Best Christmas Present. Ever.

vintage-christmas-card-gifts-cover

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!

Christmas may now begin.

Unexpected Joys

meds

Today I saw The Doc again.  This was a surprise.  I was not anticipating the pleasure of his company until October next year.  However, I have been having one or two issues … plain sailing was never going to be on the cards, was it?

Yesterday I rang the Breast Care Nurses as I wanted to check the procedure for changing the osteoporosis meds I am on.  Since taking them, I have been experiencing fairly constant indigestion and on one occasion, spent the day throwing up.  I am such a class act.  My GP is already on the case but I wanted to be certain that I would be referred to the same hospital.  In passing, I mentioned the pretty much constant back ache I have had since my diagnosis back in February when I slipped a couple of discs.

BC nurse: ‘I’m sorry?’

Me: ‘Erm, I’ve had backache since February …?’

BC nurse: ‘And you’ve not been scanned, have you?’

Me: ‘I had a DEXA scan.  But that’s not what you mean, is it?’

BC nurse: ‘No.  I think an appointment with The Doc would be wise.  Tomorrow?’

Me: ‘Wow.  Er, yes, fine.’

It is not exactly something you refuse, is it?  So today, I was back in clinic, sitting opposite the chemo unit, watching the time tick by, waiting once again.

As always, The Doc was lovely.  He has instructed my GP to refer me to the Osteoporosis clinic for six monthly injections (sub-cutaneous or IV, the jury seems to be out on that) and prescribed me variations on the vitamin D and calcium supplements I have to take.  I am being sent for an urgent MRI and bone scan.  Which means sometime in the next four weeks.  We will then reconvene to discuss the results.  He was alarmed by my backache which was disturbing.  ‘I’m 99% certain it’s my discs & osteoporosis,’ I said.  ‘Yes, yes,’ he mumbled in reply.

Neither of us mentioned the other possibility because no one wants to think about that.  So it sat there in the middle of the room, drawing attention to itself, like the embarrassing drunk at the party that no one wants to acknowledge.  Hopefully, by my next appointment, it will have sobered up and in the cold light of results, will have vanished like a distant hangover.

Two steps forward …

fine

I have had a busy couple of days.  That is itself is a good thing.  It pleases me.  What pleases me less is going to bed last night at 9pm, pretty much sleeping the clock around, waking this morning at 9am and feeling like I had not slept at all.  This I do not like.

I have done this recovery from chronic illness malarkey before and it is tedious.  In 2010 I had a serious accident.  I fell on our drive in the snow, crushing my face which resulted in multiple fractures.  I needed five operations to repair the damage and rebuild my face.  It took 2 1/2 years to recover.  I did not enjoy the recuperation then.  I am not enjoying it now.

However, my busy days were good.  On Friday I went to visit my MP to ask her to do what she could to campaign for secondary breast cancer.  She is going to chase up the CEOs at the two hospitals involved in my care as these trusts are not accurately collecting mandatory data needed to plan services for patients with secondary breast cancer.  I wrote to them over a month ago and have since chased up my letters to no avail.  She is also going to liaise with Jo Churchill MP who is a great advocate for breast cancer generally and recently questioned the Prime Minister on the subject.  You will see from that link that Teresa May’s answer demonstrated her lack of knowledge so I gave my MP a copy of this excellent piece that made front page of the HuffPost.  It beautifully explains why we need Government to understand the issues at hand.  It was a good meeting and I was impressed by her knowledge and enthusiasm.  Of course, time will tell if that translates into action but it was encouraging.  I left her with the prototype of the new fundraising jam I have been working on.  Introducing: Not Second Rate Jam

bcc-jam

This prototype was using Raspberry & Apple Jam but the real McCoy will be Raspberry & Rhubarb and will be available next year.  Details will follow.

Also on Friday I signed up to Slimming World.  I need to get my BMI down to recommended levels before my next surgery and I knew from friends that there was a very supportive group locally.  It is a little earlier than I intended to do something so formal but my second born has voiced an intention to do likewise so it is something we can do together.  It felt a positive step and I have enjoyed tackling cooking and food prep once again.

Yesterday, the Captain and I took a trip to visit my sister which was a delight.  Thanks to the Captain’s serious and very inconvenient cat allergy we have not been able to do this for some years.  But a recent accidental discovery meant it was worth another shot.  The whole thing can be declared a success.  So long as we kept to non-carpeted areas and kept it short it was possible.

These two days made me feel normal.  Today not so much.  But there is still fun to be had.  I am anticipating the visit of an old friend with great relish and my first born and family will shortly be arriving with fireworks.  Excellent.

National Secondary Breast Cancer Day

secondary-bc-13th

I did warn you all that I had become a bit militant a few days ago, didn’t I?  I have not exactly been chaining myself to railings or going on hunger strike but I have been doing stuff.  And that, I believe, is the official term.

Yesterday was National Secondary Breast Cancer Day.  I put together the above picture for my Facebook cover photo.  The pink ribbon with the black stripe is specifically for secondary breast cancer and sold by Breast Cancer Care here.  Alongside that I did some emailing.  I contacted my MP, the Prime Minister and the minister responsible for Cancer, David Mowat.  Writing to David Mowat is easy.  Breast Cancer Care have drawn up an email template that can be personalised if you choose.  But really, it could not be simpler.  Please consider contacting him here.  He has already tweeted his support for improving standards of care in secondary breast cancer.  But we really need him to honour his word.  It is especially concerning given that the Prime Minister appears to have no understanding of the condition as shown by this clip from PMQs on the 12th October.  Hence my email to the Prime Minister asking that she become better informed.  I then let my MP know of both these emails as our meeting for today had been postponed by her office until the 28th October.  So, busy busy.

Throughout October, what with it being Breast Cancer Awareness Month and all, I have been regularly changing my cover photo on Facebook and adding details about various aspects of breast cancer.  The rationale behind choosing my cover photo is that Facebook gives me no option but to have this set to public.  It is therefore possible for it to be shared widely without the need for tampering with my personal settings.  If you use Facebook, please feel free to check out my pictures and share them.  I want to educate as many people as possible about different sorts of breast cancer, so that they are more aware than I was at my point of diagnosis.  I want to urge people to check their breasts regularly, to use text alert services like CoppaFeel’s to remind them, to attend mammograms when they are due and to be alert to signs that something may not be right.  For this I have even tolerated a bit of pink in my choice of pictures.  I am not a fan of the pink obsession.  The day I received my diagnosis I was wearing a pink cardigan, sitting in a pink clinic and clutching pink literature feeling like I was already wearing the uniform of the ‘club’ I did not want to belong to.  I have not worn that cardigan since.  However, I will concede that the pink association with breast cancer is inextricably linked and from a fundraising point of view it provides instant recognition.  Therefore, I am doing my best to grit my teeth and get over myself.  Some day soon I will host a NOT pink fundraising event where those sporting pink will be fined – all in the name of Breast Cancer Care.

While on the subject of fundraising, I am working of a line of jam which will be sold to raise money for Breast Cancer Care’s Not Second Rate campaign.  It will, of course, be Not Second Rate Jam!  More of that another day.

Bone Suckers and Tight Spaces

lift

Today was my DEXA scan day.  Prior to starting on Letrozole, my hormone therapy, I need to have my bone density assessed.  Letrozole is one of group of drugs called Aromatase Inhibitors and these are known to suck the life out of bones causing Osteoporosis.  Why they are not simply called Bone Suckers is a mystery.  For every year I take these little blighters, I will lose between 1% and 3% of my bone density.  Consequently assessing the state of my bones before starting is somewhat important.

My appointment was at 9am which is always something of a challenge.  Rush hour traffic is never pleasant but allowing an hour for the thirty minute journey has previously been ample.  Not today.  Today the world was heading to the city.  I blame the Tories.  At least I did at first since their conference was the only reason I could give for the ludicrous levels of traffic.  Though personally I would have expected the traffic to be heading in the opposite direction … Once we arrived at the hospital it became clear that the world was also heading here.  I wondered if my MP had taken up my Twitter suggestion that she divert a few MPs to ask my hospital why they were not collecting and publishing the data they should be on Secondary Breast Cancer?  It seemed not.

By this time, we were so late the Captain dropped me off before he went in search of a parking space.  I shuffled off as fast as I was able to be greeted by out of order escalators giving me no option but to take the lift.  I missed the first one, was bundled into the second one with five other people which more than filled the tiny space.  The doors closed, we reached the first floor, the doors did not open.  I will repeat that: the doors.  Did.  Not.  Open.  Being stuck in a lift is not my idea of fun.  I was already breathless and shaky and this did nothing to help with that.  I ended up sitting on the floor.  My nightmare is being stuck in lift with an out of order emergency phone.  Perhaps I can put that one to bed now as the emergency phone did work.  The woman on the end of it was very reassuring.  Apparently maintenance men were coming to rescue us.  Being rescued would have been nice.  We did not meet any rescuers because after fifteen minutes the doors spontaneously opened and we bolted.  I say bolted: a lovely but tiny septuagenarian couple offered to haul me to my feet.  I politely declined.

After all that excitement my scan was thoroughly dull in comparison.  I lay on a metal bed and a space age scanner whirred, beeped and hovered over my nether regions.  They said it was looking at my spine and hips.  I will get the results next time I see The Doc.  Something else to look forward too.

Militancy Matters

ink-pot

It is official.  I am much improved.  The lack of 5FU in my last cocktail has definitely seem more spring in my step, more boing in my bounce, more spark in my  plugs.  I have been suspecting things were a bit better for a couple of days but today it sort of burst out of me.  You see, I came over all militant.  That in itself is not unusual.  But today I have taken action!  Number of MPs written to?  One.  Number of hospital Chief Execs?  Two.

I have been driven from soapboxing to taking action by the Secondary, Not Second Rate Campaign run by Breast Cancer Care.  They published a report in July having surveyed nearly 1000 people and having it read it, two things struck me today.  First, 58% of those like me, diagnosed with primary breast cancer, did not know what signs and symptoms could indicate Secondary Breast Cancer, 20% thought they did but were actually wrong and only 22% knew what to look for.  This is truly shocking.  But given that 60% of hospitals are not discussing this possibility with their Primary Breast Cancer patients it is not surprising.  But it is easily remedied.  A final conversation with the Breast Care Nurses at the end of treatment, with clear information and points of access laid out for further treatment, would be all that was required.

Of course, to plan for future treatments, it is necessary to know the scale of the problem and therein lies the real issue.  Since 2013 it has been mandatory for hospitals to record data on Secondary Breast Cancer.  They have to record the numbers diagnosed and whether they previously had Primary Breast Cancer or not.  But the vast majority of hospitals in England are not doing this.  Breast Cancer Care are now naming and shaming the hospitals they know of so do look up your local: https://www.breastcancercare.org.uk/secondary  (2/3rds of the way down the page).  This information is crucial.  After all, how can you plan for a service if you do not know how many users there will be?  How can you assess the efficacy of a treatment if you do not know how many go on to develop further problems?  Of course you can not.  What happens is that disaster ensues.  And that is how the state of Secondary Breast Cancer care is at the moment.  And it is unacceptable.  This report made me angry.  Very angry.  It made me sign up to volunteer for the Secondary Not Second Rate campaign.  It made me want to educate all I know on what signs of Secondary Breast Cancer to look out for.  It made me bang on to a lot of my friends about the injustice of the situation.

But what really tipped me over the edge, what really made me incandescent, was this little film.  Take a look and let’s see if the same statistic gets you:

We are about to hit Breast Cancer Awareness month.  Pink is going to consume us.  I hate the pinkification of breast cancer.  I have said it before.  I will no doubt say it again.  But I can almost (only almost) cope with its retinal burning luminosity by consoling myself with the thought that money will be raised.  Somewhat naively, I assumed that all breast cancers gets an equal share of this.  Didn’t you?  They do not.  The tsunami of pink that engulfs us is almost entirely taken up with money for primary breast cancer.  Less than 5% goes towards Secondary Breast Cancer.  Less than 5%.

It was this that kicked me into action.  I cannot standby and allow this situation to go unchallenged.