Hormonally Yours

This hormone positive cancer is a funny ol’ business and I have found it particularly tricky to negotiate the medication side of things.  Initially I was prescribed Letrozole and what fun we had together!  Joint stiffness and muscle cramping were just the start.  Since a change is as good as a rest Brainy Spice and I decided try both a break for six weeks and then changing to Exemestane.  My problems got steadily worse.  The joint pain and muscle cramps were, at times, crippling but by far the worst was the way it messed with my head.  I was not sorry to say goodbye to that.

So what now?  Since January I have been taking Tamoxifen.  There are still issues but things are much improved.  But dealing with the fabulous, gorgeous, and beautifully warm weather we’ve been having has been, erm, interesting!  My biggest issues are with hot flushes, sweating, muscle cramps, and insomnia and this is how I have been managing them.

Hot Flushes

• Clothing: I have mentioned before that my clothes have been on and off me faster than a sex worker’s and this remains true.  So my first tip is to wear nothing that cannot be rapidly ripped off as soon as your temperature goes up.  Layers.  Layers are the thing.  And natural fibres.  None of your spandex or nylon, thank you very much.
• Fans: no, not an adulating crowd.  Rather, a small hand held electric fan.  I got mine from Amazon and love it because it is rechargeable!  Concertina fans are great too and easy to carry in a handbag.
• Chillow: this is a cooling pillow to slip in your pillow case for those unbearably hot nights.  Bliss.  Also handy for managing migraines if you happen to suffer.
• Auricular Acupuncture: I had a course of this as soon as I started on Letrozole and then a couple of top up sessions last year.  This worked really well to begin with but sadly, since Tamoxifen was the new kid in town, I have not noticed a difference.  But I would definitely recommend it as I had twelfth months of relief that I suspect can be attributed to it.
• Shade: seek it out wherever possible as it still allows you to be out of doors, topping up your vitamin D levels, and enjoying the sunshine without feeling like you are turning into slow roasted joint.  Or a carbonised kebab.
• Pills: the thought of yet more medication was not appealing, but thanks to the head messing that Exemestane had done, I was already taking the antidepressant Sertraline.  The wonderful Doc suggested I switch to Venlafaxine as it was known to help reduce hot flushes by up to 50%.  Sounded good to me and I can honestly say it has been incredibly effective.
• Ice: in your drinks.  Especially gin and tonic. In all seriousness, alcohol is something that may make your hot flushes worse.  But I decided life was too short to give up on it entirely.

Sweating

• Clothing: as above but when it comes to night sweats, besides the chillow, my best advice is layers of bedclothes that can be easily thrown off and frequent changes of sheets.
• Make up: I have pretty much given up wearing skin make up after it slid off my face within ten minutes of application once too many times.  I still use eye make up and lippy but that’s all these days.  The ‘au natural’ look is definitely the best one for those inclined to a sweaty face (*puts hand up).
• Lens cloth: thanks to regularly steaming up my glasses with hot flushes and sweating, I generally carry around a lens cloth.
• Ice: in your drinks.  Especially gin and tonic.  Have I mentioned this before?

Cramps

• Exercise: bit of a dirty word for me but frankly I should just get over myself.  Because on the days when I have done more than just lounge about, I definitely have fewer problems with cramping.  Either a short energetic walk or a longer more ambling stroll works wonders.
• Fluids: drinking plenty and keeping hydrated also seems to help.  I tend to drink a lot of water anyway but on the days when I have less, again, I notice the cramps are worse.
• More pills: Quinine, to be precise.  I am not taking it daily, rather I take it as and when I need it on the advice of my GP.  Since taking it I have fewer nights when I am leaping out of bed with leg cramps.
• Tonic: forget the other drinks.  Tonic has quinine in so it’s basically good sense to drink it.  But it would be rude not to add gin.

Insomnia

• Audiobooks: I have always been prone to insomnia but Tamoxifen or Venlafaxine have taken it to a whole new level.  Chemo also left me with tinnitus.  To combat the tinnitus while falling asleep I started listening to audiobooks.  It is delightful.  Just like having a bedtime story read to me as a child.  The upside of this is always having something to play when I surf the night on the surface of sleep rather than sleeping soundly.  Now I find I can tolerate periods of wakefulness with far greater peace.
• Exercise: that old chestnut.  Again.  But it does work.  I definitely sleep better for a good walk in the fresh air.
• Windows: sleep with them open!  Earplugs are a godsend if your neighbourhood is noisy.
• Time: you have more of it for your gin and tonic so it’s not all bad!

I am sure there are other tips I have missed but these are the things I find most helpful.  With all this, I have not yet found the sunshiny weather something to dread.  Something to manage, yes, but it is manageable.

Guess where I’m tattooed …?!

Goodness, but I have been remiss in keeping you up to date!  When we last spoke I was ripping off Mariah Carey songs.  Since then I have gained a nipple, we’ve all had Christmas, 2018 has begun and the Captain and I have once more fled land for a summer on our narrowboat.

So let me tell you about my new nipple.  That is not a sentence you hear very often, is it?  Well, actually, it is one I seem to say a lot these days … And you must all be aware just how hard I am finding it NOT to post actual photos.  In the interests of decency, I just do not feel I can.  But another side of me is itching to!  Nevermind, personal flashes are always available.  Just ask when we meet.  I need little encouragement.

My appointment with Surgical Spice went swimmingly.  I was quickly ushered into theatre and while it was very bizarre being awake while all around were clearly performing surgery, it was also pretty interesting.  At least it was for a while but after an hour I began to get a bit bored.  I felt absolutely no pain as the local anaesthetic was clearly administered well.  I could not see anything at all but in my old age I seem to have become a bit squeamish so this was probably just as well.  It took far longer than I anticipated but I have to say the results are seriously impressive on many counts.  Lots of people have asked me how the surgery was achieved and I think the technique used was the one in this YouTube clip:

Once again, the use of antihistamines meant that I had no reactions to the dressings used – hurrah!  And all healed well.  Very well.  In fact, I cannot quite believe the difference having a nipple makes.  It has turned my somewhat lumpy and misshapen chest mound into a proper breast!  And one that I have bonded with.  Instead of rushing out of the bathroom and avoiding mirrors, I find myself admiring my reflection.

This was a procedure that I very nearly did not bother with.  I suspect the only reason I did was that I was on something of conveyor belt and it required too much energy to get off.  I absolutely did not believe that it would make any difference to how I felt about my body image.  To feel good about how I look after all the surgery and treatment I have had is really quite remarkable.  To anyone who is considering whether to continue with this surgery or give it a miss, go for it.  You will not regret it.

But this is not all I have been up to in the breast department!  You see, once healed, while looking very good, my new nip was a bit pale and wan.  Consequently the final part in my reconstruction happened last week when I got inked!  Oh yes, I am now a member of the tattooed masses.  All on the NHS too.  I have been colour matched to my other more genuine nipple and once again, am seriously impressed with how good the finished result has been.  I may need it topping up at some point apparently but the thing I am most looking forward to is sidling up to unsuspecting teens and whispering ‘Guess where I’m tattooed!’

Christmas Nipples

Tomorrow I get to spend some time with Surgical Spice again.  Since my mastectomy and LD Flap reconstruction in March 2016 I have been somewhat deficient in the nipple department to the tune of one.  My left one went the way of unwanted surgical debris and then my right one took a bit of a hammering a year later during my reduction.  However, although I now have a pair of broadly symmetrical knockers, it is still something of a surprise to only be greeted by the one nipple.  My left foob (fake boob) looks a little naked without one.

It is hardly crucial life saving surgery but I have to say I would be sorry to never have one so I am delighted that the NHS is balancing me up.  Surgical Spice is going to be creating something out of what I already have, meaning my expectations are not that high.  The phrase ‘silk purse, sow’s ear’ keeps ricocheting around my head but we shall see.

Meanwhile, having a cold and clearly too much time on my hands, I have rewritten the words to All I want for Christmas with apologies to Mariah Carey.  Sing along now!

I don’t want a lot for Christmas

There’s just one thing I need

I don’t care about the presents

Underneath the Christmas tree

I just want a matching pair

So that when I dare to bare

My wishes will come true

All I want for Christmas is two.

I don’t want a lot for Christmas

I have only one desire

That when looking in the mirror

I’ll see something to admire

I just want to be consistent

In the Bosom Category

Santa Claus please make me happy

Give me Christmas symmetry.

I don’t even want gin tipples

More than my new Christmas nipple

Make my wish come true

All I want for Christmas is two.

Dealing with a Post Cancer Christmas

Last year I had my first post cancer Christmas. I was diagnosed in February 2016 and following initial surgery I completed chemo at the end of September. Contemplating Christmas when only the previous year I had been totally oblivious to the cancer lurking within me was a bit weird and I was more than a little overwhelmed at the prospect.

So, I decided a plan was in order: 1) be kind to myself; 2) have fun; 3) keep it simple.

Part of being kind to myself was effecting a plan that would allow me the time I needed to cope with the exhaustion that was crippling me post treatment. For once, I took the easy present option: all my shopping was done either online or with a friend in direct sales. Amazon and Neal’s Yard got big business from me (For Christmas 2017, my lovely Neal’s Yard friend is donating 10% of any sales to Breast Cancer Care, hurrah!)! What’s more, while I worried about what the recipients would think about their gifts, bought without the hours of trudging around shops that normally occurs, I really needn’t have bothered. They were all delighted. Maybe I had a free pass because of the awful year, or maybe they were genuinely delighted. I know I was, and if my friends and family were faking, they were REALLY good at it. Top tip: hit the online shops – it’s so much more realistic in the aftermath of treatment than days of fighting with the Christmas crowds.

Another part of being kind to myself was being smart about the entertaining that goes hand in hand with Christmas. Traditionally, we have an immediate family celebration on Christmas Day with a day for extended family on one of the bank holidays. This year my sister was only too glad to host the extended family day while my children decided to spend the main day with their in-laws leaving my husband and I to enjoy a rare Christmas Day to ourselves. We then celebrated with our children and grandchildren on another day when a no pressure supper was more than acceptable. Top tip: use your relatives if at all possible to play hosts – my experience was that they were only too pleased to help, your family are just delighted to have you around so let them carry the load.

Instead of cooking, I made the most of pre-prepared dishes – something I would never normally do. But there is a time and a place. Instead of weeping with the exhaustion of it, I enjoyed a day of relaxation and peace. Top tip: pre-prepared dishes can really come into their own for a Christmas feast.

The ‘having fun’ part of my plan was super enhanced by the news received on the 21^st December that my bone pain was just that, pain in my bones. Almost certainly a combination of a rubbish lumbar back, aromatase inhibitors, and osteoporosis. But this was a massive cause for celebration as I had had a run of tests looking for secondaries. To have this ruled out days before Christmas meant I spent most of the festivities just beaming at my loved ones. But I am not suggesting you engineer these circumstance in order to add a frisson of delight to your Christmas. Seriously, that is a BAD idea! A better idea is to pick and choose your social engagements with care. I would have felt cheated and depressed if I could have done none of the things I normally do. So, while some things were impossible – an MRI scan appointment slap bang in the middle of an annual Christmas dinner for example (NHS not working seven days a week, 24 hours a day? Yeah, right, that’s exactly why my appointment happened at 7pm on a Saturday night!) try to make sure you can attend others. I picked with care. At this point I had still not managed a whole evening out. What I am saying? I had not managed an outing passed 7pm at all! My first trip was to go carol singing with friends in our local pub. The whole evening was no more than two hours. But I was with friends, doing something I enjoy, being part of the festivities. I loved it. More importantly, it was an event that I could give as much to as I was able but could slip away without causing a problem. It was the sort of evening I could have cried off without causing offence. Top tip: choose your festive events with care – pick ones that allow your attendance to be decided upon on the day.

It can be hard for family to understand that while our treatment is over, we are far from recovered. Christmas is often a time of heightened emotions and while our loved ones are just wanting everything to be back to normal (because cancer? That was so, like, yesterday!) it is important that we are kind to ourselves and pace ourselves well. I scheduled nap time throughout the Christmas fortnight. I am lucky not have young or dependent children living with me so it was relatively easy to do this. I rarely slept, but I did make sure I enjoyed an hour or so of solitude in which to recharge. When this was impossible, I tried to have a rest day between each busy day. This is where the ‘keep it simple’ part of my plan really came into its own. Remind yourself that thanks to your treatment, Christmas WILL happen again and next time you will be even more recovered and far fuller of energy. Top tip: nap time – you know it makes sense!

I found that the only way to help my family understand my fatigue was to be honest with them. I practiced saying no and rehearsed simple statements explaining that I was still too tired to do everything. I was by far the most likely person to demand too much of myself so rehearsing my answers was really designed to keep myself in check. Top tip: be honest and do not expect to overachieve this year.

Come the first week in January, I was able to reflect over the Christmas fortnight and honestly feel it had been a huge success. It was different from normal but its simplicity only added to my enjoyment. This year I have started preparing earlier but still intend to keep things as simple as possible. I am anticipating with pleasure my usual role in the celebrations but will still be keeping an eye on my levels of fatigue. Most of all I am looking forward to celebrating another year of life with my family and friends.

Half-life

Today I saw the Doc again.  And as always it was a real pleasure.  I do love this man.  Officially, it was to review my lacy bones.  My DEXA scan of a few weeks ago showed that all is stable – neither worse nor better, which given the bone leaching properties of Aromatase Inhibitors is good news indeed.

Of course, a general review was undertaken and on being asked how I was, I promptly burst into tears.  Not my finest moment.  I have been really struggling with side effects from the Exemestane.  My sleep is rubbish.  I am woken several times a night by muscle cramps and joint pain.  The joint pain is so bad that there are days when it is hard to physically get out of bed.  Kneeling down is something I have been avoiding as much as possible because hauling myself back up again is extremely tricky.  I am hideously weepy (see above for classic example!) and the fatigue is overwhelming much of the time.  And everything has dried up.  And I mean EVERYTHING!  My skin, eyes (now need drops), vagina (thinking of renaming that the Sahara).

I have had some success in tackling many of these symptoms myself.  My joint pain has improved since I’ve been taking Glucosamine 1500mg and Chondrointin-Sulphate 1200mg a day based on this study. Thanks to Liz O’Riordan’s blog, I have now been prescribed Yes Vaginal Moisturiser which is a massive help.  However, despite this, things have remained pretty grim.  Since arriving back in our land based home, It has felt like I am living something of a half life, with fatigue, lack of sleep and joint pain controlling everything I do.

The Doc went through everything.  Having tackled my symptoms we then looked at my prognosis which given that I have had both surgery and chemotherapy is pretty good, despite an Oncotype Score of 28 and a grade 3 tumour on biopsy.  The hormonal therapy does make a difference, but there comes a point when quality of life has to be taken into consideration.  But I do not know how you say no to something that has a proven ability to elongate your life.

For now, the Doc has suggested I take a break.  My hormone therapy is to be packed up until after Christmas in the hope that I will get some respite from the relentlessness of hideosity I have been experiencing.  I will then see him in early January and will start on Tamoxifen, with a side order of Venlafaxine or Amitriptyline if necessary.

Levels of Whelm

Hello again.  Did you miss me?  You just knew that I could not shut up for long though, didn’t you?  It appears I need this blog more than I thought.  Recently I have read a couple of other blog posts (here and here) on post treatment life which greatly encouraged me.  I am not alone and that is really rather lovely.  Thank you Sue & Laura ❤

I have decided this Return to ‘Normal’ Life is overrated.  I seem to run better at the 2.3 miles per hour life on the canal afforded me.  Since arriving back on dry land exactly 2 weeks ago I have been brought face to face with just how knackering everyday life is.  Granted I have had my Mum with me since she has been recovering from cataract surgery.  And that has involved trips to and from Oopnorthshire a couple of times.  But even so.

Life post chemo/cancer treatment should not be about constantly avoiding one weepy outburst or another.  And yet that is what seems to be happening of late.  I am only ever one tissue away from becoming totally overwhelmed.  I know this means I am too tired but managing that is not something I am doing very well at.  Apologies to all and any who have been on the receiving end of one of my episodes.  I think, basically, I should not be allowed out.  Or allowed in.  I think I should probably be confined in a darkened room, though that is worryingly appealing …

Thanks to Exemestane, every night’s sleep is broken multiple times which makes me think I never sleep deeply.  Then again, it may not be the drugs, it may simply be good ol’ chemo fatigue.  I career from one obligation to another without ever really feeling that I cope with any of them.  I can control a certain amount of stuff, but not the relentlessness with which the unexpected occurs.  I seem to only have the energy to cope with a crawling hand to mouth existence when really I would like to soar.

One day, maybe, perhaps.

I should add: I have a friend.  He was receiving treatment for cancer a few years ago when I first met him.  He experienced all sorts of knackeredness for some time after his treatment ended.  This summer at an event we both attended, while I was snoozing in my bed, he was strutting his funky stuff all over the dance floor.  He is my Ray of Sunshine and gives me hope.

 

Finally

Writing here has been an incredibly helpful experience.  It has helped me to process my many varied and conflicting emotions.  It has given me a safe space to scream, to cry, to joke, to connect with others, and to keep people up to date with my progress.  Primarily it has been a journal, just one that I have made public.

I am not yet finished with my treatment.  I still have 4 more years of Exemestane to endure.  I still have a few more stages of reconstruction to undergo.  And while I will undoubtedly blog these events along the way, now feels like the time to gather altogether in book form.  So that is what I am doing.

I hope the bulk of my story is now written.  I hope occassional updates will be all that are seen here.  Like everyone else who has ever had cancer, I live knowing that it may return.  But I strive to keep that knowledge firmly at the back of my head and to live fully in the present.

Thank you for walking with me,

Helen x

Reflections

Recovery is an odd business.  I am basically well.  Very well.  Gloriously, deliciously, delightfully well.  And I am revelling in that.  Ask me how I am and chances are I will reply with great enthusiasm that I.  Am.  Well.  Because I am.  Really.

However.

You just knew that was coming, didn’t you?  As time marches on I find more things that are not quite as they were.  Bits of me where chemo has left its mark.

I seem to have been left with permanent tinnitus.  I sleep now (when I sleep) with an audiobook playing to drown out the incessant noise I hear otherwise.  It is not all bad.  I am working my way through some fabulous tales and having a bedtime story told to me as I drop off is really rather pleasant.

I get very very tired.  I believe this may go on for some time.  I am fine, fine, fine.  And then I am so not.  My body seems to revolt with tiredness.  I not only stop sleeping, I become far too intimate with the toilet.  Not something that happened before.

My skin is very friable.  It tears easily.  It dries out more readily.  It becomes sore at the drop of a hat.

My internal thermostat is on the blink.  This may be down to my hormonal treatment, my exemestane, but it is not just hot flushes.  Which, frankly, are not that bad.  I become cold very quickly.  In temperatures that would not normally cause me to feel cold.  It is a little bit like permanently having the erratic thermostat associated with a viral infection with none of the poorliness.

I have muscle pain/weakness in my left shoulder & back where my mastectomy and reconstruction surgery took place.

On top of this, there are the muscle cramps and joint aches from the exemestane.  I have another four and half years of it so there is little to do but put up with these but they are not much fun.

So there you have the physical stuff.  But I think the worst moments are when the ol’ cancer demons come to call.  Whether it is the whispering voices that say it is returning; the flash backs to the grimmer parts of last year or unexpected glimpses of a different shape as I pass a mirror or see a reflection; all serve to remind me of what has been, what has changed and what could have happened.  It leads to a lot of mixed emotions that can be overwhelming.

Spending time away on our boat has been amazing therapy.  It has provided me with the opportunity to reflect, the time to grieve, the time to heal and the time to recuperate.  But I miss the talking one does when one is surrounded by people, by community, by family.  So I am hugely grateful that one of my best friends is coming to stay next week.  We have much to celebrate as she has just reached her five years post successful treatment for Non Hodgkins Lymphoma.

In the meantime, this poem has given me much solace.  It reminds me very much of my belovéd Psalms, in particular 23

The Peace of Wild Things

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

Wendell Berry

Living the Dream

Time for an update, methinks.  I am well.  Incredibly well.  And it is marvellous.  You can tell I am well from the above photo.  Taken today while watching Andy Murray play Benoît Paire on a massive television screen while sitting in a deckchair in Merchant Square, Paddington Basin, sipping Pimms.  Life does not get much better, does it!  You can see my unruly mop continues to grow and life is really good.

We have been boating for over three months and are not in a hurry to return to dry land.  So keen are we on boat life that we decided to combine a few of our favourite things while in London for the week and share: next Thursday 13th July we are hosting an Afternoon Tea for Breast Cancer Care while moored in Rembrandt Gardens, Little Venice.    This way, we get to share food, jam, boats and simultaneously thank Breast Cancer Care for everything they did for me and everything they do for others.  I know a lot of you will not be able to come but if you are in the area we love love love to see you.

Menu to include:

Sandwiches – Sausage, Red Onion Marmalade, Salad; Brie, Sloe Jelly & Cucumber; Egg, Mayonnaise, Spring Onion.

Scones – Selections of Wild Side Jams & Cream

Cakes – Lemon Drizzle; Light Fruit Cake; Strawberry Shortcake; Banana & Toffee Muffins; Raspberry & White Chocolate Muffins

Puddings – Chocolate Mousse; Pimms Jelly

Drinks – Tea; Coffee; Wild Side Elderflower Pressé; Wild Side Grandma’s Homemade Orange Squash

Sounds good, no?  Also planning to run a tombola and possibly a quiz.  Obviously the aim is to raise money for Breast Cancer Care but it is also to celebrate being alive and well.  Seeing you would be fabulous.  Please come and tell me you read about it here!

If you are unable to come but would still like to donate, there is always the Just Giving page: https://www.justgiving.com/fundraising/helen-tidy1

Thank you x

Well, it’s a marvellous night for a moon walk …

… or at least it will be on Saturday 10th June.  Which is in precisely 12 days time!

My mad sister and niece are going to be taking on the MoonWalk Scotland and walking 26.2 miles to raise money for research into prevention of and better treatments for those with breast cancer.  If twenty six (point two) miles were not enough of a feat, they are doing it overnight.  In their bras.  Madness, I tell you.  Madness!

However, I do feel a certain responsibility for their efforts.  They have already suffered blisters, pulled muscles, sunburn and all manner of fatigue in training and that is before the event has even begun.  It is all very well saying that adrenaline will kick in on the night and carry them through but it is still a gargantuan effort.  And they are going to be looking, frankly, ridiculous.  They will be wearing yellow bras, decorated with sunflowers and bees.  The sunflowers are partly my fault as they remind my sister of me.  Tall and beautiful, obvs, not loud and brash at all, oh no!  They also remind us both of our Dad and were symbolic of fundraising for cancer research and better treatment and flashing your tits in the film Calendar Girls.  The bees are because they are Team Bee, the first letter of their surname and a nod in solidarity to their Mancunian roots after the horrific events of 22nd May.

They have pledged to raise £500 and are well on their way but still need a bit more to push them to their target, which they would be very happy to exceed!  If you are at all able to do so, please go to their fundraising page and sponsor them.  They are not just doing this for me, but for all of us who have had the misfortune to experience this hideous disease.  And if you have a moment, go to the MoonWalk’s Where The Money Goes page and take a look at the many amazing projects, grants and research that they support.  If you have visited Penny Brohn, Maggie’s Centre or The Haven then you will have benefitted from MoonWalk support.  If you have used a cold cap system, it could have been provided for by a MoonWalk grant.  If you were treated at Christie’s and visited their Complimentary Therapy Unit, again you have benefited from the MoonWalk’s fundraising.  And of course, the research they fund could help prevent many many more of our friends, relatives and loved ones going through this ordeal.  Close to my heart, I was gladdened to see that they are also funding vital research into secondary breast cancer.

So, their fundraising page again: https://moonwalkscotland2017.everydayhero.com/uk/nicki-and-sarah

I am tweeting support for them throughout the night using inspirational walking songs (oh yes!) to encourage them along the route (mwha ha haa haaaa!).  Do join in if you’re on twitter: @wildsidejam @nickibaguley @sarah_baguley #SongsForWalking #MoonWalkScot

Thank you x