Serious illness has forced me to think hard about how I spend my remaining time on this planet and what I really enjoy about life.
This is my list. What would you put on yours?
My family & friends
Being a doctor
Lazy Sunday mornings with no alarm clocks
Cuddles with my nephews & niece
Podding peas in my parents’ garden
Strawberries and cream
Crunching autumn leaves
Exploring new places
Going out for dinner
Clean bed linen
I should wish you a merry Christmas and best wishes for the festive season. But as you’ve recently decided to wake from your slumber and cause no end of disruption to my life, I’m not sure I can find it within myself to wish you well.
I already knew what the images would show as I assumed the position, lying down with my arms above my head on the scan table, and felt that familiar warmness rushing through my body as the contrast was injected. The symptoms of abdominal distension with colicky pain and the distinctive fatigue that never resolves with sleep are such objective measures of your progression, I hardly needed the scan’s different shades of grey to tell me you were on the move.
What is it with you? Could you not face seeing me happy and contented professionally? I know you; you thought you’d wait until I’d settled into my new job then make your move; striking just before Christmas and forcing me to keep it from my family to avoid ruining everyone’s fun. I never thought I’d be able to be a Consultant. My Acting Up job is wonderful, immensely challenging but so fulfilling. It’s all I’ve ever wanted to do. And you’re going to steal it; seizing all my professional dreams and dumping them firmly in the bin.
And now I am faced with the arduous task of having to break the news of you to everyone. The pain etched in my poor Dad’s eyes as he struggled to hold back the tears was almost unbearably painful to watch. The break in my Mother-in-law’s voice as I imparted the terrible truth over the phone made my tears flow uncontrollably but silently.
Last time we were in correspondence I told you I had some things to do that you were not going to get in the way of. Well you I’m pleased to say you didn’t; I’ve cuddled my brand new niece many times and had the pleasure hearing my youngest nephew call me “Aunty Kate”; I’ve jumped out of a plane from 10,000 ft; I’ve somehow acquired two Fellowships; I’ve been taught how to make brioche by the wonderful Michel Rous Jr; we’ve continued to work hard with the fundraising for the YCC; I’ve spearheaded a campaign to improve patient experience across the world which has received so much positive recognition. Considering I should be dead by now it has been quite a year…
As is tradition I will conclude by wishing you a happy New Year. I am about to confront some of the most challenging decision making I have had to on this incredibly tough journey. I’m not sure how I will. Do I give the poisoning another shot? Or do I bow out gracefully now? Will treatment have an outcome that we will be satisfied with? How bearable will the toxicities be? Nobody can answer these questions for me and to coin one of my favourite phrases “no one has an accurate crystal ball”. 2015 is likely to be the year you finally get the better of me, but at least I can look back on a life well lived with a true purpose. I’m really scared so please be kind in the way that you decide to take my life.
Charlie. That was what we planned to call our first born in honour and remembrance of Chris’s paternal Grandfather. But Charlie will always remain in our dreams and never become a reality. I will never have those precious new-born cuddles or experience the wonder of childbirth. I’m not bitter about this but I am sad; really sad. I can’t change it. I can’t erase that sorrow and have to carry the burden of it around everywhere I go. The cancer stole most of my fertility as it grew inside and destroyed my ovaries; the intensive chemotherapy finished off any hopes that we would ever have children.
I am at the age where I am surrounded by babies and pregnancy. My friends are all starting to settle down and start their own families. And I have to try so hard to be outwardly happy about this and share in the excitement of those closest to me. But inside I’m crying. I’m grieving for a life that will never be.
It sounds so utterly selfish but these feelings are sometimes so overwhelming I avoid children because I’m scared I will be unable to maintain my public composure. Sometimes I struggle to hold back the tears as I play with my nephews or cuddle my brand new niece.
So not only am I a menopausal woman at the age of 33 but the cancer and the treatment has also pilfered much of my sexuality. I don’t ever feel sexy these days. I have major body image issues. I find it hard to let Chris near me. My body has become this ‘thing’ that gets examined, scanned and poisoned; examined, scanned and poisoned. It’s almost like it’s no longer part of me. It’s scarred and disfigured. No matter how pretty the dress is I don’t feel pretty anymore.
Sex is not something they talk about when you are counselled for cancer treatment other than ‘don’t do it and make sure you don’t get pregnant’. My sexual identity seemed to slip gradually away during the early days after diagnosis and now it’s gone. I guess my hormonal profile isn’t helping the situation either.
In some ways I’m very grateful we didn’t have children when I see the pain that is caused by a parent dying from cancer. At least that will not happen to Chris and he will be able to concentrate on his own grief. But just because I’m dying of cancer I’m still a woman, I still have those maternal desires that most women have.
I would have liked to have met Charlie; to have held him; to have fed him; to have played with him; to have seen him grow up….
It’s hard to miss this topic which has exploded in the media again this week. The lady in front of me on the bus home on Wednesday was reading the Daily Mail. The headline “Do you want us to let you die?” was brandished across it above a large photo of Cliff Richard. Luckily I’d learned about the story the previous evening from Twitter. It pertains to the experience of Mrs Lilley, Roy Lilley, the health policy analyst’s mother, who had had a recent negative experience when a district nurse visited to discuss Advance Care Planning, including the ever emotive topic of resuscitation.
I made my own decision not to be for cardiopulmonary resuscitation the day after I discovered my cancer had spread to my liver and bones. I wanted it to be clearly documented at a time when I had full mental capacity that I did not want to go through a futile, brutal treatment that was never going to somehow magically take my cancer away. I have a pelvic malignancy so the chances of me dropping dead from a pulmonary embolism are fairly high. I have also in my time been very ill following chemotherapy with serious infections, again another risky time.
There is no way I would like to have my chest exposed while somebody attaches large electrodes and does chest compressions. Another member of the team would most likely put a tube down my throat or use a tight fitting face mask to ventilate my lungs. Somebody else would no doubt be digging around in my arms with needles looking for a vein to insert a cannula, which because of the situation and my past history would be very difficult. I would also probably suffer the indignity of someone exposing my groins while they tried to take blood from the large artery there to assess my oxygen levels. There would be lots bleeping and raised voices. Depending on my heart rhythm I may need electric shocks in an attempt to restart a normal rhythm. The voltage used is so high that patients physically jerk as the shock is delivered. Drugs such as adrenaline may be administered. There would be empty packets from the equipment discarded on the floor around my bed. The picture I am painting is, even in the most well run cardiac arrest call, of a chaotic scenario and cannot be aligned in any way to my vision of a peaceful death. Because when resuscitation is used the patient has died. Their heart and lungs have stopped working. In the majority of cases we are not successful. If we do manage to re-establish a heart rhythm then the risks of the patient having suffered a hypoxic brain injury are high.
I talk to patients and their families about resuscitation every day I work. I look after frail, older adults and it is a question we need to consider very frequently. Some people would argue a question we should consider for everybody. In our population success rates are even lower with chances of surviving to discharge from hospital in the pre-morbid state even lower again. The risks are higher too. Anyone who has done chest compressions on a frail patient has probably felt that terrible crunch as you break ribs. Cerebral hypoxia is more common too as the blood supply to the brain is less good. This may manifest as agitation or coma.
Of course how these conversations are handled takes time and requires sensitivity. It should be a conversation, not just a tick box. Previous knowledge and opinions should be sought, information should be given, thoughts and ideas elicited and ideally both parties will agree. It is important to emphasise that a DNACPR decision does not mean we are going to stop actively treating the presenting health problems. It is also important to agree when a decision should be reviewed as with most things in Medicine it does not have to be set in stone forever more.
But we do as a society have to accept that some health conditions are incurable. That as we age our bodies do eventually wear out. We are all going to die, nothing in life in more certain. Whether the media want to make us all more frightened of this fact is their business, what I want to focus on as a clinician is achieving comfortable, dignified deaths for my patients when that time has come and hope that somebody will do the same for me when it’s time for me to meet my maker too.
Usually I would start penning a letter to someone significant with “how are you?” or perhaps “hope this finds you well”, but both of these conventional niceties seem wholly inappropriate when writing to you. I don’t particularly want to know how you are doing and I certainly don’t want to encourage your well-being. It has now been three years to the day since we kicked off this unusual relationship of ours and I figured I should mark this latest and unexpected cancerversary by recording some feelings and reflections.
Three years. Who’d have thought it? Three years ago today I was lying on a trolley in an American ER being put through a battery of initial investigations. I was in horrendous pain. My kidneys had given up the ghost. I left my dignity at the automatic doors of the hospital as I underwent the necessary intimate examinations. Scared doesn’t even come close to describing my emotions, as I processed all the clinical information and the terrible, unimaginable truth began to dawn on me. Yet constantly through all this I was forced to maintain the strong public face for Chris and shield him for as long as possible until we knew for sure what we were dealing with.
I will never forget the breakdown in John & Jen’s garden just a few hours after I was discharged from that very first hospital admission. I cried so hard my whole body trembled. I cried until I had no more tears. Why had you come along to ruin our lives? Abolished dreams of having my own family? Stolen my lifelong ambition to become a Consultant Geriatrician? Chris and I would never grow old together and be able to spoil our Grandchildren… My hopes for life before you arrived really were that universally simple – a happy family and success in a career that I loved.
In the beginning I thought about giving in and letting you take my life. I thought long and hard about taking my own life. But from somewhere inside, I’m not sure where, I found the strength to get through to here. However crazy it sounds all I wanted to do was go back to work; see another patient of my own; be normal again. And I defied the odds to make that happen. Do you think you could find it within yourself to let me get to March next year? Because on the 7th March provided I have no more sick leave I will complete my training. I’ve never wanted my CCT quite as much as I do now. I know I will never be able to work as a Consultant and let go of that dream ages ago but this small personal achievement would mean the absolute world to me.
So here we find ourselves in no man’s land yet again. We’ve been here before haven’t we? You’re that ugly gremlin sitting on my shoulder waiting to give me a firm prod at the first opportunity. For the past few weeks I have started to feel more pain and more fatigue. Every little twinge makes me wonder whether it’s you. I’m not sure I want to get back in chemo boxing ring again. I’m not sure my body can take it. I’m running out of the inner strength that has sustained me for so long and my bone marrow is certainly starting to complain.
I don’t know if I’ll still be here to write my fourth cancerversary letter. I suspect I probably won’t so let me conclude by saying it has been quite a rollercoaster getting to know you over the past thirty six months. You’ve forced me to stop and reassess everything about my life; my priorities; my ambitions; my wishes. You’ve made me into a better person; a more considerate one with far more patience; hopefully a more empathic and patient-centred doctor too. You are the reason for us having to concertina our fifty years together into just a precious few.
But for now all we can do is to keep looking forward one day at a time. I have a University course to complete, a skydive to conquer, £250000 to raise for the Yorkshire Cancer Centre and a brand new niece to meet in early October…
Well, it has been a few months since we were last in correspondence and given this past week’s events I thought it was an opportune moment to put pen to paper again.
I don’t mean to be rude but you didn’t bloody keep your side of the bargain did you?! I asked you really politely to let the chemotherapy subdue you and help me to feel less pain. All you had to do was in essence lose a little weight and go to sleep. Then we could have continued our symbiosis for a good while longer. But you didn’t want to play did you? No doubt for your own dubious reasons.
Scrolling through the CT pictures detailing every nook and cranny of the inside of my body on Tuesday left me feeling deflated to say the least. Perhaps more accurately an overwhelming feeling of “what was the point of all that suffering?” You were almost laughing back at me. I didn’t want to see any lymphadenopathy, but no, my pelvis was full of it. I wanted to see smaller pelvic masses, but no there they were, chunky as ever. At least you had let the disease in my left upper quadrant gently melt away as I am really not ready to have to endure a bowel obstruction quite yet.
I’m now trying my absolute hardest to stop regretting choosing to poison you again. I made the best choice for Chris and me at a time when I was stuck between a rock and a hard place. There were no easy answers or solutions. How does one choose between probable rapid death or a toxic treatment in the full knowledge of how horrible the experience of undergoing that treatment will be? And I know I can’t rewind and repeat the last few months. I guess I’m just being greedy and had hoped for more. I hoped the chemotherapy would help me more than it has. I hoped I would be opioid free by now but remain as dependent on the hardcore drugs as ever. I hoped I would be closer to being able to work again but every day I wonder if that goal is slipping further and further from reality.
So I’ve definitely taken one step closer to the end. Second line treatment complete. Third line treatment options massively limited. A battered body struggling with fatigue, pain and riddled with infections that may or may not resolve. Being positive though, through tear filled eyes there are also some exciting things I really want to live for on the horizon. I’m not going to let you stop me achieving those goals. I wouldn’t give you the satisfaction. After June though I think it may be time to hang up my stethoscope and let you do to me what I wanted the chemotherapy to do to you. My internal desire to keep on keeping on is slowly but surely ebbing away the more suffering I accumulate. Who knows what your plans are for my demise, but please be gentle and consider how much I’ve already been through…
I would like to finish by reminding you when I die so do you and then where will you be?
Well it’s been a good few months since I wrote to you when I took the incredibly difficult decision to resume our relationship back in November. It’s not been an easy ride has it? As I wait for you to cast your spell over my bone marrow for the final time I just thought I’d reflect.
Returning to your poisonous grip was, I think one of the most difficult decisions I’ve ever made in my entire life. Knowing that I would be rendered mutilated and incapacitated by your effects, but also fearing on the other hand what cancer had in store for me. Talk about a double edged sword! After round one was just like every other encounter we’ve ever had I decided a time-out to visit California and enjoy a proper family Christmas was in order. That time did me the world of good and gave me the strength to carry on seeing you.
Each time we meet it seems to be getting more difficult and my poor battered body is taking longer and longer to bounce back. The febrile neutropaenia in January was pretty bad, but the febrile neutropaenia in February damn near finished me off. I’ve never been quite so frightened that I might actually die before and perverse as it sounds it seemed a shame to die from sepsis when the cancer hadn’t got the better of me. But recover I did. That recovery has been slow and frustrating though.
So this week we ended our relationship again. Four rounds of huge doses of you is quite enough for me. The early clinical signs are encouraging that you have done your job and killed some cancer cells, although it will be some weeks yet before we see my scan results and the measurable, tangible effects on my tumours. Were you perhaps annoyed with me for walking away again? I only ask because the colicky abdominal pain I have had to endure this week seemed like you expressing your anger. At one point in the early hours of Tuesday morning I could have quite easily jumped off the proverbial cliff and silenced both you and me.
I’m just so bored of all this now. I’m bored of having to sit down while I cook. I’m bored of not being able to go for a proper walk. I’m bored of feeling sick. I’m bored of not being able to work. I’m bored of being too breathless to play my flute. Try as I might to stick two fingers up to both you and cancer I just feel so hemmed in and stunted by your effects. It’s ridiculous that I can’t run up the stairs. I’m 32 bloody years old. And I don’t want to be like this anymore.
I reckon it will be Wednesday when the fever strikes. I’m sure you’ll be looking on with glee at my suffering and no doubt my irrational hospital phobia will kick in yet again. But a few days of meropenem, fluids and GCSF and we’ll be done. Who knows how long cancer control will be this time round and whether we meet again in the future will depend on a huge number of variables.
So thank you for putting the brakes on the cancer; I’m only sorry that has been at the expense of ruining my quality of life for the past five months. I’ll leave you to pick on some other poor soul while I concentrate on getting fit again and back to some semblance of normality. I fear that may take me longer than I hope.