will regularly record my blood pressure and bring in the readings from home. She promises that I will no longer be tortured by having my blood pressure taken at the hospital. I tell her that I can’t bear to see another registrar. I plead with her to be mine and she says, ‘Of course, if you want me, you only have to ask at reception.’ At this point, my best mate bursts in and breathlessly tries to explain to the consultant that I hate having my blood pressure taken. I feel irritated that she has ruined an intimate moment.
As I skip back to the chemo ward I bump into that registrar, the doctor with whom I had spoken to on the phone, standing with his hands in his pockets who asks ‘So, what is it to be?’ I answer, very slowly so that he is in absolutely no doubt about what is going to happen. ‘I’m going to get it. She’s going to give it to me’. Then I am overcome with an incredible urge to do a little jig around him. I don’t care what his reaction was.
Back at the chemo ward, the rogue nurse is waiting to attach me to the pole and the machine so I can finally have my drug. He is looking very smug. I ask him what he is smiling about. He says they all took bets as to whether the consultant was going to allow me to have it and he won a tenner.
It’s January 2014 and the scan results reveal the cancer has spread to my glands and lungs. My consultant tells me that the cancer has broken through and there is no further point in giving me the Avastin. More chemotherapy will probably not be very effective. We talk about palliative care and pain relief. I ask her what her thoughts are on assisted dying. She says that no one has asked her this question before and she needs to think about it.
As I am being weighed, the nurse asks if I would like a copy of the letter from my consultant to the GP sent to my home address. I say I don’t want a copy and have routinely said I don’t want a copy. Two weeks later, when the copy arrives, I wait anxiously for my best mate to come home to open it.
My best mate assures me that the letter doesn’t contain anything different to what the consultant has told me in the room. ‘So I’m just fucked, right?’. My best mate says, soothingly, ‘It says nothing different to what you heard her say to you, Jo. You know exactly what it says!’
Telling my parents
Many years ago I saw a Woody Allen film where he is considering suicide but he can’t do it without killing his parents first as his death would be so devastating for them. I think killing my parents first is an excellent idea and it is reassuring to think that I can check how the barbiturate works on them before I take it. My father and mother are 91 and 88 years old respectively. My mother fell over at Christmas and broke her pelvis and is only just getting over it and my father shuffles and lurches in a way that has us all running for cover. It can only get worse. I try and discuss the idea with one of my sisters, maybe make a party of it as our parents like parties, but she thinks this is a terrible idea and says that I am nasty.
Anyway, even though they have been phoning me most days I have been trying to avoid them and my poor sister has acted as go-between, drip-feeding them information about my deteriorating health. It’s not fair on her. I have to talk to them directly. I call them up to arrange to see them. I tell Mum I have something very serious to talk to her and Dad about. Mum puts it in her diary that I will be coming around at noon the following day and we both know that the following day’s conversation is going to be very difficult.
I arrive and John is there. John is their trainer. John helps mum with her exercises for her pelvis and boxes with my dad on a regular basis. Mum has double-booked me with John and when I arrive he is boxing with dad. She’s flustered and asks if John can stay and box Dad while we talk. ‘No, Mum! I need to talk to you both alone’. Mum is mortified. What is she going to say to John? She has just offered him some lunch.
I take matters into my own hands and ask John if he will leave and come back later. Of course John can leave, see another client and come back later to eat his lunch.
The three of us are in the room sitting alone together and after the comedy and chaos we fall silent and they both look at me. At 51, I am aware that this is the first time I feel like an adult in the company of my parents and being an adult feels like keeping it together in front of my Mum and Dad while knowing all our hearts are breaking.
‘I’m very sick. I don’t know how long I’ve got and I will try and live as long and as well as I can but I promise you that I will not suffer. I have the means so that I won’t let that happen. I promise you’. They nod that they know and that they really don’t want me to suffer.
We fall silent again and Dad falteringly says he supports me with what I want to do, he wants me to know he loves me very much. I tell him that of course I know that and his generosity throughout my entire life has helped me get through so much of this.
I ask my Mum if she thinks about death. She says she finds it hard to think about it because she lost both her parents before she was 4. I ask my Dad too and he says, he doesn’t find it hard, just as long as he has everything in order.
My Mum is looking at me very intensely and says that I am an angel, she has often thought so and that there is some smoked salmon in the fridge and would I like to take some home with me?
Letter to my consultant
I wanted to thank you for talking to my mother, which was so helpful and important and for giving me my results with such kindness, honesty and clarity. It made such a difference to me.
I want to live as long as I can, as well as I can, and I know your objective is to help me to do this. I really appreciate you giving me the opportunity to think about the options you outlined for further treatment for relief of symptoms and perhaps some extension of life.
My overall desire, as I am sure is true for everyone, is to live well and to die peacefully. I love my life and I want it to continue, but not at all costs.
As you know from our conversation, I have been thinking that assisted euthanasia is going to be one of my options at some stage. I asked you what you thought about it. You told me that you have not been asked that question before and need some time to think about it and to find out more.
This option has been in my thoughts since my diagnosis and so something I have given deep and careful thought about. As you know, I am a positive person who has willingly undergone all of the treatments you have made available and I am so grateful that over these last 3 years, I have had many long periods of good quality living. I see the option of assisted euthanasia as an exploration of another positive option – where I can feel I have the opportunity to ensure that my passing is peaceful.
Thank you again for everything you are doing for me.