gettingitoffmychest

40 The memorial service

After weeks of miserable weather the sun is blazing down.  We spill slowly out of the church onto the lawn in sad, quiet clumps.  Amazingly the rest of the world is heartlessly carrying on its business, bustling along the high street beyond the churchyard walls.

It's been a harrowing service.  We sat and sniffed or snivelled or sobbed through a series of hymns interspersed with moving speeches from both Friend's sons, her husband and her brother.  The boys showed remarkable composure, one reading a moving poem and the other reminding us how lucky they were not to have lost their mother seventeen years ago when she was given groundbreaking treatment by the Royal Marsdon.  Husband, faltering occasionally, talked about their life together and with his characteristic wit even managed to raise a few laughs.  When he'd finished I wanted to clap.  Why is applause in church such a no-no?

We talk to several friends.  We all hug and discuss Friend's humbling courage and determination.  We smile a bit about smudged mascara and for the first time ever I realise there are some advantages to having no eyelashes.  We then spot an acquaintance who had a bilateral mastectomy twelve years ago  and we chat for a while.  She not only looks stunning but positively radiates health and fitness.  We've got to know her because she's recently taken over the allotment next to ours.  It's her space apparently, jealously guarded, her husband being allowed up for heavy work only. Apparently she's up there all hours and works like a trojan.  Heavens - sudden thought - might Husband be lusting through the runner beans?

People are beginning to drift off back to their cars to go to the wake.  There's a marquee in the garden, caterers, food, wine.  There'll be a huge number of people.  And no hostess.  Having recently had chemo and feeling unable to cope with any more standing, especially in this heat, I get Husband to take me home before he goes on to Friend's house.  My head itches and I yank off Heidi with a sigh of relief.  As I put her away I reflect sadly on the inequalities of life's trade-offs.  I've gained a wig stand and lost a very dear friend.

39 A sad, sad day

Experienced Chem Friend has died.  She was only forty-nine.  What sort of age is that?  Her husband phoned mine an hour after she died.  How does one do that?

She was a truly amazing person.  She fought an extraordinarily courageous battle against cancer for very nearly eighteen years.  Her life was a relentless round of trips to the Royal Marsdon for surgery, chemo, radiotherapy and drugs.  Yet I never once heard her complain.  She was never self-pitying and never self-absorbed, though heaven knows she had reason enough.  She was always cheerful and, with a wonderful eye for the ridiculous, was always ready for a laugh.

She also had an incredible generosity of spirit.  On one occasion she rang to ask how I was getting on with chemo.  I replied that I was actually feeling a bit rough, but quickly added that I could hardly complain to her of all people.  Her immediate response was 'Yes you can.'  Inviting us round for supper the day we went public with my news was yet another example.  The laughter that evening boosted me in a way I wouldn't have believed possible.

It must be a crumb of comfort to her family that at least she lived long enough to see both her boys grow into two of the most lovely mature young men one could wish to meet - the older doing officer training in the navy and the younger starting the upper sixth as headboy.  All credit to her.  What a wonderful legacy.

It still hasn't really registered that she'll no longer be around.  It seems no time atall since we were cheerfully slapping on make-up at the Macmillan Centre, drinking coffee in one of our kitchens or sitting in a pub garden on a glorious day drinking a toast to 'Being Alive'.

When I started this blog I made myself two promises:  that I would be truthful (nothing made up, nothing exaggerated) and as upbeat as possible.  Up until now both have been easy.  Today I've broken the second one.  How could I have done otherwise?

38 A new medical discovery

There aren't many things I'll miss from this whole wretched business but my book chats with the phlebotomist will be one of them.  Having had so many repeat blood tests I've seen quite alot of her and we quickly established a mutual interest in reading.

I ask how her book club is going.  She's worried because at the next meeting it will be her turn to write up a report which she then has to present the following month.  She's particularly nervous because two of the most recent newcomers to the group are PhDs.  I confidently assert that PhDs don't necessarily make expert book reviewers, whilst simultaneously making a mental note never to go anywhere near her book club.  I immediately regret having raised her anxiety levels because she can't get a vein and has to have a second stab.

Armed with a newspaper I go up to the Macmillan Centre to kill time till I get the result of my blood test.  After half an hour I'm really struggling with a 'difficult' su doku.  I can usually manage 'difficults' without too much problem and am on the verge of giving up till I think of Experienced Chemo Friend who can knock off 'fiendish' and sometimes 'super fiendish' before she's even finished breakfast.  Though when the phone call summoning me to the chemo department comes through I do finally admit defeat.

As I enter the unit I can tell immediately from the nurse's face that it's bad news.  'I'm sorry' she says, 'your blood count's too low.  It's your neutrophils' she adds helpfully.  Having got myself all psyched up for my LAST chemo it's a bit of a blow.  It's those pesky under-performing neutrophils again...  To cheer myself up on my way home I formulate a new medical theory - that a good neutrophil count is essential for the full functioning of the reasoning and numerical area of the brain.  Somehow I have the feeling the medics won't buy it .  Pity.  I like it.

37 Butterflies or anchors?

My first trip to radiotherapy feels a bit scary.  Not as fearsome as chemo, but all the same...  I'm told to undress my top half and put on a skimpy gown which does up with precisely one tie, revealing everything upfront and personal.  The nurse apologises, saying they used to have plenty of 'breast' gowns, but since the laundry has been contracted out to another hospital (a smaller one) they never get the 'breast' gowns back.  I'm tempted to launch into a long diatribe about the follies of contracting out, but decide against it on the grounds that the nurse probably agrees and will have heard it all before.

Today is a 'simulation'.  The real thing starts in three weeks.  The doctor wants me to sign a consent form, having told me that I'll be marked with a felt tip which will wash off and two tiny tattoos that won't.  I'm suddenly rather excited at the prospect of joining the bright young things, the butterfly-on-the-bum brigade, and I sign on the dotted line.

Once up on the couch I'm subjected to what seem like alternating low and high tech happenings.  One minute it's all bright lights and the doctor measuring me up with what looks like a ruler and a pair of calipers and shouting out measurements to the two radiographers and the next minute the lights are dimmed, a thin green light appears on the machine above me and everyone goes next door.  This alternating sequence happens several times and somewhere amongst all this the doctor presumably tattoos me.  I feel nothing.

I'm reminded of one very memorable first baby visit from my health visiting days.  The mother was very middle class, sloaney even, all blonde hair scraped back with a velvet alice band and pearl stud earrings, but when she unbuttoned her top to breast feed she revealed a pair of heavily, totally (and I mean totally) tattooed breasts.  I'd never seen anything like it.  I cursed the midwife for not having warned me because it's not easy maintaining a normal conversation about the rollercoaster of emotions of early motherhood when your eyes are popping out like chapel hatpegs.  Acting skills are never mentioned in the job description.  They should be.  They're vital.

That night I tell Son and Daughter about my tattoos (so tiny I actually have trouble locating them)  Should I, I ask them jokingly, expand them eventually to butterflies?  Living near a large naval base finding a tattoo parlour should present no problem.  'Oh no Mum' scoffs Daughter.  'Far too common.  Go retro.  How about an anchor?  With 'I love mother' underneath?'  'I'll think about it' I tell her.

36 Catching up with gossip

I'm meeting Friend from work for lunch.  She's retiring next week but I can't make her leaving 'do' because I'll just have had chemo.  I'm looking forward to catching up with some juicy work gossip, but when I get there she's got a drink in her hand and a long face.  It turns out her cat (the most gorgeous, unusual, long haired ginger moggy that I've ever seen) has just had to be put down.

'What news from work?' I ask at last when I judge it's safe to move on.  She pulls a face.  'They're not going to replace all my hours.  We'll lose a whole day a week.'  Health visiting is all about prevention - post natal depression, child behavioural problems, child abuse - and how does one prove the effectiveness of prevention?  If something doesn't happen, who's to know it might have without intervention?  To the men in suits health visiting is unfathomable.  Midwives, district nurses and Macmillan nurses all DO things.  Delivering babies, giving injections and nursing terminally ill patients all tick boxes in a way that listening, talking, counselling and supporting don't.  We go on to have a good moan about management.  From there we embark on a systematic review of the entire NHS, reorganise it completely before the our lunch arrives and both feel considerably better.

'What gossip from work?' I try again. This time Friend tells me that one of the nurses who was off all last year with breast cancer is now back at work.  Not only is she back at work, but she's apparently looking positively radiant.  Yet she had a terrible time, reacting unusually severely to chemo.  After her fifth she collapsed and landed up in hospital on the high dependency unit.  It gives me a huge boost to know that someone who's been so ill can be back at work looking so good.  I'm reluctant though to look too upbeat because Friend is still looking morose.  Her brow is furrowed.  'How will I adjust to retirement?' she suddenly asks.  She's a bright cookie, talented and resourceful, with a wealth of hobbies and interests.  'You'll be fine' I reasssure her.  She looks unconvinced.  I think back to the cake she made me just after I'd had my op.  'If you really get stuck for something to do' I tell her 'you can always make me more coffee and walnut cakes.'

35 Chemo brain

Chemo seems to affect everyone differently.  One of the things I notice most is a heady, fuzzy, kind of spaced-out feeling - I think it was Kylie Minogue who coined the phrase, 'chemo brain'.  Driving any distance with chemo brain worries me, so when Friend offers to take me in for my echocardiogram I jump at it.  We get to the hospital early and stop at the coffee shop.  When the time comes I leave Friend with her coffee and a book.  'I'll be right here' she says.

Once in a cubicle in Cardiology I'm told to sit on a very upright couch on my left side with my arm raised up over my head.  Apparently this extraordinary position places the heart nearer the surface and opens up the ribcage.  I wriggle awkwardly.  'I can see you've never been an artist's model' jokes the radiographer.  She's right, though I feel my pose qualifies me for a Rubens painting at least - authentically so with my steroid induced weight gain.  Encouragingly, my heart sounds as though it's whooshing away alright.  The radiographer tries to point out various valves to me while I crane my neck back at the grainy pictures.  I'm unable to make out anything much, but try to sound intelligent.

On my way back I stop briefly at Bodyshop on the hospital concourse to buy something for Experienced Chemo Friend, who's none too well at the moment.  Back at the coffee shop I look down the far end, beyond the pillar, where I'd left Friend.  There's no sign of her.  Maybe she's pottering round the shops too and I missed her.  I settle down to wait the other side of the pillar, two tables away from our original one. 

After twenty minutes there's still no sign of her and I'm beginning to get anxious.  Images of her languishing in A and E, having collapsed in my absence, come to mind.  I leave the coffee shop to patrol the concourse and it's then that I suddenly spot her, tucked right in behind the pillar, alive and well and reading her book.  Having taken my seat when I left she'd been completely hidden from view.  So all that time we'd been sitting feet away from each other!  'There you are!'  I yelp, slightly resentfully.  She looks puzzled.  'I said I'd be here.'  'Not quite' I object.  'No.  But I did tell you I was swapping places' she persists, reasonably enough.  I remember now.  She did and I obviously hadn't taken it in. 

I blame chemo brain.  What'll be my excuse when I've finished chemo?  Radiotherapy brain?  Herceptin brain?  Arimidex brain?  Ah well, I won't worry for a while.  That little lot should keep me going for the next five years anyway.

 

34 All things green

I'm having a routine pre-chemo check.  I enter the unit to find the waiting room heaving and the receptionist looking harrassed.  'I'm sorry' she says, 'we're running an hour and a half late.  We've had over fifty patients this morning.'  I squint over the desk at her list and spot with a sinking heart that  I'm second to last.

Over one and a half hours later I'm called through to one of the examination rooms, where I settle down for yet another wait.  By now it's after 1.30.  I'm bound to be a five minute 'in out' job because the medics will be hungry and tired. I too am feeling tired and I find myself empathising with a very weary looking cactus on the window sill.  Actually 'weary' is generous.  It's sickly, practically terminal.  The earth in the pot is dry, shrunken and bare.  The only evidence of any life are four weedy tendrils dangling hopefully over the edge, as if in a desperate bid to escape.  The kindest thing would be to put it out of its misery and bin it there and then.  I'm sorely tempted, but of course I don't.  I sit there and do nothing.

To my surprise in sweeps the consultant.  (I'm usually seen by one of his minions)  He promptly berates me for still not having chopped down our acer.  I mumble something about Husband having to make the allotment his priority at this time of the year, but assure him we're 'on the case'.  He then spends a long time asking how I'm getting on with the chemo, checking my bloods since the fainting incident and going through my future regime.  He also gets me up on the couch, under the window with the dying cactus, and examines me thoroughly. 

He's washing his hands and I'm pulling my top on when I suddenly see an opportunity to get my own back.  I address him from behind. 'Honestly, you can't talk.  You get at me about our tree, but what about this thing here?'  He turns round, drying his hands and looks puzzled.  'What thing where?'  I nod in the direction of the plant.  He looks at the window sill as though he's never clapped eyes on the wretched plant before.  He frowns, then waves his hand in the air.  'Well' he says, 'what do you expect?  After all this is the NHS.'

33 A weekend away

We feel badly in need of a break and when my chemo is postponed due to another low blood count we plan a weekend away.  From the Good Pub Guide we pick at random a pub in Dorset, a county neither of us really knows.

We arrive in the pouring rain to find a delightfully atmospheric old pub nestling in the middle of a village to die for.  It gets better.  The restaurant is superb, the room lovely and the bed really comfortable.  If it weren't for the weather... Saturday the rain looks like it's set in for the day.  Resigned to staying in the car we meander through impossibly pretty chocolate box villages.  We poke around a couple of old churches and explore Tolpuddle of Tolpuddle Martyrs' fame.  I have to brush up on some very rusty history.  Having got it into my head that the martyrs were convicted by Judge Jefferies at the Bloody Assizes I'm amazed to discover the two incidents were separated by a mere matter of two centuries!

On the second day of rain we resign ourselves to the fact that if we're to see anything of Dorset properly we're just going to have to get well and truly soaked.  Which is what we do.  We traipse mud around Thomas Hardy's cottage, tramp along a sodden cliff top and squelch our way round a swannery.

On our last evening we're going down for dinner when I suddenly realise I'm not wearing Heidi.  Panic stricken, I tear back upstairs, praying that none of the doors along the corridor open.  Mercifully none does and I reach the sanctuary of our room where I can retrieve Heidi and my dignity.  Down in the bar I challenge Husband.  Hadn't he noticed I wasn't wearing my wig?  He claims he's got so used to seeing me without hair that he takes my baldness for granted.  Well I've got news for him.  I intend to grow my hair again.  And this time I'm putting in for great, thick, tousled tresses of the stuff.

32 An unwelcome night out

It's evening and we're getting ready for bed.  One minute I'm standing at the sink, the next I seem to be lying on the floor with Husband's anxious face swimming in and out of focus above me.  'You fainted and came round no less than three times' he says.  We're both a bit alarmed.  Nowhere in the chemo side -effects questionnaire is there any mention of fainting.  We ring the hospital and they tell me to come in to get my bloods checked.  I'm heartened to find their computer knows of me and can tell me I'm day 5, post-chemo 4. The different departments do talk to each other! 

I fling a few overnight things into a bag on the assumption that if I'm prepared I won't be kept in.  There's little traffic around at ten o'clock at night and we're soon on the ward.  One nurse does my obs, which all seem incredibly normal and another takes blood.  He puts a priority red blob on the lab form to speed things up.  I imagine the lab technicians crouched over wooden benches, crammed with microscopes, petri dishes and bunsen burners, beavering away all night in the bowels of the building.  What do I know?  They're probably perched on the top floor, surrounded by computers and state of the art technology, enjoying panoramic views,

We're then sent to the day room to wait for the results.  A TV drones in the corner.  A haggard looking man is crumpled in a chair.  Hardly have we sat down before he tells us his wife has pancreatic cancer and for the last three days has been expected to die any minute.  He and his daughter are maintaining a round the clock vigil.  He's angry with his son who refuses to join in on the grounds he can't cope.  At midnight the daughter arrives to relieve him.  She too is desperate to talk and we hear the whole story again.  She too is angry with her brother.  I drift off to sleep and when I wake Husband is still on listening duty.

After about an hour she goes to sit with her mother and we're left alone with the TV.  Listlessly we watch one of those bizarre, low budget, late night programmes about a national church bell ringing competition.  The team we're following are being very stoic, having just learnt that they haven't won, when the nurse comes in.  'You' she beams at me 'are going home.  Your bloods are fine.'  I'm instantly wide awake.  We've switched off the TV, turned out the lights and left the room in a matter of seconds.  Despite the wide screen TV, the comfy chairs, shelves of books and piles of jigsaws it's a sad, sad place. The walls drip with heartache and I fervently hope I never have to go there ever again.

Through the open door of a sideward we catch a glimpse of the daughter leaning over a cotside.  We whisper 'good night' as we pass.  Inadequate words, of course, but what can one say?  Negotiating the endless deserted corridors I'm desperate to get out of the place.  Even the brief delay when the automatic doors refuse to open becomes unbearable.  As we climb the steps through the trees up to the car park I breathe grateful gulps of fresh night air.  When we reach the car I fancy I can smell the pine trees we've parked under.  We've escaped.  We're free.  We're going home.

Apolgies to those of you who've commented on the posts these last three weeks or so and were wondering why they weren't published.  I'm afraid for some weird reason a load of e-mails were re-routed elsewhere on the internet.  Normal service has now been resumed!

31 Spare parts and sell by dates

A nursing friend that I trained with has now qualified in massage, stress counselling and anger management.  She and her husband are coming down for the day.  I open the door to find them carrying a suitcase and something enormous I can't identify.  To my delight the mystery package turns out to be a fold-up massage couch and the suitcase a set of towels!  We waste no time in setting up the couch and Friend proceeds to give me an hour long whole body massage.  It's wonderful, just wonderful.

The men make themselves scarce, ostensibly to view Husband's allotment, but no doubt to adjourn to the pub to discuss manly things like cars and cricket.  Friend's husband is a GP who retired on medical grounds with cancer.  He was on chemo every two weeks for two years and whenever I start feeling sorry for myself I think of him.  In the middle of treatment, with Friend adminstering the chemo, the intrepid pair took themselves off on holiday to Cuba!  Those were the days when you could happily trot round the world with a suitcase stuffed full of drugs and syringes and no-one raised an eyebrow.

Over supper we discuss our planned reunion - just the five of us who shared a flat together as student nurses.  It's going to have to be postponed, not just because of me, but the friend whose house we were going to meet at has a type of lymph cancer and is currently taking part in a trial of monoclonal antibodies (drugs that target only cancer cells, unlike chemo which affects healthy cells too)  If she doesn't respond she may have to have a bone marrow transplant, though so far a trawl of the worldwide data base hasn't yet come up with a perfect match.

With her plight in mind (and before I was diagnosed) I went to my GP to ask about becoming a bone marrow donor.  He gently explained my bone marrow was too old to be of use to anyone but me.  It's disconcerting to learn that bits of you are already past their sell by date.  Maybe it  served me right.  At the time I was being insufferably smug having been told, in the space of one week, that I had the blood pressure of a twenty year old by the practice nurse and that I had the dental roots of a twenty year old by my dentist.   I left the surgery, trying to tell myself that old age does have some advantages. I am now the proud owner of a free bus pass and a senior citizen's rail card.