Moving Forward

hot-flush

There are two things I have been getting up to without telling you.  Both relate to my recovery.  Both are about progress.  I hope.  Both exhaust me.  But so does getting out of bed so that is not news.

First up, is Breast Cancer Care’s Moving Forward Course.  As I approached the end of my chemo I had a sort of mental tick list of Things to be Done.  And this was on it.  I did not stop to consider whether or not it would be beneficial.  I just signed up assuming it would be.  I am now half way through the four weeks.  For the past two Monday mornings I have been found in the building where most of my midwifery theory was delivered.  It is more than a little strange being back there, especially under such differing circumstances.  So far, I am not sure I have learned anything new.  For me, the benefit has been to be in room with nearly twenty others who have been treated for primary breast cancer.  We are all at differing stages of recovery.  I think I am the most recently out of chemo, most seem to be about a year on from active treatment.  The best moments are when one person voices a concern or expresses an opinion and a ripple of recognition or agreement trickles round the room.  We have much in common.

Secondly, I have been tackling my hot flushes.  Or rather, my hot flushes are being tackled for me.  Remember the lovely Complementary Therapy team that I had been referred to?  From them I received reflexology treatment during each chemo cycle and it was wonderful.  Having completed that, they then signed me up for Auricular Acupuncture to treat my hot flushes which are still a sight to behold.  At times, my glasses steam up, such is their force.  Auricular Acupuncture has a good reputation for treating hot flushes so when I trotted along for my first session on Wednesday, I had high hopes.  There were four of us being treated and we were arranged in chemo style recliners before having both ears stabbed with five needles.  The initial discomfort soon wore off and the next thirty minutes floated by in a dim lit haze to waft-y pan pipe-y music.  Keeping my eyes open at the end of the session was harder than usual and I foresee sleeping overcoming at some point during the next seven sessions.  Already though, I have noticed a difference.  I have still had some ferocious flushes but overall they have been far less.

My only other news is that I am tireder than a tired thing popping tired pills at the Tired Olympics.

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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:

breast_cancer_awareness_month

‘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.’

events-breast-cancer-awareness-month-october-pink-fight-for-a-cure-ta-tas-boo-bees-boobs-best-facebook-timeline-cover-banner-photo-for-fb-profile

‘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!’

secondary-bc-13th

‘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

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.

That was a Blast – Days 16 to 18

friends

I am liking this whole Good Week malarkey.  This weekend has been an absolute blast!  The Captain had abandoned me – something about earning a crust – so my trusty and longstanding friend with a penchant for dragonflies came to stay.  We used to share a flat as students so she is accustomed to living with me.  Though it has been a while.  Like, that was last century.  So last century, we could not even see the millennium approaching.

This weekend was all about capitalising on my wellness.  She arrived on Friday bearing gifts.  While she unpacked, I opened the prosecco saying, ‘I’m not that good at alcohol currently’.  The silence was palpable.  If she wore glasses she would have peered over them and the look she gave me explicitly said ‘well, you must practise.  Push on through!’  So I did.  It would have been rude not to.  She is my chemo guru.  She knows what she is about.

On Saturday we drove to Chatsworth House and did Lovely Eating and Looking At Things while Walking About Quite a Lot.  The chairs they put out for us were the same shade of purple as both my nail varnish and cardigan.  Considerate, we thought.  The evening was spent in Vegetable-like Contemplation of the Tellybox.  To link the two experiences we watched The Duchess, a film about the Duchess of Devonshire and excitedly (don’t judge, I don’t get out much!) set out trying to spot glimpses of the house we had just visited.  We failed.  Clearly we should have paid more attention.  Or maybe we were distracted by the gin.  For it is a poorly kept secret that my gin habit has been somewhat diminished of late. In fact, I had inexplicably gone off it.  I say inexplicably, because what better time to be drinking gin than when one is having chemo for breast cancer?  However, my friend once again demonstrated her true worth by downing a gin with me.  And you know what?  It was bloody good!

Today, I have had a morning of pampering.  First a massage and then a facial.  I so love having friends who a) understand the value of alcohol and b) have skills!  She has left me now.  The house no longer rocks to the sound of raucous laughter.  Instead, a satiated quiet has descended.  I shall have to take my exhausted body to bed shortly but even if I suffer for the next couple of days, it will be worth it.

Timing

help

Every year the Captain and I look at each other after Christmas, assess the damage and embark on some form of weight loss campaign.  We have been doing it for nearly the whole of our marriage.  Over the years it has got harder, but each Spring we have lost an average of a stone and a half each.  Consequently my summer wardrobe is generally slightly smaller than my winter one.

This year, the weekend of our annual appraisal was followed by my summons to the Recall Clinic and so on and so forth.  Strangely, this did not affect the diet well.  Initially I did not eat but I have more than made up for that since.  And despite having a kilo of me lopped off in surgery I am exactly the same weight now that I was at Christmas.

This has meant buying almost an entire summer wardrobe.  Not only do I need clothes that fit me now, I also need clothes that are ‘comfy’ as I am assured that most people put on weight during breast cancer chemo.  And then, of course, there will be the difficulty in shedding the excess timber thanks to the delights of hormone therapy.  Lovely.  I am not looking forward to the post chemo diet!

De-pinkifying

Screen Shot 2016-02-21 at 18.14.30

Have you noticed how everything to do with breast cancer is pink?  The above picture is a small screen shot from a Google image search for breast cancer.  The pinkness of this disease is overwhelming.  I do not approve.  This is a tough motherf*cker of an illness and painting it wishy washy pink seems a bit feeble to me.  Out of idle curiosity I did a similar image search for testicular cancer to see if it was a case of pink for girls and blue for boys.  Not so.  The boys, it seems, get multi coloured.

I am rapidly going off pink.  So much so that when our boat shower room curtains fell apart last week, I decided the whole thing needed to be de-pinked.  I had accessorized it in fuchsia pink a few years ago when feeling the lack of my daughter one boating trip.  There was way too much testosterone on board and I needed some balance.  However, now, I am OVERDOSING on pink (do not give me pink flowers!  Or pink anything!  Just saying).  Even the ‘route’ to the breast unit at the hospital is marked out in pink, for pity’s sake!

So, for the princely sum for £39, I and my very ancient friend (ancient as in known a long time rather than agéd.  Although she IS older than me 😉 ) totally re-did my shower room and it is now blue.  Because blue is beautiful.  Blue is best!  And it was so good to do something totally unrelated to cancer for a short while.

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