Summer Place

criannan

We have fabulous friends.  I love you all.  You have all been amazing.  You have all given of yourselves so much and for that we are incredibly grateful.

One set of aforementioned fabulous friends allowed us to share their beautiful summer home, Criannan, for a week just before half term.  Set in the foothills of the Cheviots, this cottage could not be anywhere more perfect in my opinion.  Northumberland is part of my upbringing.  I moved around a lot as a child and arrived with my family in Northumberland as a stroppy teenager believing that Hadrian had built the wall to keep penguins out.  Imagine my horror when I discovered we were living north of the wall!  However, it grew under my skin and burrowed deep into my heart.  The wide open skies, the wild beaches, the untamed weather and sheer vastness of nature feed my soul in a way no other place has ever come close.  I feel rooted here.  Grounded, body and soul.  To have the opportunity to return and heal here at this point in my life was very special indeed.

I spent my adolescence at the southern end so having in week in its northern reaches was lovely.  We drove along Roman roads, tripped over castles,

castles

skipped along beaches,

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gawped at sumptuous paintings in implausible places

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and supped our way through many a tea shop.  And each night we return to our cosy cottage, tucked away for the night in the warmth and comfort of our friends hospitality.

This magical place is available for rent at exceedingly good rates and I can thoroughly recommend a stay here.  Every last thing is thought from the welcome basket of local produce to the array of books, dvds and games or the well equipped kitchen with underfloor heating.  And the views!  Oh my, the views!  See the picture at the top for what we saw each day on waking.  What did I say?  Magic.  ‘Criannan’ means Summer Place in gaelic, but for us, it will always be our Autumn refuge.

For more information, see here: http://www.criannan.com

Breaking the Silence

hope-copy

You may have noticed the lack of posts recently.  It is not without reason.  I am really struggling with this stage in the proceedings.  I know.  Ridiculous, right?  I have finished chemo, I do not need radiotherapy, my prognosis is even good.  I mean just look at the above statistics.  There is every reason for optimism.  Every reason for hope.  And yet have I have been wading through feelings of misery.

I want my life back.  I am tired of looking and feeling like someone I do not recognise.

I am taking steps in that direction but it is going to be a slower process than I would like.  And patience has never been one of my virtues.

Breast Cancer Awareness Month

I defy any of you not to know that October is breast cancer awareness month.  The pinkification of this disease reaches endemic proportions and we are subject to an avalanche of pink in the early days of the month.  Until the Christmas decorations wipe it out that is.  Sigh.

I decided to have a go doing a bit on Facebook to raise awareness.  Rather than doing personal posts on my wall, I chose to change my cover photo at regular intervals because the privacy settings for this are already set to public which meant anyone who chose to could share the information without any need for settings to be changed.  The following are the pictures & information I shared:

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‘For October I am trying to find the least pink pictures I can to share about breast cancer. This is not easy. But it is an important message. Be breast aware, check you breasts, visit https://coppafeel.org/ for info on how to do this, do not skip mammograms, if you’re unsure about something, get it checked.’

inflammatory-bc

‘Did you know there were many different types of Breast Cancer? Inflammatory Breast Cancer is a rare, fast growing type that accounts for between 1% and 4% of all of them. The symptoms can appear over a short space of time, usually days or weeks. The most common ones are:

• warmth & redness of breast causing soreness;
• swelling or heaviness;
• ridges on the skin; 
• or the skin may appear pitted like the skin of an orange;
• some women may find a lump while others may experience pain in the breast or nipple;
• some have nipple discharge or the nipple may become inverted.

Diagnosis is often delayed as the symptoms are frequently mistaken for mastitis (infection of the breast). According to American statistics if the cancer has only spread to the lymph nodes, around half of those with Inflammatory Breast Cancer will live for 5 years or longer. If the cancer has spread to other organs, around half will live for 2 years or longer.

To find out more I’d urge you to watch episode one, series two of My Extraordinary Pregnancy on TLC https://youtu.be/UpBNn9Yjy3k still available for download and meet Heidi who was 33yrs old and 9 weeks pregnant when she was diagnosed.

As you can see, a lot more research needs to be done. Breast Cancer Care have more information here: https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/diagnosed-breast-cancer/primary-breast-cancer/inflammatory-breast-cancer

breast-cancer-care

‘This October please consider raising funds for Breast Cancer Care. Without them, my own experience would have been a much bleaker one. They provide all kinds of support and up to date information including phone lines, online forums and an email nurse service. They also campaign for better services for both Primary and Secondary Breast Cancer.

Fundraising ideas available here: https://www.breastcancercare.org.uk/get-involved/do-your-own-fundraising
I will gladly donate jam or raffle prizes to any of my friends wishing to take this on.’

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‘Don’t forget to check your breasts!  Breast Cancer Care have a handy infographic on what you should be checking for here: https://www.breastcancercare.org.uk/information-support/have-i-got-breast-cancer/signs-symptoms-breast-cancer CoppaFeel! provide a reminder service via text or email: https://coppafeel.org/remind-me/ So there’s no excuse!’

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‘Secondary breast cancer is incurable breast cancer. It’s when the initial cancer spreads elsewhere in the body. It’s terminal, it’s fatal, it kills. But it can be treated. With the right treatment, people can live with the disease for years. But too often this is not happening .

Less than 5% breast cancer fundraising goes to secondary breast cancer. 78% of Primary breast cancer patients do not know what too look out for. Too many are being referred too late for life prolonging treatment. Breast Cancer Care aims to change this. Please sign up to their Campaign: https://www.breastcancercare.org.uk/secondary

men-bc

‘Breast Cancer: Not just for girls!

Symptoms of breast cancer in men include:

a lump, often painless. This is the most common symptom. It’s usually near the centre, close to the nipple, because most of the breast tissue in men is beneath the nipple. But lumps can also occur away from the nipple

nipple discharge, often blood-stained

a tender or drawn in (inverted) nipple

ulceration or swelling of the chest area.

Occasionally, the lymph nodes (glands) under the arm may also be swollen.

The sooner breast cancer is diagnosed and treated, the better the outcome may be, so it’s important to get any symptoms checked out as quickly as possible.

https://www.breastcancercare.org.uk/information-support/have-i-got-breast-cancer/breast-cancer-in-men

alcohol

‘According to Cancer Research UK, drinking even one drink a day increases the risk of breast cancer by 5%. For every drink following that first one, the risk is increased by 7 – 12%.

If you choose to drink, Drinkaware.co.uk recommend the following:

• Keep your risk of developing breast cancer from alcohol low by not drinking more that 14 units a week
• The more you cut down on alcohol, the more you reduce your risk.
• It is best to spread your drinks evenly through the week.
• To cut down on the amount your are drinking, have several drink-free days per week.

https://www.drinkaware.co.uk/alcohol-facts/health-effects-of-alcohol/diseases/alcohol-and-breast-cancer/

triple-neg-copy

‘• Triple negative breast cancers are cancers that don’t have receptors for oestrogen, progesterone or Her2.
• Only 15% of breast cancers are triple negative.
• It is more common in women under 40 and black women.
• Hormone therapy such as tamoxifen does not work for triple negative breast cancer.
• It cannot be treated with the drug Herceptin.
• It is usually treated with surgery, chemotherapy and radiotherapy.
• The risk of triple negative breast cancer recurring is higher than some other types of breast cancer in the first few years, but after five years the risks are similar.

For more information see https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/diagnosed-breast-cancer/primary-breast-cancer/triple-negative-breast-cancer

Travelling Oop North

shut-up

Scene: Famous Northern tea shoppe; me sitting at a table; The Captain ordering at the counter.

Waitress: All I need now, Sir, is your table number?

Cap’n: Ah. It’s one of those in the window.

Waitress: The long window?  With several tables?  Could you help me out at all?

Cap’n: My wife is sitting at it.  She’s the one with the severe haircut.

He is very rude.

Feeling Thankful

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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.”’

National Secondary Breast Cancer Day

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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.

Lacy bones and new poisons

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My ‘Thank You for Poisoning Me’ card

This visit to The Doc I remembered to bring the card.  He roared with laughter.  Always good to start with belly laughs, I feel.

On the whole, the visit was not the best.  It is always lovely seeing The Doc but the news from my DEXA scan was not good.  I had suspected it might not be but it exceeded my expectations.  I have osteoporosis.  Oh goody.  I come from a long line of women with osteoporosis so it really should not have come as a surprise.  Quite why it did I am unsure.  Perhaps surprise is the wrong word.  It is too gentle.  Those of a delicate disposition may wish to close their eyes for a minute.  Basically, this news fucking floored me.  I fell apart.  Not on The Doc, you understand.  Oh no.  I was absolutely the perfectly poised patient capable of competently coping with even the most devastating news.  And let’s face it, in the grand scheme of things, lacy bones are not the end of the world.  Driving home it was another matter.  I had not had a particularly good day up to that point already.  So driving home with tears coursing down my cheeks seemed like a good idea.  Not sure the other drivers agreed but what care I for that?!

To look at this in a Pollyanna-ish way, without breast cancer I would not have discovered this for some years, possibly until I fractured my spine or something equally unpleasant.  Also, it is treatable.  It means the bone sucking Letrozole will be administered alongside vitamin D and calcium supplements and I will be started on bisphosphonates.  This is good news in many ways.  Bisphophonates were recently linked to preventing secondary breast cancer in oestrogen receptor positive post menopausal women so obviously being automatically prescribed them is excellent.  They are the routine treatment for osteoporosis and both my mother and an aunt have been taking them for years.  Of course there is a downside.  They are notorious for causing gut irritation which should be interesting with my gastro-oesophageal reflux disorder but can be given IV if necessary.  What larks!

All of this is going to be administered and overseen by my GP rather than The Doc and to that end he has given me a handwritten letter for her and I am dismissed until October 2017 when I will be re-scanned and reviewed by him afterwards.  I shall miss our three weekly chats but it is progress.  And to that I cling.

Bit Knackered

sleep

Today is my first day of not having chemo every three weeks since early June and I can announce that this returning to normal malarkey is exhausting.  I have been trying to increase my daily steps and most days this week have managed over 2000 which, believe me, has taken effort.  It is a vast increase on my average for the past few months, I can tell you.

Yesterday I had a long standing date with the theatre to see an amazing production of King Lear.  It is my favourite play.  I try to see it whenever I can.  I can now bore for hours just on the productions I have seen.  And my knowledge has gone way beyond nerdy.  It is less a case of ‘Excuse me, I think your inner geek is showing’ and more like ‘Oh my, was that your screamingly flamboyant geek streaking across the lawn there?’  Yesterday was right up there with the best of them made all the more special because being there felt hard won.

All this excitement has left me utterly spent.  Even my fingers are aching as I type this.  Tomorrow I shall return with news of hospital appointments, drug updates and scan results.  Bet you cannot wait.

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.

In Pursuit of the Hirsute

eyebrow

Today marked a moment in our household.  It was the day I brought out the razor for something other than my wickedly tenacious leg hair.  My arm pits were in need of a trim. This was probably a matter of opinion and not normally something I would announce to the world but it has been nearly five months since I last performed this task.  So I feel an announcement is excusable.

My eyebrows have also been remarked upon.  Yesterday they drew positive comments from two separate sources.  I had been remiss in noticing their reappearance so scuttled away to a mirror to establish that they are indeed looking perkier than they have of late.  If thin eyebrows are a measure of insanity then I am heading into the realms of the compos mentis.

The Captain and I have been engaged in hot debate about my other hair.  The hair on my head, not elsewhere.  Stop sniggering at the back.  Its wispy, fuzzy, odd length bits and pieces makes me want to take the clippers to it.  It is after all, approximately a centimetre in length on average.  ‘You’re quite thick in the head,’ as the Captain put it.  And we all know cutting hair makes it grow, right?  Could it be that this is an old wives tale?  Surely not!  Anyway, anyway, anyway.  My reasons for trimming it are simple.  It looks stupid.  There is no guarantee that cutting it will help with this but it may remove some of the wispy.  But the Captain will not hear of it.  And will therefore not do it.  And I am not to be trusted with sharp things alone.  Sigh.

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11 days post last chemo