Charlie

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….

What’s the deal with Resuscitation?

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.

Dear Cancer Part 4

Dear Cancer,

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…

Best wishes,

K x

Dear Cancer Part 3

Dear Cancer,

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?

Best wishes,

K

Dear Chemo Part 2

Dear Chemo,

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.

Kind regards,

K

A Toast For Kate

Unusually this post is not written by me, but I was so touched by it I wanted to share. It is written by the super talented poet Kate Fox… (@katefoxwriter)

 

A Toast For Kate

 

Everyone knows they’re going to die one day

but society tries hard to duck it

so we need stubborn truth-tellers who will sparkle and shout

before they kick the champagne bucket.

 

That is what you are –

an ordinary Yorkshire lass

let us toast your extraordinary story

and hold up a fizzing glass.

 

You are baffled when they call you brave

or inspiring or heroic,

you are carved from true Yorkshire grit,

like the phrase “Pragmatically stoic”.

 

But to inspire means to breathe in

and you inhale your life to the full,

determined to live for the moment

to avoid the flat or the dull.

 

You may not get the longest span 

but you fight hard for quality of life-

as a Doctor, author, fundraiser, friend,

colleague, daughter and wife.

 

You talk truth to cancer

write honestly to death

expire down to earth wisdom  

with every remaining breath.

 

Who would want a Doctor as a patient?

But you’ve turned it into something new

your Doctor and your patient

have learned and taught from a different view.

 

A dying Doctor still caring for others-

people say “I couldn’t do that, if it was me”

but if work can fire you up like yours does

why stay in and watch daytime T.V?

 

You have spread your message on paper

from the Other to the Bright Side

and your words multiply like dividing cells

and have now been heard far and wide.

 

On radio and telly and Twitter

urgent things on healthcare to say

and now thousands follow your journey 

and #Havejustcheckedkate every day.

 

#Hellomynameis has gone viral,

four words key to a whole way of being,

the patient at the very centre of care

an introduction, a new way of seeing.

 

An appreciation of how the little things

matter so much to a person in pain,

and the big things like being in control

and getting your life back again.

 

You hate being seen as weak

I’m not going to say that you are wrong

but sharing feelings of fear and shame

are another way in which you are strong.

 

Helping us accept that the end is inevitable

that living is doing more than simply survive

that some treatments cancel the benefits

of a few extra days being alive.

 

But showing there’s no perfect moment to leave

when there are so many bubbles left to drink

and so many stones still to skim over the sea,

so many new thoughts to think.

 

You still have words left to write

and people left to reach 

and trips in reality and imagination,

that happy place on a Shetland beach.

 

So many brownies still to bake, 

so many hugs to receive and to give,

so many sunsets still to enjoy,

at least ten other lives to live.

 

Your followers urge you on day by day

as you tick off your bucket list

but when somebody so alive is going to die

it’s hardly enough to say you’ll be missed.

 

More of us know your story than have met you

are not looking forward to the day when you’re gone

though we will have your words to go back to

and those hashtags will be living on.

 

We’ll continue having conversations you started

until we too run out of breath,

carers and patients living your legacies,

allowing others to have a Good Death

 

Everyone knows they’re going to die one day

but society tries hard to duck it

so we need stubborn truth-tellers who will sparkle and shout

before they kick the champagne bucket.

 

You are one of those-

an ordinary Yorkshire lass

I’m toasting your extraordinary story,

holding up a fizzing glass.

 

The call buzzer and me

“Just buzz if you need anything.” That is the all too familiar sentence from a nurse as they leave your room in hospital. You hear that instantly recognisable sound of the call bells almost engrained in the air when you walk on to a ward. (It is less apparent on a really well run ward in my experience.)

I have spent the equivalent of nearly four months of my life as an in-patient, yet I have probably only ever pressed my buzzer maybe five times.

Why my reluctance to ask for help?

Firstly I think it is intimately connected with my fierce independent spirit and desire to maintain this for as long as possible. By pressing a buzzer it somehow feels like I am giving in to the patient role together with its associated dependent state.

Secondly I fear the reaction of whoever answers it. When in doctor role I have observed nurses and HCAs reticent about the patient who buzzes all the time. I will always remember the first time I ever pressed my buzzer in hospital. It was a couple of days into my first admission to the Gynaecology Unit and I woke up with excruciating abdominal pain. I was in proper agony. The reaction I received from the staff nurse was one of indifference. I think this experience has conditioned me to be an infrequent buzzer.

Thirdly there is the uncertainty of who will answer your call. It might be a student nurse, it might be an HCA, it might be a Staff Nurse, it might be Sister. Some of the problems and complications my cancer causes are really embarrassing and the thought of having to repeat yourself as you go up the chain of command is horrid, in my mind anyway. I would much rather venture out to find the correct person who can sort out whatever the issue is.

Fourthly is my professional understanding of how busy nursing staff are. Even when I am in a side room I will usually have an awareness of what is happening on a ward. Perhaps there is a very sick patient or there are numerous admissions, which I will prioritise in my own mind as more important that me.

So my reluctance to press the big round orange button and ask for help gets me into a pickle sometimes. I have laid in a hospital bed crying in pain many times during the night because I don’t want to ask for help. I have also left other serious symptoms too long before telling anyone. I think sometimes I am just a bad patient. We all know doctors make the worst patients but sometimes I wonder if ‘lay’ patients share my feelings about the big orange button…

Dear Chemo

Dear Chemo,

I thought I’d commit some of my thoughts about you to paper. I’ll warn you that this may make for uncomfortable reading at times and I may seem a little harsh.

There is no doubt that just under two years ago when we first encountered each other you managed to save my life. I completely get that and am deeply grateful to the doctors and nurses who helped to prescribe you and infuse you into my damaged body that was teetering on the edge of remaining alive. I had always been a little stand offish about entering into a relationship with you though. I had seen what you could do to my own patients back when I toyed with the idea of becoming a Haematologist.

The first time we came together I will never forget the nausea and vomiting you caused. It was horrendous. I didn’t eat for days and couldn’t even swallow my tablets or sip on water. You also gave me the most horrible colicky abdominal pain that I think if someone had handed me a gun I would have pulled the trigger.

You soon got bored with reeking havoc on my gastrointestinal tract and instead got to work on destroying my bone marrow. This induced the most severe apathy in me. I could barely stand up at times. Then the fevers and rigors started as my immune system came under your control. This meant I was once again incarcerated in the hospital and isolated from the world in my mutilated state. There were days and days of waiting and praying for my bone marrow to overcome the struggle with you and start to function normally again.

Then you cast your spell over my hair follicles; out fell my lovely dark, glossy hair in clumps. I remember being unable to cope with it any longer and asking the nurses to shave it all off for me. Just another mutilation taking away another little essence of Kate.

And so this went on. We learnt to counteract some of the nastier side of your personality but after five rounds in the boxing ring I surrendered and walked away from our relationship. You had left me battered and bruised but had also definitely beaten up my cancer enough for me to escape death for at least a little while.

I’m sure you felt jealous and scorned that I walked away so you left a few little reminders of our relationship on my body; the permanent numbness and tingling of my fingertips that reduced my dexterity; the subtle effects on my cognition that stopped me from being able to juggle several tasks at once; the long term immunosuppression leaving me susceptible to every virus around.

So we met again just a few weeks ago; like lovers who had argued but come together again desperately trying to forgive one another for their indiscretions. With the passage of time I had forgotten much of the less appealing side of your personality. Sadly you haven’t changed though. You still like to make me vomit. You still stop my bone marrow working leaving me hospitalised with infection yet again. You still took my hair leaving my self confidence at rock bottom.

The thing is you and I both know that you will never cure me. You can try and hold the cancer at bay for a little while but that overall fight is not one you’re going to win. So do we stay in this poisonous relationship for as long as we can both tolerate it or do we go our separate ways? It’s a near impossible choice that I’m going to have to ponder some more before I make it. In the meantime I’m afraid you will have to wait.

Kind regards,

K

Dear Cancer Part 2

To mark my two year cancerversary in July this year I wrote a letter to my cancer reflecting on what it was like to live together and thinking about the future. As my cancer has recently decided to progress I thought I would put pen to paper again…

 

Dear Cancer,

So you decided to wake up from your long sleep then. I wonder what you’ve been dreaming about all those months. Did I give you a nudge? Was it the episode of infection after my stent exchange operation? Did all those cytokines flying around my body jolt you awake? Or have you been waking up more insidiously over a few months, really quietly so that I didn’t notice at first and then bang, did you think it would be fun to give me a very hard tap on the shoulder, just to make sure I knew you were back?

Whatever it was that woke you up I do know about it now. The pain you are causing is horrible and I am not impressed. You are forcing my hand to have to resort to stronger and stronger analgesia, just to quieten your effects on my damaged body. When I sat in the Registrar’s Office at work and looked at the scan pictures my heart sank. There you were. Bold as brass. All over my abdomen. Filling my pelvis. Threatening to obstruct my large bowel. Sneakily hiding behind my left clavicle.

So here’s the thing. I’m not quite ready to let you take my life yet. I have a few more things I’d like to achieve. I want to look after a few more patients of my own. I want to finish my third book. There are so many people out there I would love to meet in real life. So I’m afraid I’m going to have to poison you again in the hope that we can shrink you a bit and send you back off to sleep. You are nothing without me, as when I die so do you, so please be obedient and let the drugs do their work on you. I know the time will come when you get your own way, but I’m not going to let that happen just yet.

Kind regards,

K x

#hellomynameis

I was recently a hospital in-patient with post-operative sepsis following a stent exchange procedure. During this admission I made some observations on the quality of my care. Perhaps the starkest of these was that not every member of staff who approached me introduced themselves. We have it drilled into us on day 1 of Clinical Medicine learning that starting the relationship with a patient begins with an introduction. It was easy marks in our exams. I’m sure it is the same for nursing and other healthcare professionals too. But something has failed…

As a healthcare professional you know so much about your patient. You know their name, their personal details, their health conditions, who they live with and much more. What do we as patients know about our healthcare professionals? The answer is often absolutely nothing, sometimes it seems not even their names. The balance of power is very one-sided in favour of the healthcare professional.

I have always been a strong believer in getting to know people’s names as part of building good working relationships with both patients and other colleagues. I think it is the first rung on the ladder to providing compassionate care and often getting the simple things right, means the more complex things will follow more easily and naturally.

So here the idea of #hellomynameis is born. If you support this idea please leave a comment below with your introduction to a patient. By doing this you are pledging to introduce yourself to every patient you meet. Please share this page with as many healthcare professionals as possible and let’s make things better… The NHS employs 1.7 million people. The majority of these people will interact with patients on some level. Let’s see how many pledges we can get!

Here is mine to get us started:

“Hello. My name is Dr Kate Granger. I’m one of the senior doctors who will be looking after you on the ward while you’re with us. How are you feeling today?”