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!

Cancer Cow

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Being ill does things to a person’s head.  The insides and the outsides do not match up.  On the whole this is a good thing.  The insides of my head are pretty messy.  I lose things in there.  But we all like to think we are generally ok.  As in nice.  Don’t we?

I cannot be alone in believing that when adversity came calling I would greet it like the heroine of a Victorian moral drama.  I would be a Dorothea Brooke or a Jane Eyre.  And when I fantasized about funerals and mortal illnesses, people would always admire the stoicism with which I conducted myself.  My general deportment would obviously have something of the oppressed about it, but my inner bearing would overwhelmingly convey fortitude.

I do not recall ever thinking I would turn into a cow.  That I would be reduced to snapping at my dearest friends; being a bitch to my husband; and generally turning into the Bridezilla of cancer to all around.  Cancer has robbed me of my ability to function beyond a hand to mouth existence.  In my need to focus on surviving, it is easy to forget common decency and manners.  And the very people I love above all others get caught in the cross fire.

Being ill does not excuse this.  It is acceptable to be exhausted.  It is acceptable to struggle to function outside my bubble.  It is acceptable to not cope.  But it is not acceptable to take out my anger and frustration on those around me.  The really horrible thing is, I would love to promise to be the Florence Dombey of chemotherapy but that is not going to happen.  I am not going to morph into some angelic being who bears all with grace and serenity.  I suspect I am going to be foul and loathsome.

Be nice to the Captain.  He is going to need it.

 

Food, Glorious Food

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You do not have to know me very well to know that I enjoy cooking.  I run a food company for goodness sake!  Prior to being diagnosed with cancer, I had only ever lost my appetite once when a cold removed my sense of taste for a few days.  It is reasonable to say that I love food and all things relating to it.  So the prospect of the FEC-ing chemo interfering with that is not a happy one.

I think everyone associates chemo with nausea and vomiting.  I know the medical staff load you up with anti-emetics so I am hoping this will not be too bad.  Following on my puke-tastic time after surgery I have been promised Emend, a top notch drug.  Only time will tell if it works, but I am hopeful.  However, there are other prospects.  Sore mouth, bleeding gums, metallic taste, and all sorts of other delights.  With this in mind, the Captain bought me The Royal Marsden Cancer Cookery Book.  It is lovely.  All sorts of delightful recipes with a grid listing which are suitable for particular symptoms.  So for a sore mouth, one might be tempted by a Blueberry & Avocado Smoothie or Pea & Pancetta Risotto.  For nausea, there’s Green Tea & Peach ice lollies or Elderflower Jelly.  While still on the mouth theme, how about Cinnamon French Toast with Apple & Blackberry Compôte or Mongolian Stew for changes in taste?  All sounds a bit delicious to me.

I have begun to fill the freezer with such goodies in order to have some things on hand when required.  Inevitably the recipes have had a little tampering.  I am not used to cooking while having painted nails so the Celeriac, Lemongrass & Lime Soup with Nail Varnish Chippings should be interesting.  When I have done a few cycles, I will try to reflect on which recipes I found most helpful.

Hanging on by my Nails

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Really, that should read ‘Hanging on TO my nails’ but what care we for convention?!  One of the side effects of the FEC-ing chemo I am to have is that it will muck about with my nails.  Or at least, it is a side effect that many report.  One of the drugs reacts with the UV light and hey presto!  The yellowing nails of a serious smoker result.  On top of this, ridges form, a bit like rings through tree trunks, for each cycle of chemo.  And sometimes, nails may actually fall off.  Sounds super, doesn’t it?

Consequently, I am keen to avoid this.  Apparently, a bit of attention and a lick of varnish could make all the difference.  I have never been good at doing my nails.  I hesitate to confess it, but I am actually a nail biter.  Not through nerves.  Just sheer idleness.  Why use a pair of scissors when I have a perfectly good set of gnashers that will do the job without have to shift my lardy arse?  For now, though, I am a changed woman.  It may be temporary.  It almost certainly will be temporary.  But currently I am the proud owner of all sorts of manicure accoutrements.  Who knew there was so much to buy?

There are inevitably problems.  The first is: I have no skill.  This is not me being modest.  It is a genuine impartial assessment of my nail painting talent.  The second problem is: to block the UV light out, I need to paint in a dark colour.  So we have no skill + dark nail varnish?  This is not a happy combination.  The third and final obstacle is: since surgery, my left arm shakes when I try to use my fine motor skills.  Thus rendering my incompetence even worse.  Despite practising for many days, I am not improving.  Think five year old let loose in Mummy’s make up drawer.  So bad are my efforts that the Captain has come to my rescue.  Just look at that picture of him as he tackles my tootsies.  What a star!

Hair today, Gone tomorrow!

Hair

Today has been all about hair.  It began with hair removal.  You know, just the routine stuff.  Slapping a bit of Veet on the bikini line.  Running the razor over the legs and arm pits.  It is a routine I will not miss.  But it did feel odd.  Doing it all today.  The irony was not lost on me.

I did not plan it this way.  It just happened.  You see, today I had an appointment at the wig fitters.  And it is not every day you get to say that.  ‘What are you doing today?’, ‘Oh, nothing much, just popping along for a new syrup.’  It does not run off the tongue, does it?  Yesterday, during my pre-chemo chat, I was given a voucher for a wig to take along to a supplier.  Gone are the days of NHS Wig Woman hiding in a cupboard somewhere in the bowels of the hospital surrounded by boxes of grey hair pieces all looking much the same.  Now, I had to make an appointment and go to the specialist retailer which was by far a much more preferable experience.

Knowing this was coming, I had booked some weeks ago and arranged to take my hairdresser buddy with me.  We share much else besides the same hairdresser but it did seem appropriate.  Although the pressure was on: ‘Make sure she chooses well!’ our hairdresser charged her.  I was guessing this meant that the Donald Trump toupée was out and the 118 scouser look was a definite no no.  The look I went for in the end, was as close to my norm as possible.  I reasoned that on the days I choose to wear it, I will want to feel like me rather than striking out in a new style.  I am going to have buckets of time for new styles once it all begins to grow again.

Before making a decision, I tried on several wigs in many different styles and varying colours.  But true to normal shopping form, the first one I tried on was the one I came away with.  I have an Attract Petite in Sugared Walnut and am besides myself about it.  I have never, but never, owned anything before with petite in its description.  This is indeed a moment to savour.  I am not sure what the petite bit refers to as my head is on the enormous side.  Hats are generally a struggle, even Christmas cracker hats split immediately.  So I just cannot wear them.  Shame.

How often I shall don my syrup remains to be seen.  After only a few minutes wear, and with a layer of hair for comfort, it was still hot and itchy.  But at least I now have it as an option.  And it is not bad.  Not bad at all:

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To complete the hair raising experience day, on my return home I decided to book an appointment with HeadStrong, the Breast Cancer Care advisory service for hair loss through breast cancer treatment.  That will be happening the day before my first chemo.  I will have an hour of one to one tuition on scarf tying and hat wearing.  Excellent.  I like a hat.  It is a fair old trek from our home but the Captain is coming with me – possibly to brush up on his piratical bandana skills – and we will go out for a Last Day Before Chemo Lunch.  Sounds like a plan.

Pre-chemo chat

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Today has loomed large on my calendar for some time.  For some time, that is, in the weird and wacky elasticky time conundrum that has clouded my head since cancer came to call.  In the normal world, I think I have only had this appointment for an unbelievable two and half weeks.  In my cancer infested world that two and half weeks is more like several months.  Time has become decidedly odd.  It is not my friend.  Anyway.  The appointment in question was my first date on the chemo unit.  I got to turn up, be shown around and have a ‘little chat’ with one of the nurses.  Note to self: do not use phrases like ‘little chat’ in connection with major life incidents.  Ever.

The unit is unexciting.  It consists of several individual bays mainly with large chairs although one or two had beds.  There is a kitchen for our use and I was encouraged to bring in drinks or snacks/food in with me.  Before I can have any chemo, I have to have blood taken each time.  This needs to happen 24 – 48 hours beforehand so a double trip to the hospital is in order.  On the upside, they offer two for one car parking, or buy one get one free.  Not as in parking a second car for free.  Rather, the second trip is the freebie.  So the Captain and I will not be travelling in convoy.

Once the bloods are done, the drugs are made up and the cocktail will be administered via a peripheral line.  Hopefully.  Historically I have not had the best of veins.  They assure me they will be fine.  Some units use various sorts of permanent access lines (PICC / Hickman) but here, they stick to the more usual cannula unless there are problems.  The list of side effects was gone through in some detail, and a folder full of information was handed over which I will duly digest at some point.  It is very sobering hearing all the gruesome possibilities.  One could even say that it does not look like it is going to be a barrel load of fun.  I found myself zoning out at various points.  I think sitting in the unit, hearing all the horrific possibilities, made me want to absent myself anyway I could.  I do not think I missed much.  All of it has been given to me in written form anyway.  Just in case.  One might think they had come across this issue before.

Sick Pay

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Friday’s appointment with the Citizen’s Advice Bureau (CAB) turned out to be marvellous.  I was extremely sceptical beforehand.  I knew that Macmillan offered grants for people in certain circumstances, and I also knew I did not qualify.  I was not aware that anything else was available but figured it would not hurt to go and see.

Since cancer came along to bugger up our plans, we have taken something of a financial hit.  My business is not lucrative, but we were anticipating being able to rely on my income while the Captain was on his unpaid sabbatical.  We do have savings but had hoped they would last longer than they currently look like doing.  Especially given that cancer is proving to be hideously expensive.  It is shocking the number of extras that are needed.

The CAB woman was incredibly helpful.  Both the Captain and I had wrongly assumed that because I am self-employed I do not get sick pay.  After all, I am not earning, so how can I pay myself?  However, because I pay Class 2 National Insurance contributions, it looks like I will qualify for Contribution based Employment Support Allowance for the duration of the period I am unable to work for.  Applications are being filled out and will be sent in forthwith.  If my claim is successful, then my payments will be backdated to the 1st March.  What a difference that will make, hurrah!

Missing Links

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Yesterday I saw Surgical Spice again.  This time it was just me and her.  We had no nurses, no extra doctors, no hangers on.  It turned out to be quite a giggle.  She is thrilled with her handiwork and I have to say, I cannot blame her.  It really is beginning to look rather good.  In fact, I rather think it has moved on from its shoubsicle stage of development.  We’re not quite at the fully fledged breast stage.  We are really quite a long way off that.  But we are heading in the right direction.  Thanks to the enforced surgical ‘rest’ that chemo will give me, the next phase of my surgery will not now happen until I am done with the poison.  We will regroup in the Autumn when I shall be rocking the slaphead look but will be busily regrowing hair and cells and all sorts.  Just not cancer.  I shall not be regrowing cancer.  Just saying.  But I am running ahead of myself.

There is something decidedly odd about having another woman handle your breasts quite as much as this woman has handled, and will no doubt continue to handle, mine.  She complimented me on the softness, the shape and the general pertness of my newbie.  And then went into raptures over my flap.  I cannot blame her.  It is rather sweet.  In an Oh-My-Life-There’s-No-Nipple-There kind of way.  That bit of skin is a perfect circle taken from my back.  The Captain and I debated her technique one night.  Did she free hand it with a scalpel?  Possible but tricky, though Leonardo Da Vinci would have managed it.  Or did she in fact, use a cookie cutter?  My money is on the latter.  This woman looks like she could bake a mean biscuit.  However, I am not left with a hole shaped scar on my back.  So there must have been trimmings?  Perhaps they save up the leftovers and make a coat.  Buffalo Bill could have had a field day.

The other slightly unusual feature of my perfect circle No Nipple Flap is that I disturbingly have a hairy back.  My No Nipple Flap is covered in the lightest dusting of soft, downy hair.  A bit  like velvet, it is.  Maybe it is as well I am about to be challenged in the hair department.  I could very well be the missing link that completes Darwin’s theory of evolution and frankly, just now, I could do without the publicity.  Besides, it turns out stroking the fur on one’s own fake nipple is not acceptable in any society.  Ever.

Full Time Job

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I am beginning to marvel at anyone with cancer who manages to hold down a job.  Since this all began, it became obvious early on that we were going to have to put my business on hold for the year.  Or at least, manage a very scaled down version.  As you know, the Captain has been taking jam making lessons.  Today he moved onto chutney.  With some success I might add.

However, even if I wanted to, I would struggle to fit in working.  During the next 7 days I have the following appointments:

  • Psychologist
  • Echocardiogram
  • Oncoplastic Surgeon, follow up
  • Pre chemo dental check up
  • Citizens Advice Bureau cancer appt – not entirely sure why I’ve got this, will report back
  • Pre Chemo talk
  • Wig Fitting
  • Complimentary Therapy Reflexology
  • Presentation on breast reconstruction – optional extra.  I was invited as my surgeon is speaking.

It is exhausting.  Apart from the reflexology.  Last session I fell asleep.  ‘You relaxed really well,’ said the therapist.  Understatement of the year.  I probably snored.

FEC-ing Sun!

*Updated 18th June – see bottom paragraph*

Beach Shade Lady Kid

One of the less unpleasant side effects of the chemo regime I will be subjected to, is an increase in sensitivity to sunlight.  I have it on good authority that factor 50 is the SPF to go for and much to my surprise, this does not actually mean white emulsion.  In fact, I am rather pleased that I have ended up with one of the Independent’s best suncream recommendations for 2016!

I have bought Neals Yard Organics Lemongrass Moisturising Sun Lotion SPF 50 in readiness for those days I am up to sitting in the garden.  I have a large hat too.  I wanted Neals Yard because they do not use chemicals in any of their products that can disrupt or cause overproduction of oestrogen.  This is especially important to me as my cancer was/is oestrogen receptor positive meaning oestrogen feeds it.  Suncreams are particularly good at including chemicals that do this so I am choosing to avoid such products as much as possible.  I am gradually working through my toiletries and sifting out those that include harmful ingredients.  Nothing like locking the stable door after the horse has bolted.

More information on Neals Yard is here but this is a summary of what they avoid when making their products:

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Update:

I am sorry to report that the Neals Yard Lemongrass Sun Lotion was something of a disaster.  Well, maybe this isn’t entirely fair as it worked brilliantly as sun protection and smelt fantastic.  However, everything, and I mean EVERYTHING that came into contact with it was stained a virulent yellow.  All suncreams stain a bit so the disclaimer on the packaging warning to keep out of contact with fabrics, did not unduly concern me.  Nothing could have prepared me for the amount of staining.  My lovely new (expensive) mastectomy swimsuit was ruined, so were several towels and some clothes.  It is fair to say that this product is not fit for purpose.  Unless you are a naturist.  With a fabric aversion.  In that case, it is the suncream for you.  In fairness to Neals Yard, I wrote and told them of my problems and they gave me a ‘good will’ payment of £75 which more than refunded the cost of my creams.  Since then I have ordered an SPF 30 from The Green People on the understanding that the jump from 30 to SPF 50 only affords a further 1% of sun protection.  Here’s hoping.