Tis the Season for giving and jollity and all things festive, is it not? I have to confess that I have found it a bit tricky to enter into the spirit this year. My personal festivities have taken a few hits in the recent past: family crisis one year, horrific accident another and then two years ago my Dad died on the 20th December. Nothing like that to make the whole thing a bit dodgy. However, Christmas for me is more than a time of family togetherness and sharing. It is a spiritual festival of deep personal significance. And this faith was something my Dad shared. So, as we embarked on Advent two years ago, knowing that it would be his last, we waited. We waited for the coming of God as a tiny baby; we waited for Emanuel, for God was with us; we waited for the fulfilment of Dad’s faith, for the moment he could hear ‘Well done, good and faithful servant’ (Matt 25 vs 23). Did this make it easier to say goodbye to him? Or to miss him any less? I do not know for I did not experience it any other way. It was intensely painful. I missed him then. I miss him still.
What I do know is that joint faith has made me determined not to miss out on the joy of Christmas. So I have worked on forging new traditions, creating new memories, savouring new experiences. But like I said, this year took another hit. I mentioned earlier that I had been referred for an MRI and a bone scan. All on account of a bit of back ache and bone pain. The reality of this is that I was being investigated for secondary breast cancer. The appointment for getting my results was today. One day after the anniversary of my Dad’s death and four days before Christmas. It would be lie to say this did not worry me. Rationally I knew the odds were in my favour. But the odds were in my favour last time.
But I can officially declare that joy can be unconfined! Christmas bells can be rung! Champagne may be uncorked! Today I received my results and my bone scan says: ‘no evidence of osteoblastic bone metastases’ and my MRI says: ‘no evidence of bony metastatic disease’. It is, quite simply, the best Christmas present I could have wished for. And definitely one for my Jar of Joy!
I feel I owe you an apology. This year I have not been firing on all cylinders. I have been distracted. I have dropped more than a few balls. Plates have not been kept spinning. My eye has not been on the game.
Normally I am quite good at holding things together. I just did not realise how good. I stop taking notice of you for a few short months, tied up as I was with cancer, and Brexit happens. This was rude and unnecessary. How to kick a woman when she’s down. But that was not enough. Oh no. You planned a very special birthday treat for me. Donald Trump as US president. Seriously? You thought this would be a good way to get back at me for ignoring you? As attention seeking behaviours go, this is a full scale toddler meltdown of nuclear proportions. And I am less than impressed.
I fear ignoring such behaviour is not the way to go but I am at a loss to know how to rectify things. My Wonder Woman pants may not suffice. Like many I am fearful of the future, disillusioned for my gender and saddened by the hatred. For the second time this year my first word on waking was a shocked ‘No!’ But I do not want to live in fear, World. So, I repeat the words a friend shared on Facebook:
and I choose to live lighting candles at midnight, begging to differ wherever I encounter darkness. Join me and let’s live as people of light.
Today has been all about being thankful. Officially, it has been the Thanksgiving service of our beautiful granddaughter. Unofficially, it has been about much more than that.
When breast cancer decided to come crashing into our lives, my daughter and son-in-law thoughtfully decided they would wait until after my initial surgery and my chemo was completed before arranging their daughter’s Thanksgiving service. It is a big deal for them and something I am touched beyond words that they chose to delay until I was fitter than I would otherwise have been. As such, it has become something to look forward to, a bright, shiny event on the horizon that I have aimed for, knowing that its arrival meant I was on the road to recovery.
Having a day of celebration with my family, both close and extended, around me has been perfect. I have been so grateful for their support throughout the past months and for their fabulous food today. When caterers were proving to be a problem, they stepped in and it was sorted with great aplomb. To spend the day with them, with my granddaughter as the centre of attention, has meant the world. She has been an utter bundle of delight and joy.
And I am so very thankful. Thankful for my granddaughter; thankful for my family; thankful for their presence; thankful for their support; and thankful to my God.
As a final blessing for my granddaughter, I can do no better than the priestly blessing from Numbers 6:
24 “‘“The Lord bless you and keep you; 25 the Lord make his face shine on you and be gracious to you; 26 the Lord turn his face toward you and give you peace.”’
I have a bird feeding station. It is one of those pole affairs with bits hanging off it. My first born bought me what became the start of it and gradually it evolved. What am I saying? There was nothing gradual about it. I do not do gradual. I am impetuous and given to whims and fancies. So of course, on receipt of first item, I rushed out and bought a pole, other hanging bits and vast quantities of seeds, fat balls and other delicacies (mealworms, anyone?).
True to my whimmy ways, pretty soon the filling of the containers fell to the Captain. It is not that I am bored of the birds. I love the birds. I just forget that in order to feed them, the containers need to contain food. That is rather the point. I would claim chemo brain for this oversight but we all know that it has ever been thus. The food I bulk bought eighteen months ago, had finally run out so today marked the day that I ventured forth to buy more.
It was an exciting adventure. But then we have long established that I do not get out much. Today is always the day that I begin to feel human again. It is a week since the poisoning and my body is beginning to recover. Hurrah! Celebrating with a trip to B&M may not be everyone’s idea of a good time but there we have it. My octogenarian mother slung the 10kg sack of bird feed around as if it weighed nothing while I trailed behind with the 400g tub of mealworms. I also picked up a keyboard for my iPad making this whole dead laptop scenario slightly more bearable in the short term.
Feeding the birds is something I find wholesome and nurturing. Perhaps I have Mr Disney to thank for that. But I have been sore in need of comfort these past few days. I have had bad news of the cancer variety regarding both relatives and friends and it has felt grey and dismal all around. FEC is notorious for messing with one’s head so the chemical blues will not be helping. But I have found myself seriously despairing. Birds are motiefs I frequently return to. I have joked about blue tits and robin redbreast here on more than one occasion. My Mum used to call me her little sparrow. One of my nicknames in time gone by was Big Bird (it will be my yellow feathers). So it is perhaps not surprising that the bible verses that speak of birds resonate with me too. Matthew 6:26 speaks of ‘the birds of the air’ that my ‘Heavenly Father feeds’ and says that I am ‘far more valuable to him they are.’ And according to Psalm 84 ‘Even the sparrow has found a home … a place near your altar’. These all speak of love and care and nurture so it is no wonder that I find feeding the birds synonymous with God. It is as well that God is less given to whims than me.
I know that my friends and relative are held by God’s hand. I believe that they will soon ‘dwell in [his] house’ and be ‘ever praising’ him. But I am so sad that this vile disease will be taking them from me.
Remember this episode? Or the one where we bought and then the Captain made stilts for my invalid chair? Well today has an eery feeling of déjà vu about it. On the whole, I would say that I have been living on borrowed time. What with all the lounging around, lack of exercise and general poorliness. Tsk.
Having spent the morning in bed (bad), I got up, ran a bath, sorted out stuff to wear and then committed the most heinous of crimes. I removed my glasses and placed them on my bedside table. And that was it. Pain exploded. Breath forced from lungs. Muscle spasms slammed sideways. Oh goody. A kaleidoscope of memory synapses firing all over my brain as my experience of the 6th February came flooding back to me. The good news is that I appear to be able to learn from my previous experiences. My previous policy of ignoring it and hoping for the best proved to be a bad one. So this time, following the inevitable call to the chemo hotline, I dosed myself up on diazepam and diclofenac, put the vein heat pad to another use, dusted off the invalid chair, and dug out the exercise sheet. Physio Extraodinaire is also on the case and her advice, as ever, is invaluable. The Captain is in the shed constructing stilts for the new kitchen sofa. Whatever would I do without these people? Cry, even more, I think.
It is fair to say that I am more than a little pissed off by this latest twist in the tale. Is it not enough that I have chemo to contend with? Apparently not. Yesterday was a bad day for me. I was pretty miserable on the whole. Having cracked the halfway barrier and moved onto the two thirds club instead of feeling elated, I have felt overwhelmed by what is still left to tackle. Each cycle gets harder and the knowledge of what is coming drags me down. I have still be reading through Psalms. Lately I have found myself in a group of great praise Psalms which are, of course, well, great. But they have not been hitting the spot for me. Instead, I am finding much comfort in the unrelentingly miserable Psalm 88. Here’s a taste:
13 But I cry to you for help, Lord; in the morning my prayer comes before you. 14 Why, Lord, do you reject me and hide your face from me?
I love that this is included in the bible as it shows I am not alone. Because there are times when this is how I feel. It is a facedown flat on the floor moment before God. Even in the psalmist’s despair it is God to whom he speaks. I may not see God. I may not feel him. But I believe he is there. And therein lies my hope.
… Woah, livin’ on a prayer’. Thank you Bon Jovi. Truer words were never spoken. Well, not the bit about Tommy and Gina. Actually, just the chorus. Not exactly my belovéd Teresa or Julian but ‘t’will suffice
I am on something of tight schedule as any minute now I shall be poleaxed by the chemicals coursing through my veins. But just now I feel a tiny little bit jubilant. Halfway through feels significant. It was not all plain sailing today though. I nearly disgraced myself. Tears spilled and there was a danger that I would lose total control. It is weird the things that tip one over the edge. My cannula was painful. Not painful as in needing analgesia. Or needing re-siting. Just a bit sore. But that was enough. It makes me realise how tenuous my grip on control is. I did manage to rally. I know it is perfectly acceptable to fall apart. However today was not a day I wanted to. My chemo chair was in the most public position, directly in front of the main doors, and with those waiting for spaces sitting only a couple of feet from me. All very on show. I could not have even drawn the curtains around my ‘space’ without sweeping in three extra waiters. This may not have been a good idea. I did not try it. Perhaps next time I should? There may be some who would enjoy a private showing of Blubbing: How to Cry – a short sketch including leaking facial orifices. Mercifully it was all short-lived. Possibly thanks to the other song echoing round my head: Boogie Wonderland. No. I have no idea why either. But it is impossible to be downhearted for long while this is playing in your head.
Once the Epirubicin ran through my pump, I started to get palpitations. Not drastically but not altogether pleasant nonetheless. My nurse was not unduly concerned as my blood pressure was fine. They kept me an extra 45mins to be on the safe side but by then all had settled down. Bit weird though.
So now I am back home, eating delicious home cooked biscuits from a darling friend, drinking pints of rooibos tea and about to crack on with the Ally McBeal box set my sister lent me. Over and out.
Everyone loves a competition, right? Especially if you do not have to do anything other than be nominated. Even more especially if you go on to be one of the winners. Oh yes indeedy. I am a winner! Thanks to the lovely people at Cheerfully Given and one of my fabulous Facebook friends. All I had to do was look winsome (or was it sassy?) with my bald pate and loud lippy in an attempt to perfect the I-may-be-having-chemo-but-really-I-look-fine look. And I am thrilled to the tips of my red painted tippy toes.
The competition slash give-away was organised on Cheerfully Given’s Facebook page. Every month they run Cheer a Chum and ask for nominations ‘to bless some of your dear chums with a thoughtful gift‘. I had a choice of three gifts to choose from but, despite my metal allergies, opted for the above Victor’s Crown made by the very talented (and as it turns out, local!) Bloom Jewellery. It is a black leather cord bracelet with a tiny sterling silver crown threaded onto it. Inspired by Isaiah 35:10, it comes with the bible verse printed out reading:
The people the Lord has rescued will come back singing as they enter Zion. Happiness will be a crown they will always wear. They will shout because all sorrows and worries will be gone far away.
I love this. I do not believe it is a promise that the Lord, or King Jesus (see what I did there? Another crown reference), will rescue me, or any of us, in a manner of our choosing. I do not see it necessarily as a promise of healing. I see it as a promise that ultimately, in the words of the lovely Julian, ‘All shall be well’. Or in the words of the equally lovely Teresa, ‘God alone suffices’. Whether Zion of the bible verse is here on earth or with King Jesus in Heaven, I do not know. Either way, Happiness is a crown I shall choose to wear daily. And my beautiful bracelet will be the perfect reminder of that. Instead of wearing it, I shall dangle it from my bedroom mirror where I will see it on rising.
Enter my present trouble, O God of strength & compassion. Protect me from despair and faint heartedness. Encourage me with hope. Make me strong in Christ , ‘the one at your right hand’ (80:17). Amen.
Eugene H. Peterson Praying with the Psalms
I think it is fairly clear I do not generally have trouble when it comes to words, either written or spoken. Except, possibly, using too many (my personal word mantra? Why use one when one can get away with ten?). But whenever life has been tough, I have found it difficult to pray. As a Christian, this is something that bothers me. Or it did. I gave up with being bothered some years back. I now believe this is the very time that others hold us up and that is why we are called to be part of a community. I am so grateful for the prayers of others which have been prolific and are ongoing. People I barely know and communities I have never been to are praying for me continually. And this is something that is available for all. Did you know, for example, that most (if not all?) cathedrals have prayer boxes where you can fill out a slip of paper and your request will be included the next time the prayers are said?
For now, while it is so hard to form my own words, I am finding great comfort in liturgy. This is an often overlooked part of my Christian culture though my church heritage is rich with it. I have frequently quoted Julian of Norwich on here, or Teresa d’Avila or even Psalms. Reading the words of others has allowed me a voice when my own can get no further than ‘O God!’ The prayer I opened with is one I read last night, when not only my personal circumstances were pressing down on me but I was feeling crushed by the death of Jo Cox MP. I did not know Ms Cox, but I am horrified that my country, the country that so proudly showed the world our inclusivity and diversity during the 2012 Olympic Games, seems to have descended to such hatred and bigotry. So I find myself once more turning to the words of others:
LIGHTEN our darkness, we beseech thee, O Lord; and by thy great mercy defend us from all perils and dangers of this night; for the love of thy only Son, our Saviour, Jesus Christ. Amen.
I think I am prepared. In a How Do You Prepare For The Unknown sort of way. My levels of whelm are in balance: I am neither overwhelmed nor underwhelmed. So therefore I must be in a state of whelm. No promises for a total absence of anxiety tomorrow but right now I feel calm. Peaceful even. This is good.
I have packed a large handbag to take with me for entertainment purposes. It contains: sweets to suck in case of instantly yacky tasting mouth; 1.5 litres of water, half infused (basil, cucumber & lemon since you asked) and half plain; selection of non-tea tea bags, green, mint, ginger; crossword book; earbuds for iPhone (just updated listening matter); lip balm, gin & tonic flavoured, obviously; book; tissues. I am sure there are things I have forgotten. But as luck would have it, I will get five more goes at packing the perfect chemo bag.
Tomorrow morning, then, me, the Captain, and my bag will tootle our merry way over to the Chemo Unit for 9:30am. This means I will have to set an alarm. I am bad at sleeping. In general that is, but perhaps unsurprisingly particularly at the moment I am bad at sleeping. And the best sleep I get is invariably the early morning. Now that we are actually here, I do not feel especially anxious while awake. If one of you could just let my subconscious know that, I would be grateful. Perhaps it is time to dwell once more on Teresa d’Avila:
‘Let nothing disturb you; nothing dismay you;
all things are passing; God never changes.
Patient endurance attains all that it strives for;
Since the Lopping and Trimming took place I have had to adjust my wardrobe slightly. I knew that I would need to acquire a few Button Through garments and had a splendid time with Chummy purchasing some appropriate items during our Up Yours Cancer Lunch. These have been tremendously successful and I have added to the Button Through options with Step Into and Pull Up items which have also worked. Of course, while all this is marvellous for my limited arm mobility and the thin layers are great for the hot flushes, none of it is particular good camouflage for the uneven nature of my one and a half bosoms. And so I have become Scarf Woman. Sadly unable to leap buildings in a single bound I do not seem to have acquired any super powers but a scarf does distract admirably. And so I am embracing them.
I have even joked with several of you that Scarf Woman is my new Superhero status. Unfortunately, this is not true. Anxiety Girl really is more like it. You see, Thursday’s appointment is looming large. It is getting increasingly difficult to pretend that it is not happening. Thursday is the day the results from my surgery will be shared with me. Knowing that there are no cancer cells in my lymph nodes is massive and not to be underestimated. But that does not mean I am totally in the clear. On Thursday I find out what the rest of this year holds. It is hard not to be anxious about it.
And so I find myself back in Psalms. Actually I have never really left them. This time it is Psalm 25 as sung by Graham Kendrick and Matt Redman.