Faith Hope, Cakes and Candles

Good morning God,
It's always tempting to try to write about something that you are interested in or a part of. The temptation to compare your facts with other people's fiction overcomes the natural (and usually very necessary) fear of looking like an idiot (so what's new!)  and when its about hospitables - it seems it's almost irresistible.
It is possible to separate the dross from the gloss when writing about the Royal Marsden without exageration or manipulation in any way shape or form, put simply - no doss - just pure gloss. Bright, sunshining colours are present as pens, watch straps, hair bands -  wherever possible and enable people to remember that in spite of the inevitable maintenance works at the front, back, sides and lifts - there is a Monet or Renoir beauty also hiding back there somewhere, well thumbed magazines are left nonchalantly lying around along with a loyalty card for the coffee bar (as just one more hint of the optimisim that permeates the whole place)

Yes - I DO know what I am am talking about - this is my fourth week (I think) not counting the two or three days home for good behaviour towards the start of the month - and no - I am in no delusions about my disease or how vile, disfiguring and unpleasant it really can be. But I would want to echo everything good that was said about the Marsden in the guardian this week - and add some!

You see, they mentioned the patients, the brilliant but peculiar form of altruism practicesed by them, they pointed out how special and unique it is to have this facility on site - but they failed to mention some of the most incredible people I have ever met.
As a Methodist Minister, I get used to meeting saints (no really!!) But the staff of the Royal Marsden just astound me. They see ME - not the disease. They took the trouble to learn how to make me smile, how I like my tea and just how much ice makes a build-up milk shake actually taste like a mik shake.
This last fortnight I celebrated both my birthday and my 25th Wedding anniversary in the Oak Ward at the hospital trying out new treatments - so far no go..
For my birthday -there was cake, a candle and a song - for my Anniversary, one of the staff found a way of obtaining an anniversary card for me to be able to surprise my husband with, a doctor found a way of giving new signs of hope and two nurses were a step ahead of me in figuring out how we could enable me to sleep in spite of all the gadgetry sewn into my back.

I find myself wanting to ask not just for £2.00 a month - I want £2.00 + 2 smiles, or 2 acts of random human kindness as I am  convinced beyond measure that the cure for Cancer lies as much in the attitude of the people who work here and the care that they show as it does in the chemicals they research and administer.  These chemicals are incredibly expensive and although progress is fairly rapid, it does take time to solve the mutations that warp our cells. We have however known what warps our hearts and lives for a long time already.
Me? I'm going to try and take a leaf out of thier book - from the way I am greeted at the door, to the way I am wished goodnight, I will try and be worth the investment of the staff in me.

“End of Days”

Almost always with cats, the end
comes creeping over the two of you—
she stops eating, his back legs
no longer support him, she leans
to your hand and purrs but cannot
rise—sometimes a whimper of pain
although they are stoic. They see
death clearly though hooded eyes.

Then there is the long weepy
trip to the vet, the carrier no
longer necessary, the last time
in your lap. The injection is quick.
Simply they stop breathing
in your arms. You bring them
home to bury in the flower garden,
planting a bush over a deep grave.

held in a lover's arms

That is how I would like to cease,
held in a lover’s arms and quickly
fading to black like an old-fashioned
movie embrace. I hate the white
silent scream of hospitals, the whine
of pain like air-conditioning’s hum.
I want to click the off switch.

And if I can no longer choose

I want someone who loves me
there, not a doctor with forty patients
and his morality to keep me sort
of, kind of alive or sort of undead.
Why are we more rational and kinder
to our pets than to ourselves or our
parents? Death is not the worst
thing; denying it can be.

“End of Days” by Marge Piercy,
from The Hunger Moon: New and Selected Poems, 1980 – 2010. © Alfred A. Knopf, 2011.

When not believing is more important than believing

There are times with cancer when the world of belief stands on its head - when it becomes more important for some people to not believe, than it is to believe.
Belief is such a powerful force, it can move mountains - and some say, destroy cancer.
So when you begin to suspect that the cancer is returning, when the breath comes harder and the pain is more noticeable, you desperately don't want to believe what you fear.
And those who love you, urge you to not believe it. For they fear that the more you believe the cancer has returned, the more likely it is to do so...
Belief is, after all, such a powerful thing.

'You don't have to believe it's the cancer, it could be a million and one other things'.
This I am told, and this I understand
What we disbelieve can form us just as much as what we believe can.

But belief is not a magic wand to deny truth with. The one thing that I find is necessary, to live with, rather than suffer all this - is truth.
My body needs me to be aware of it in order to care for it. I cannot 'not believe' in what it is telling me.

I'm finding the isolation that comes with this particular stage in cancer quite profound.
After such an obvious time of remission, it is impossible to speak without betraying the belief of someone I love, that the cancer is still stable, and so it is impossible to share the pain I am in, and find comfort unless I am prepared to cause pain first.


I need my life to be like that of everyone else - a matter of fact - not belief.
It should not matter what I believe about the cancer - it either is, or is not stable.
The scans will tell us.
Meanwhile, surely what does matter is whether I believe in life,  not death, in hope  not despair, in joy not sorrow?

I believe in me - a child of God - who happens to have cancer.
I don't believe the cancer part is the most important part about me!

Scanxiety

Today was results day when I was told the results of the last CT scan.
I have learned not to underestimate the scanxiety I feel on such days, my whole life seems to hang in the balance, dependent on what the radiologist has been able to determine by comparing one scan to another.
Today was particularly bad. The Hand Foot syndrome that I have been suffering from has been so severe that six weeks ago the oncologist decided to lower the dose of capecitabine that I have been taking. Sadly this has done little to minimise either the syndrome or the damage and pain it causes. I was about to learn whether or not the reduction in the drug had affected the efficacy of the treatment.
Had the cancer continued to shrink on this lower dose?
Was the treatment worth the pain and suffering caused by the side-effects?
I needed to know, but was a little scared of what the scan might reveal.
I dreaded being told that it showed disease progression.
Thank God the results were positive and the scan showed a further shrinkage of the cancer.
Just 3mm, but that's 3mm less cancer clogging up and blocking my airway!
Moreover, I have now had three scans in a row where the cancer has shrunk!
It has never shrunk by a great amount, but just enough to provide a steady and consistent improvement in my condition.


The extent to which I had been suffering from scanxiety was evident in the fact that the dominant emotion I felt on receiving the news was relief - not joy.  If I'm honest, it felt as though I had been given a small but very significant reminder of the real value of hope as a counter to despair. I am sure that joy will come later as the realization dawns on me that I really have been making slow but steady progress for the last three months on this treatment.

For now, I am content to know that God's gift to me this Christmas is small, but profound:

3mm = hope for the future, and a life worth living in the present.

Trial and error

Being on a drug trial for cancer treatment is a mixed blessing. On the one hand, you are receiving the very best care that can be provided - in order that the doctors can gather the necessary information. On the other hand, nobody really knows what to expect.
I have been on the CAPITAL trial for almost 12 weeks now. The trial combines two well known cancer drugs - Tarceva and Xeloda - in smaller doses than if they were taken independently. This should minimize the side effects of both drugs without losing their potency - at least - that's the theory.
The first scans showed very positive results, the cancer had shrunk and my disease is classified as 'stable'.

Initially, apart from the most common side effects of an acne-form rash and diarrhea there was little to get excited about. That has steadily changed over the last six weeks.
The most painful side effect is hand-foot Syndrome or, to give it its proper name-  Palmar-Plantar Erythrodysesthesia.  This is caused by small amounts of chemotherapy leaking out of the capillaries in my  hands and feet. Once out of the blood vessels, the chemotherapy damages the surrounding tissues. They become very red and sore as the skin splits and infection sets in, in my case around the nail beds. Walking is becoming increasingly painful, as is typing as both my hands and my feet are affected.
Whilst not life-threatening - this particular side-effect is bordering on being life-limiting, and so evokes the questions that every cancer patient lives with subconsciously:

• At what point do we say that the chemotherapy is doing more harm than good?
• How much pain do we tolerate before saying it's just not worth it?
• What's more important, staying alive or living what is left of life well?

At the moment the questions lurk in the background of my mind. They are 'waking thoughts' which haunt the first few minutes of each day with the spectre of death, but which then disperse like mist leaving just a tinge of dread behind them. Don't misunderstand, it is not death that I dread, it's having to try and answer those questions.

Work and family mean those questions are more about relationships than about the sickness that leads to death. The answers are tied up in the love and support both given and received at such difficult times. The error is to dodge the questions, and take the easy way out - for each party to come up with their own answers based on presumptions rather than discussion.

Contrary to what people think - our lives are not our own. Our life is dependent on the relationships that make living more than drawing breath or fighting pain. Normally those relationships are balanced and defined by mutual respect. Each person knows their place, knows how to contribute to the life of the other without infringing on their personal 'rights'. In the case of serious, terminal sickness however, the boundaries that define the relationship shift and sometimes collapse under the strain of it all and the ability to discuss  what really matters is often the first casualty.

I have witnessed how the distress of fighting cancer, of watching and waiting for death,  can become so unbearable that families conspire to end a life by withdrawing all that really makes life worth living for the patient, the company of friends, the idle conversations, the chance to do some good.  Together, they long for 'it to all be over' - even though deep down they know that 'it' is really the life of someone they love.

I have seen the impact this has on the patient who doesn't want to inflict the pain of having to watch someone suffer on those that they love. They can see the strain on the family and are acutely aware of the financial consequences and emotional stress that their progress through the disease is having. 

And inevitably, in such cases, this has led to the questions being summarily dismissed as having 'obvious' answers - when clearly they don't. But everyone is reassured and excused by their conviction that it was cruel for the ending to be so long and drawn out, it was for the best in the end, the fight is over, the victory won...

In my case I know that I will not be able to answer those questions without considering the feelings and impact on my husband, my friends and, of course, the Churches that I serve. And they cannot make the decision for me without effectively killing me. Being a wife and a minister is who I am, not what I do. I can't imagine life without ministry so my ability to minister will have a major impact on how I might want to answer those questions when the time comes. It adds a whole new dimension to the concept of a 'work-life' balance!

The trial will continue as long as the drugs continue to work - or my body can no longer tolerate them. When that time comes, I pray God we somehow manage to avoid the error of either dodging the questions, or choosing the easy way out. 

All my tomorrows

In the beginning there was tomorrow.
Tomorrow was expected, anticipated, planned for and sometimes looked forward to, but most of all - just taken for granted.
A diagnosis of incurable cancer steals all the banality of tomorrow and can replace it with a grasping, begging, pleading importance. From being something that is not thought of, tomorrow becomes something that is desperately sought after and peculiarly, something that other people who previously never worried about all your tomorrows seem determined to know about.

I am asked - How long have you got? What's the prognosis?
Puzzled I reply, the same as it was before I had cancer...
My life has always been in God's hands.
It has never been measured by time, but by the quality of my relationships - with God and with others.
But this is apparently the wrong answer, an unsatisfactory answer. It doesn't provide people with something to look forward to, or grieve over.
I dont look as though I am dying.
But I am.
And so are you.
The only difference..?
Someone has told me that I have a disease which may well end my life. They can't say that it will cut my life short, because they dont know how long my life was supposed to be.  Neither can they tell me it will definitely kill me because they can't foretell the future. They can only say, if nothing else happens to end your life, this will - at some time, probably, in the not too distant future.
As vague as that seems, knowing that I dont know how many tomorrows I have, still robs me of the ignorance which is the foundation that most of us build our futures on.

Because I don't know how long I have to live, it seems wrong to consider applying for a new post..
It seems unethical to take out a loan. It seems irresponsible to not put my affairs in order.
It seems essential that I make my peace with my God.

But surely this should be true for everyone - not just for me.
We all know we are dying, and nobody knows how long they have to live. So why does knowing that I have cancer suddenly give people permission to believe that they now know something more about my life expectancy than they know about their own? There is no guaranteed life-span, humans are capable of dying from the moment they are conceived.  The simple honest truth is that humans are pre-programmed to die, it is the last great experience of mortal life.

Life and Death are gifts from God, and the knowledge of both are means of grace. Just because we dont like death, doesn't make it wrong or evil! It is not a mistake, a flaw, or a failure to die.
Death is NOT a sign of God's displeasure. Neither did it result from any human wrong doing. It is not a punishment for any real or imagined sin either now or in some distant mythical past.
Death is a part of God's gift of 'being' - whether we like it or not!
Life and death are inseparable - without life there is no death, but without death there is no life!

This is at the heart of the Good News.
Without incarnation there is no crucifixion, without crucifixion there is no resurrection.

The sad truth is that those who dont know they are dying, probably dont know that they are alive either.