R.I.P. Bertie

Yesterday we said goodbye to our gorgeous boy, Bertie.  Surrounded by his loved ones, at home on his favourite bed and blanket he entered his final rest.

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We found Bertie at The Dogs Trust in Evesham.  He was sitting in his pen, looking absolutely miserable, surrounded by crazy barking dogs.  Our eyes met.

“Get me out of here,” he said.  “I can’t bear it.”

So I did and he came to live with us in Rugby.

His previous life was a mystery as he had been picked up wandering the mean streets of Birmingham sans collar, sans microchip.  Hence nothing was known of his past but Things 1 and 2 and I formed our own theory; based on his preferences for old men, buses, biscuits (terrible teeth), sofas, and on his loving gentle nature we think that he was owned and thoroughly spoilt by an elderly gentleman.  Maybe this gentleman had to go into hospital or maybe Bertie just wandered off one day.  We will never know.  But I like to think that Bertie has now found his previous owner and is snuggling with him on a celestial sofa eating the sugary biscuits that he was denied under our ownership.

Also mysterious was Bertie’s heritage.  To describe him as a cross breed does not sufficiently convey the complexity of his physical make up.  Stumpy Queen Anne terrier legs, the bushy tail of a red setter, german shepherd colouring, long corgi body and thick thick hair which has covered our house, car, clothes, food for the past four years.  He was our ‘stretch mongrel’.

Bertie treated our attempts to get him to fetch a ball or play with the contempt of a proper old dog but he did learn to walk on the lead and developed strong views about where he wanted to cross the road or which direction we should go.  He would dig his feet in and refuse to budge if we went the ‘wrong’ way.  He would raise a paw with an almost audible sigh if food was in sight.  Until he got too wobbly on his pins.  In the early days he evidenced a strong foraging instinct and we had to lift the bin each night.

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It took Bertie a few months to realise that this was his forever home and to settle.  He became the most loyal, loving, devoted old boy and would shadow me around the house.  He never did get the hang of stairs and would hang around the hall crying if I was upstairs for any length of time during the day.  He was my constant companion during the long period of illness.  His bed was next to my favourite sofa and his snoring and warm body helped to relax me when things were hard.  Bertie turned sleeping into an art form.

He adored the Things and they loved him back.Abi and dogs  In fact it was hard not to love Bertie and this past few days many people have turned up to bid farewell to him.  He was always polite and gentle, presenting his big head and velvety ears for a scratch.  I never knew him to growl or snap at anyone, animal or human.  Bonnie wasn’t always very nice to him, quicker and sharper she used to steal things from under his nose and hide his bone in the garden but he never held it against her.

Over time Bertie got wobbly on his little legs and used to tumble.  He slept more and enjoyed his walks less.  He had accidents and was sorry.  He was virtually deaf and quite blind.  All of this was fine and we saw it as the inevitable aging process.  He just needed loving care.  Then the anxiety began.  Once noted for his calm disposition he began to show signs of distress.  For long periods in the evening he couldn’t settle and would stagger around from room to room, bed to bed, asking to be let out and back in again over and over, panting and clearly looking for something or someone.  He ceased to recognise the Things and myself as special, as his pack.  He greeted us in the same way he would greet a stranger, politely but with no recognition.  I couldn’t calm him down or settle him, in fact stroking him seemed to upset him more.  The vet confirmed that he had dementia and was deteriorating rapidly.  She said that, like in humans, doggy dementia often takes the sufferer back to his younger self.  He may have been looking for his previous owner and home.  He was bewildered and lost.  It was a no-brainer.

It’s only one day and I miss his sturdy, long body and little legs and big head bumping into things, his nails scratching the floor as he pads around.  Bonnie and I keep looking at each other glumly.  There is a big Bertie-shaped hole in our lives.  We gave him a great four years, he had lovely walks, beach holidays, endless cuddles, good food, stability and security.  He was adored.

Rest in Peace, lovely Bertie.  Enjoy your sofa and your biscuits and your cuddles.  I bet you can run as fast as a spaniel now.  We love you.  We miss you.

 

 

 

Mastectomy (second and final)

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Next Monday I will go into hospital to have my second mastectomy. This will mark the beginning of the end of the period of my life dominated by cancer. Seventeen months, so far.

I seem to remember writing in an earlier blog about how cancer was like a huge balloon that filled my vision. Occasionally a crisis with someone important to me would squish the balloon and allow them into view but it soon expanded again. I was assured that over time the balloon would deflate and normal ‘stuff’ would come into view again. The balloon has deflated but it reinflates periodically, pumped up by visits to the oncologist, scans, pain (OMG! I have pain in my hip, it must be a secondary cancer), cancerversaries, other people’s cancer diagnoses etc.  And this.  Obviously.

The re-inflation of the balloon is fine. I have to go with it. A month or two ago I went through a phase of waking three or four times in the night, convinced that I had cancer cells growing somewhere. I googled survival rates for my type, grade and stage of cancer which is really stupid – I’ve already been caught out by the statistics. I read academic papers that were virtually incomprehensible.  I grilled the oncologist mercilessly.  I cried frequently. People told me that I should get more counselling. However, I was fairly certain that this was just a phase that I had to go through. I had dealt with so much physically and had been focussed on surviving and getting through the pain. This was my brain catching up.

I was right. I usually am. The phase passed. I feel cheerful which is much closer to my old self.

I keep meeting my old self. I thought she was a-gonner and I missed her. But she was there, all the time, just waiting for the crisis to pass. I have also realised that it’s very hard to feel mentally upbeat when you’re physically poorly. Yes, yes, I am sure that this is obvious but it wasn’t obvious to me. We should NEVER judge people for being grumpy or irritable because we just don’t know what that person is dealing with. For most of my readers pain is temporary and you can tolerate a lot in the knowledge that it will pass. Imagine if that pain was going to be with you for ever. For me, struggling with constant ‘discomfort’ in my arm, chest and shoulder is irritating and sometimes I just want to scream. I make a joke of my arm stretching and groaning because that’s my way of dealing with stuff. The worse the pain the more terrible my jokes. But it’s still pain. So please forgive me if I snap occasionally.

Anyway, I’m wandering off topic again. The mastectomy is what I want but what I never wanted. Why would anyone want to lose a pair of lovely jugs like mine? Lovely squishy, bouncy, soft breasts. I’m still chatting with left boob and we have had some nice cuddles. I hadn’t appreciated how warm my boobs kept me. My right side is just ribs and skin after the radical mastectomy. No fat, no muscle and it’s cold! I pile up the scarves and vests and wonder if there’s a market for chest warmers.  This fella has got it sussed.

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I have a list of things to do before Monday. Any mum will relate to these items:

  • Big shop
  • Cook meals for freezer
  • Sort out the microwave (it drops bits of metal and paint into the food which I’m fairly sure is not very good)
  • Laundry up to date
  • Write daily jobs from Monday for Thing Two (her list will include putting my socks on before she goes to school, lucky girl)
  • ALL Christmas presents bought, wrapped and labelled. (EEK!)
  • Get cash
  • Petrol in car (for Thing One when she comes home)

Then there’s the dog-owner items:

  • Get Bertie’s nails clipped
  • Order dog food and treats
  • Dog walking planned (I have six people who will be wholly responsible for mad springer spaniel exercising for a while)
  • Bonnie to friend with bedding, food, leads (for a week)
  • Bertie sorted (Bertie is old, very deaf, short-sighted and bonkers and gets very distressed if he has to leave the house. So people are coming to spend time with him and to meet his very particular needs. These include being let out in the garden six times in the space of one hour every evening…..)

Very far down the list are things relating to me:

  • Pack hospital bag (front opening pyjamas, slip on shoes, baggy knickers that are easy to pull up one-handed)
  • Find bags for drain (don’t ask)
  • Everything at waist height (for about a week I won’t be able to raise my arms nor bend over so I need clothes, food, crockery, phone charger, and TEA BAGS to be accessible)
  • Pick up prescription and sort painkillers
  • Range of constipation remedies (painkillers have side effects……)
  • Pillows and cushions EVERYWHERE
  • Haircut (my hair is turning into a grey afro)
  • Sort lifts to and from Coventry. (My excellent big sister and stalwart friends once again take up their supporting roles. They’re wonderful.)

I am plodding through the list and doing some fun things too. These fun things mostly involve friends taking me out for meals. Which is nice.

On Monday I will go into hospital at about 11am but probably won’t be operated on until early evening.  I am still last on the list due to my plague status. (C.Diff).  So think of me being hungry and very thirsty through the afternoon and waiting for the chop.  Prayers and love please.

Pollyanna Moment: I’m glad, glad, glad that this will all be over by the end of the year. Apart from a new nephew and Thing Two’s GCSE results, 2016 has been mostly horrid. 2017 has to be better.

Needle count: 174. Bone scan (results later), flu jab and fun with the phlebotomists for my pre-op tests. The pre-op was a giggle as I had to jump around a bit to get my blood pressure up to acceptable levels.

 

Cellulitis and The Return of the Mummy’s Curse

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‘Cellulitis’ must not be confused with ‘cellulite’; cellulite is the subject of many wobbly-bottomed celebrity photographs in the kind of magazines some women read on holiday. The discovery of cellulite is life-changing for a celebrity as she (it is always a woman) must then bring out a fitness DVD showing her transformation from normal curviness into the skull-faced, orange-skinned stringiness required by current standards of beauty.

Cellulitis is obviously much less serious. Granted, it is extremely painful, unsightly and unpleasant; it does bring flu symptoms and a raised temperature; it requires prompt treatment with antibiotics, often intravenously. It is the scourge of lymphedema sufferers. But no one is required to bring out a fitness DVD so we must be positive.

I had an attack of cellulitis recently. It started as a small patch of red skin in my inner elbow. The patch resembled Svalbard and my lymphedema nurse drew round it in pen. Modern medicine is very sophisticated.

“If it grows you need urgent antibiotics,” she told me.

Over the weekend Svalbard became Australia and a new peninsula stretched down towards my wrist. It was hot and it hurt. It really hurt. I was sweaty and shaky. So I had a fortnight on antibiotics and that sorted it out. More antibiotics. My body has had so many and they always upset my stomach. But the alternative is not acceptable. Australia would become South Africa, then Asia…. It had to be stopped.

Cellulitis is an infection of the deeper layers of the skin. Those of us with a damaged or depleted lymphatic system are prone to it as our bodies’ natural defences are compromised. It can often follow a small cut or insect bite, even an overenthusiastic manicure. I found no such break in the skin and my lymphedema nurse said that my cellulitis was probably due to a sore throat which, although minor, was enough to put my body under pressure. It’s nonsense, isn’t it?

What else is new in Ed-land? Well, I’m pleased with my swimming. I do twenty lengths three times a week; I try to walk 5,000 steps a day; I do physiotherapy three times a day – a series of stretches and then tugs on a band. I’m quite an athlete these days, albeit a wobbly-bottomed one. I am doing my best to get strong for my operation which is now supposed to happen on 5th December. The second mastectomy. Second and final as I only had two breasts. No more mastectomies for me. Yay! I had my pre-op last week and I’m good to go. My blood levels are better than they have been for two years. My amazing body continues to recover!

Another sign of recovery is The Return of the Mummy’s Curse. I haven’t been cursed since I started chemotherapy thirteen months ago. Chemotherapy shocked The Mummy’s Curse back into its tomb. But last week I was cursed again, rather surprisingly. It’s normal for chemotherapy to affect our bodies profoundly and no one could tell me if the withdrawal of the curse would be permanent.

“It varies.”

I am quite pleased to be cursed once more as it’s good for my bones to have some oestrogen knocking around. My bones have taken a bit of a battering from chemotherapy and radiotherapy and need all the help they can get.

Speaking of bones, I have a bone scan this week. I don’t like bone scans; there are too many needles (two for people with normal veins, around seven for people with tricky veins like mine) and too long waiting for the radiation to seep into the bones – up to four hours hanging around during which time I am not supposed to mix with children or pregnant women and have to use a radioactive toilet. The bone scan is required because I have a persistent pain in my left hip. It’s my own fault for mentioning the pain to the oncologist in a recent consultation in response to the question,

“Do you have any new pain?”

The old me would not have mentioned it. But of course things are different now and nothing is to be gained from not mentioning stuff.

Pollyanna moment: I’m glad, glad, glad that my mammogram was clear.  I’m glad, glad, glad that I will have had my op by the end of the year. 2017 is going to be better. I’m glad, glad, glad that I am getting stronger each day and able to do some normal things. Last week I even went to a party IN THE EVENING! OK, I only managed an hour, but it was still a party.

Needle count: 168 My veins are getting worse and worse and even the experienced phlebotomists need a few tries these days. What fun it is, having a blood test. How we laugh.

 

Mammogram

keep-calm-and-put-the-kettle-onOn Thursday I am having a mammogram and seeing my surgeon.  We will be discussing my second mastectomy, scheduled for 7 November.  This is all fine.  It’s what I want.  I’ve struggled through this long, hot, dreadful summer with one boob bobbing around in a lonely disorganised manner and I’ve had enough of it.  Whilst others have rejoiced in the sunshine I either sweated under scarves and cardigans draped over my craterous caved-in lumpy side or had to tolerate the stares.  And people do stare.  I haven’t quite worked out what to do with the starers.  Some women get t shirts made with challenging legends:

My other one tried to kill me

It’s rude to stare

Flat and Fabulous

Others approach people and offer to explain why they’re flat, aiming to educate and inform.  I’m English so I just pretend that it’s not happening.  It works for me.  I’ve started swimming again (hurrah!) and I’m so blind without my glasses that I can pretend that people aren’t staring.  Except for that man in the changing room who did such a comedy double take at my chest that I laughed.  Sometimes I wonder what the starers are thinking.

Poor woman.  She must have had a mastectomy.

or

She’s so brave, coming swimming when she looks like a freak.

or

That’s disgusting.  She shouldn’t be allowed in the swimming pool.  Or out of her house at all.

or

Why isn’t she wearing a prosthesis?  Does she want everyone to stare at her?

or more likely….

What’s for tea?  I hope it’s sausages. I must remember to post that letter on the way home..

It was Thing Two who got me swimming again.  We were on a beach in Wales and I’d managed to struggle into my ultra modest high necked tankini and skirted bottoms.  The French police would probably have arrested me for covering up too much and potentially concealing a Kalashnikov up the leg of my shorts, or a suicide vest.  (That’s not a suicide vest, officer….that’s my belly!)  Anyway, I looked up and down the beach.  Because it was gorgeous North Wales, there weren’t many people about.  A few.  I asked Thing Two for her opinion.  You can always rely on Thing Two to be honest and so I braced myself.

“I’m not going to lie to you,” she said, after inspecting me.  “You look like a woman with one breast.  But no one cares.  Get in the sea.”

So I did.  And I had the most amazing swim and cried with happiness.

I do try to get on with false boobs.  Honest I do.  Periodically I try Priscilla prosthesis but find her sweaty, sticky and jangling to the raw nerves and recovering skin of my chest.

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Priscilla is beautiful; properly positioned she looks and feels like a real breast. I’m always inviting people to give her a squeeze.  Friends, family, the postman….  Except she doesn’t feel like a real breast to me. She feels like a cold, solid lump of silicone stuffed down my chest.  I have such a crater that there’s a huge hole between her back and my chest wall.  I stuff it with silk scarves and consider taking Priscilla shoplifting.  I could fit a bag of peas down there easily.  I doubt that the shop assistants in Sainsbury’s would dare to challenge me to remove my breast.  Maybe they would.  Maybe it’s a common problem – people sneaking bottles of whisky into their prosthetic limb and tubs of taramasalata behind their phoney breasts.  It would be terrible if the taramasalata leaked though….

Then there’s the knitted knockers.  These are soft cotton boobs knitted with love by kind people.  They come in a box wrapped beautifully with a card wishing you the best with your treatment.  I cried when I received mine because the compassion that had gone into their knitting and wrapping was tangible.  But there’s a problem:  I want to get on with my knitted knocker but I just can’t.  It’s not heavy enough to hold its own in a bra straining to retain the remaining left boob.  The knitted knocker ends up under my chin.  It has been suggested that I add some ballast in the form of curtain weights or ball bearings but I don’t want to clank and clink.  And anything pressing on my chest feels like I am being brushed with stinging nettles.  So the knocker gets yanked out of the bra and flung across the room.  I am most definitely not knocking knitted knockers;  I know that many women find them much more comfortable and gentler on scarred irradiated skin than silicone.  I think that my problem is one of engineering and balance and I hope that when I have no boobs I may find them more tolerable.

Bras are tight uncomfortable things, especially when you’re big-boobed.  There is always that moment of the day when you take your bra off and your whole body heaves a sigh of relief. AAAAAAAHHHH!  Keeping left boob under control is a daily challenge for me; whatever I wear – bras, camis, or cropped tops I get swelling and pain on the right side where the elastic digs in.  This undoubtedly interfered with healing from the first mastectomy and the radiation burns that came later.  It doesn’t help with my lymphedema either.  So when left boob is gone I will have a period of healing where I don’t have to wear a bra.  I wonder if I’ll ever wear one again.

This blog post was supposed to be about my mammogram on Thursday and I have digressed a bit.  Apologies, dear reader.  I have to confess that I am scared £&*tless about the mammogram.  For the first time since chemotherapy I have mouth ulcers; my stomach keeps doing flip flops; I’m not sleeping well.  I know that this is silly.  I know that the chance of there being anything sinister going on in left boob is remote.  My intelligent brain knows this.  So why do I have ulcers and nightmares and feel sick?  Why am I convinced that my left breast harbours murderous intent?  We have a very difficult relationship and some strange conversations:

“Look, you’re just being ridiculous.  I haven’t done anything wrong.”

“I know, but you being there….you’re just so heavy and difficult to deal with.”

“It’s hard for me too since you took my pal away.  I’m lonely and there’s no one to snuggle up to.”

“She nearly killed me!”

“It wasn’t her fault.  She tried to tell you but you were looking in all the wrong places.  You don’t have to chop me off though.  I promise to be good.”

“I can’t trust you.  I’m sorry, but you’ve got to go.”

“But I wouldn’t hurt you.  I’ve been with you for decades.  I’ve been such an asset.  I got you all that attention, I was there for all the fun times, I nursed your babies, I propped up your books, kept you warm….”

“Sorry, but my mind is made up.  It’s just too hard trying to manage you, and worrying about what you might do to me.”

“So mean!”

As you can see, I’m a bit unhinged at the moment.  Bear with me.

Pollyanna Moment:  I’m glad, glad, glad to be swimming again, even if I am very slow and frequently overtaken by the elderly and infirm.

Needle Count: 165

 

Crazy Mad Cancer Lady

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Crazy Mad Cancer Lady

Crazy Mad Cancer Lady wants to be normal, but she’s rubbish at normal.

She wants things to be like they were, when you could complain about your head cold without apologising to her because she’s had so much worse.

She wants you to forget her cancer but rages inside when you complain about your breasts being too big or sweaty or the wrong shape.

Crazy Mad Cancer Lady feels that she is not a very good friend anymore.

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Crazy Mad Cancer Lady has unfathomable depths of guilt because of what she has put her children through.

Crazy Mad Cancer Lady would buy her children cars and horses and unicorns and designer clothes to compensate if she had the money.   But she doesn’t.

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Crazy Mad Cancer Lady knows her history, her treatment and her prognosis. She can trot out a list of drugs and medical events like reciting a nursery rhyme.

She has sussed out the competent from the incompetent and won’t let Miss Shaky Hands near her blown veins with that huge needle.

She knows how to get the best parking spaces at the hospital and where the cleanest toilets are.

Crazy Mad Cancer Lady spends so much time at the hospital that her tablet has labelled it her ‘place of work’ and calculates her commuting time each day.

She greets the nurses by first name. She brings them homemade cakes.

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Crazy Mad Cancer Lady is sorry that your friend died a slow and painful death from cancer but doesn’t find your story uplifting or helpful.

She doesn’t need informing about every new diagnosis either. She doesn’t want anyone to have cancer but mostly she has no space in her head, nor energy to care about people she’s never met.

Crazy Mad Cancer Lady considers inflicting bodily harm on people who tell her that future generations will consider mastectomies brutal and unnecessary.

She doesn’t want to hear about that ground breaking new therapy being pioneered in Norway. It’s too late for her.

She doesn’t want to eat bowls of turmeric and garlic just because you read about it on the internet.

Crazy Mad Cancer Lady is baffled when you tell her about that ‘inspirational’ someone in your office who managed to work full-time through their chemotherapy, look gorgeous, run a marathon, and ‘stay positive’ all the way through. She wonders what your point is. She imagines her hands around your throat, choking the life out of you.

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Crazy Mad Cancer Lady has chosen not to put her body through the trauma of reconstruction.  She doesn’t understand why this decision is questioned by so many.  She considers referring them to google images.

Crazy Mad Cancer Lady thinks her silicone prosthesis is amazing. But it makes her sweat, and the jangling from the raw nerves on her chest means she cannot tolerate it for long.

It stays in its box.

Crazy Mad Cancer Lady says she doesn’t care when people stare at her flat chest. But she does care.

She feels that every public event, every walk, every shopping trip, requires gargantuan amounts of courage and preparation and the careful draping of scarves over the offending crater.

She has not yet managed the swimming pool.

Crazy Mad Cancer Lady misses her breast so much that it’s like a physical pain. In bed she fills the gap on her chest with a scrunched-up pillow. But it’s not the same.

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Crazy Mad Cancer Lady wants to have fun but lives with constant pain. Her pain makes her snappy and irritable.

She loves her painkillers but doesn’t love the gaps in her memory they create.

Crazy Mad Cancer Lady is scared that the pain will always be there.

What if this is as good as it gets?

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Crazy Mad Cancer Lady loves to laugh and finds humour in dark and inappropriate places.

She likes to dance and sing and hug her children.

She can be very embarrassing.

Sometimes she needs to cry or be sad or quiet.

If you tell Crazy Mad Cancer Lady to ‘stay positive’ or ‘be strong’ she may punch you in the nose.

Crazy Mad Cancer Lady is amazed by her own strength but wonders how much more she can take.

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Crazy Mad Cancer Lady hates having to ask for help, hates being a burden to others.

She adores those precious people who have been there for her and her children through this terrible time.  Who turn up with homemade meals for the freezer and a willingness to walk the spaniel.  Who send cards and presents and words of encouragement.

She is amazed by their kindness, their tact, their persistence, their loyalty, their love.

Crazy Mad Cancer Lady harbours anger and resentment against former friends who have not been around.

She is deeply hurt by those who have done little when she expected more.

Crazy Mad Cancer Lady doesn’t know what to do with those feelings.

She wants to phone them up and yell “Where the f&£k have you been?” but she doesn’t.

It is possible that people sense her anger.

…………………………………………………………………………………………………….

Crazy Mad Cancer Lady wants to live, but believes she will die.

She hears her oncologist’s words and nods, but she thinks that this cancer is going to kill her. If not now then next year, or in five years, or ten.

Crazy Mad Cancer Lady wonders if she will ever stop thinking about secondary cancers.

Does that headache mean a brain tumour? Is her joint pain bone cancer?

She’s not frightened of death but of the process of dying. Most of all she fears pain, loss of independence, loss of continence, being a total pain in the arse to her loved ones.

Crazy Mad Cancer Lady clears out her cupboards so her children don’t have to. She fills bags with clothes, and boxes with books for the charity shops.

She plans her funeral and chooses her favourite hymns and readings. She wants her funeral to be a great event with much weeping and wailing. She wants everyone to come from far and wide. She hopes people will remember her, always. But she knows that people will move on and get over it.

Crazy Mad Cancer Lady cries sometimes, imagining her own funeral.

She has had a good response to treatment, has an excellent prognosis and knows that thinking about death means she is a daft, morbid bat.

Crazy Mad Cancer Lady is a daft, morbid bat.

………………………………………………………………………………………………

Crazy Mad Cancer Lady thinks that she will never get over what chemotherapy, surgery and radiotherapy have done to her body and her soul. She thinks that she is fundamentally changed.

She tries to pass for normal but slips up often.

There is the burden of knowing that she should be grateful for her excellent treatment, love her scars, live every day as if it is her last.

But why should she feel grateful?  She never wanted this.

She finds her scars ugly.  She hates the mirror.

And no one can live like it’s the last day every day.

She misses her old life when she took stuff for granted.

Crazy Mad Cancer Lady doesn’t want to look like a middle-aged man with a beer belly. She wants to be luscious and curvy and big-boobed again.

She smiles when you tell her she’s beautiful or that she looks nice. But she doesn’t believe you.

She wants to be so much more than someone who has had cancer. She thinks that she used to be someone interesting, before all this nonsense hit her in the face.

Crazy Mad Cancer Lady can’t seem to find her old pre-cancer self, but she keeps on looking.

 

Nymphs with lymphs

keep-calm-and-put-the-kettle-onI once made my plastic surgeon laugh so much that I thought she was going to have a heart attack and I might have to press the crash button. (Secretly I long to do this.)

I had asked her if removing the lymph nodes under my arm was like getting Christmas tree lights out of their box and whether they would come out in a similarly tangled state. Or whether it was like hauling a swordfish line into the stern of a fishing boat. I imagined some hefty fellows in arran jumpers hauling them in, the poor creatures hanging from the line. They (the fishermen, not the swordfish) would be singing sea shanties.

“We will rid her of cancer so pull on this line

Heave ho me hearties

Away with these lymph nodes and soon she’ll be fine

Singing heave and ho and blow the man down

Yes, I know I was revealing my ignorance but I had seen diagrams of the lymphatic system and the nodes looked like Christmas lights on a string.

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And I would ask you, my lovely and valued reader, how much you know about your own lymphatic system. Where is it? What does it do? What happens if you lose some lymph nodes? How is it treated? Can it be cured?

See? You don’t know either do you? Unless you’re a cancerous lady of the breast, then you probably do.

When my PS had picked herself up off the floor she explained that removing the lymph nodes was more like finding a number of small clusters of grapes in a tub of butter. It would be very tricky and would involve her hacking through a whole pile of muscles and nerves, probably leaving me with some ‘discomfort’ and ‘issues’ with the underarm area, shoulder, and right arm.

I didn’t particularly like being called a ‘tub of butter’. It reminded me of the tub of lard which once replaced Roy Hattersley on the satirical news quiz – Have I Got News for You. However, I managed to get it together to ask specifically what the ‘issues’ were and what kind of ‘discomfort’.

My oncologist had already warned me that it was the removal of my lymph nodes that would be ‘radical and life changing.’ Much more of a big deal than the mastectomy. (Because removing a breast is a piece of cake, as we know. Nothing radical or life changing about that!)

Anyway, guess what my PS said.

“It varies.”

Ho hum.

Let me enlighten you a little about our lymphatic system.

Our bodies have a number of systems – digestive, circulatory, nervous etc. We also have something called a lymphatic system which gets on with its own business without us paying it any attention, until something happens to mess it up. Like cancer.

The lymphatic system consists of a whole body network of glands and small vessels which transport straw-coloured fluid to the lymph nodes where it is filtered. This fluid is called ‘lymph’ and plays an important role in fighting infection. The lymph nodes filter out bacteria and can even destroy cancer cells. It is our lymphatic system that enables our bodies to deal with waste, including bacteria and infection from damage like insect bites and small scratches. I bet you didn’t know that, did you? Unless you paid attention in biology (I didn’t) or are medically trained.

My lymphatic system was affected by my cancer in two ways: firstly, the huge and fast-growing tumour virtually destroyed the lymphatic system in my right breast. This left me with lumpy, dimpled skin (often referred to as ‘peau d’orange’ due to its similarity to orange peel), redness and swelling in the breast. It didn’t matter as the breast was destined to go. Secondly, an MRI scan and then a particularly ‘uncomfortable’ and deep needle biopsy identified cancer in the lymph nodes high in my right shoulder; this meant that I had to have an axillary clearance at the same time as the mastectomy. This total clearance removed all of the lymph nodes in that area, from armpit to neck. Some people have one or two removed but I had the whole lot.

This left me at a high risk of developing lymphoedema in the right arm. Lymphoedema is swelling caused by a build-up of lymph fluid in the surface tissues of the body. The lymph nodes and vessels that have been removed cannot be replaced so the lymphatic drainage routes are reduced. In my case it would affect the arm, hand and fingers of my right arm, possibly the chest too, causing swelling. Lymphoedema can be very serious if not treated properly although nowadays the health professionals are much better at spotting it and dealing with it early.  We don’t see many people with elephant arms any more do we, thank God.

Like many of these medical things, lymphoedema is a bit random. Some people develop it immediately after surgery. In other people it can develop months or even years later, or not at all. The docs are honest in saying that they don’t really understand why this is. They do know that lymphoedema can be triggered by something; a friend of a friend forgot to be careful about her affected side, (having been symptom-free for years), and picked up a heavy bag. This triggered lymphoedema in her arm which she now has for life.

That’s the major downer: once lymphoedema has been triggered you have it for life. There is no cure. It is a condition that you have to manage.

Other things that can trigger lymphoedema or exacerbate an existing condition include:

  • Radiotherapy, infections, hot baths, saunas, sunlight, massages, acupuncture, skin contact with snow or ice, quick changes in temperature, air travel, lifting stuff, pushing stuff, detergents, hot plates, insect bites, scratches, grazes, injections, blood tests, blood pressure taking, manicures, watches, rings, carrying a bag on right shoulder, picking up children

For three months I did my physiotherapy exercises religiously. I rested the arm raised with wrist higher than elbow and elbow higher than shoulder. I pumped my fist. I avoided all of the things above (except for mowing the grass which I just couldn’t resist.) I had a lot of ‘issues’ with my right arm: burning, pain, squeezing, pins and needles, numbness. This made it easy to remember to treat it with care. I was pleased that I was managing not to develop lymphoedema. I was smug.

Then I had that bloody radiotherapy. The combination of burning, swelling of the chest wall, and two infections triggered lymphoedema. The radiographers spotted it one day when they were poking and prodding me into position for that day’s dose.

“Your wrist is swollen,” one of them said. “And your fingers. You should see the lymphoedema nurse. Today.”

So I did. And she confirmed it.

I now have lymphoedema and I will have it for life.

I’m pretty fed up about this. I’m sure you understand.

People learn to live with lymphoedema and to manage the condition.  Things that help include:

  • wearing a compression sleeve and glove, or a compression bra and vest. These sexy beige elasticated items are designed to prevent further swelling and to encourage lymph fluid to drain away. They’re ridiculously tight and hot and while you are experiencing swelling they should only be removed in bed (although there always comes a point in the afternoon or evening where I get a bit frantic with the heat and tightness, drag mine off and fling it across the room). In my helpful leaflet there are pages and pages explaining how to put them on and remove them. I won’t bore you! I will just say that you can’t just tug them on and off. These garments have to be reassessed every few months to check they’re still tight enough. In less than a month I’ve gone from a size 5 to a size 3.sleeve
  • Manual lymphatic drainage stimulates lymph fluid to move away from areas that it has collected. It is slow and rhythmic, and very gentle. You have to start at the shoulder and make some space for fluid, then work your way down. When drying yourself with a towel or applying moisturiser you must also follow this pattern. Shoulder, upper arm, elbow, lower arm, wrist, hand.
  • Simple lymphatic drainage which involves stimulating the lymphatic system in parts close to the affected area to encourage the lymph fluid to drain away. I haven’t done this yet but I will ask someone to teach me.
  • Gentle and controlled exercises. Swimming is great for lymphoedema and I’m intending to return to it as soon as I stop looking like something out of a John Carpenter film and the burned bits of me stop falling off. I may be one of those lop-sided crawlers in the slow lane but never mind! Walking is also good so long as I swing my right arm and pump my fist like some demented soldier on acid. If I don’t I get sausage fingers.
  • Not getting too porky as this puts extra strain on the lymphatic system
  • Raising the arm regularly to encourage lymph drainage. I do this all the time. My arm is actually most comfortable when raised vertically over my head. I am always hailing taxis or asking for permission to leave the room. I am informed that I am ‘embarrassing’ by Thing Two. It’s my revenge for her shouting “I am satan’s child” when we attended a service in St Paul’s Cathedral (where my godson was a chorister) a few years ago.
  • Attention to skincare – using mild soap gently and moisturising every evening. Shoulder, upper arm, elbow etc etc.
  • Wearing thick and long protective gloves all the time when doing housework and gardening to protect hands and arms from harsh detergents and cuts. Even minor scratches need immediate cleaning and might need an urgent trip to GP for antibiotics.
  • Using oven gloves, even when dishes are only warm.
  • Wearing SPF30 in the sun and keeping right arm plus chest and shoulder out of direct sunlight.
  • Using pain relief as required

Are you bored? I am bored. This is all really really tedious and unsexy and chronic and long term and just dull, dull, DULL! I hate it. I particularly hate that doing anything makes my fingers swell up like fat sausages. I can’t lose myself in my writing anymore since I have to keep stopping to do exercises and then sit with arm raised over my head.

But….. I am alive. Cancer in the lymphatic system is a bit of a bugger as it can use the system to spread around the body; it’s great that mine was identified and removed. Hurrah for the NHS!

So I have to stop moaning and just suck it up, don’t I?

Pollyanna Moment: I saw my lymphoedema nurse yesterday and we agreed that I’m doing well, keeping it under control. She gave me the go ahead to have a warm bath. Warm, not hot. So last night I had the first bath since my mastectomy on 21st March. It was a bit too cool for my liking but it was a bath and I loved it!

Needle Count: 160. Oh my. Heart scan last Friday and some pretty gruesome ‘hunt the vein’ games culminating in two cannulas in my wrist. I still have a lovely bruise.

 


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Let the sun shine through

galapagos sealYesterday one of my friends offered to club me to death like a seal pup. She’s a newish cancerous friend and I already love her very much. We share a dark humour and nothing is off limits – suffering, darkness, despair, our desire to inflict pain and death on certain persons, (yesterday it was her tai chi instructor who’d suggested that her cancer had arisen from unresolved relationship issues with her mother, possibly in a past life) and we laugh too; when we’re together we guffaw a lot and when we’re apart her texts often make me laugh out loud. Yesterday I was texting her that my body hair is now similar to that of a silverback mountain gorilla. I was also updating her about my pain, hence the offer to end it all for me.

I informed her that I’m not ready for any kind of clubbing, whether it be of the nightclub variety or the nasty seal pup kind. The pain I was experiencing was very intense but I had worse in January when I had that awful bone and joint pain and couldn’t speak or move for a few days. When it’s really bad I just shut down completely. This time I’ve been able to speak. Yay!

The pain is from radiotherapy. Remember that I blogged about this being like sunburn and a bit tiring. Ho Ho Ho. Remider to self – don’t anticipate what things will be like. Wait and see!

It’s two weeks since the final radiotherapy session and I am still having almost daily medical attention due to a second infection and unusually bad burning. My chest is a smorgasbord of colours and textures – grey crispy bits, white peely bits, scarlet burning bits, yellow bubbly wet bits. And in the middle, just under my scar, a huge raw blister. Sorry. Not nice for you reading this. But worse for me.

The pain has been overwhelming. Have you ever burnt your finger so badly that it was scarlet, skin broken and oozing wetness? Imagine that over half of your chest and under the arm. I am on steroids, a third week of antibiotics, max dose paracetamol and max dose codeine. In the hour before my painkillers are due I sweat and grind my teeth. This level of pain makes me a bit crazy and apparently I am just gabbling rubbish. How anyone can tell the difference I’m not sure.

I’m still swaddled in thick dressings from ribs to collarbone. I’m still changing them three times a day.  Yesterday the Tissue Viability nurse decided to switch me to a new type of dressing; these new ones are soaked in paraffin and now I stink like a garage forecourt. Or a camping stove. Nice.

I can’t help feeling that I’ve lost some of my allure.

I have a favourite hymn that has kept me alive and hoping through the darkest days. Great is Thy Faithfulness. There’s this one line:

“Strength for today, and bright hope for tomorrow”

These eight words have been repeated like a mantra probably thousands of times within the walls of my house. It got me through the early days after diagnosis when “tomorrow” looked uncertain. It helped me through chemotherapy’s appalling side effects, through pain, through distress and periods of anxiety, through loss of independence and loss of self. And now it’s easing my way through this radiotherapy. Because if I can get through today, tomorrow might be better. If not tomorrow, then tomorrow’s tomorrow. One day it will be better.

Hope for me is a tiny circle of pink skin in the centre of my chest. It’s about the size of a pound coin. The nurse drew my attention to it yesterday.

“That is your hope,” she said. I squinted down and identified the pinkness.

She explained that with burns like mine the healing begins in the centre and spreads outwards. This little circle of pink was new, healed skin. Every day it would increase in size. It would do this slowly because I’m exhausted and weak and full of infection and my bloods are low, but nevertheless, it would increase.

This morning the pink disc had increased, definitely. It’s like the sun peeping through black rainclouds. I’m focussing on that little bit of pink. And the paraffin is easing the pain. I can sit at my computer and type.

Strength for today and bright hope for tomorrow.

Pollyanna moment: I’m glad, glad, glad that Thing Two has finally finished her nasty GCSEs and that she had a splendiferous prom. Thing One has also finished Uni exams and is home (mostly). My Things are amazing, strong girls who’ve kept their focus and worked really hard this year, despite all the medical nonsense going on here. I’m so proud of them. Cluck cluck.

Needle Count: 155

 

 

Wrecking Ball

keep-calm-and-put-the-kettle-onStop.  I want it all to stop now.  I’ve had enough.  I started radiotherapy on 25th May.  Daily trips to University Hospital in Coventry.  After four sessions I developed an infection along the scar.  My “beautiful scar” now looks like the dogs have been at it.  I have a huge swelling under my arm and along my chest which pulls and pulls on my skin.  My range of movement is shrinking as everything tightens under my arm and round my shoulder.  My daily physiotherapy is becoming more painful.  The redness and inflammation is now moving down my ribs to my stomach.  I am burning hot, my face flushed like I’ve been in a sauna, yet my temperature is persistently below normal.  Maybe I am part zombie.  I am seeing the Tissue Viability Nurse every day.  She bleeped the doctor during my first visit to her.  Quote from doctor when he saw my chest:

“Oh my God!”

This is not encouraging Mr Doctor.  What you should have said is the following:

“This if fine.  No problem.  I’ve seen this before and we’ll soon have you fixed.”

As usual I sat there like a piece of meat while they prodded and poked at my hollow chest and decided what to do with me.

So I have two weeks of antiobiotics to take four times a day – two hours after meals and one hour before.  (My brain is so addled that I had to draw a clock face to work that out.)  I have huge dressings covering my whole right chest which I must change three times a day.  These are held on by a surgical vest.  I can’t wear my prosthesis, obviously, so I am Mrs Monoboob.  Everyone tells me this doesn’t matter.  It matters to me.  I am a freak.  A lop-sided, ugly freak.  I can’t sleep.  I’m sore, hot (yet not hot) and exhausted.  I’m worried about the long term effects.  It’s not that I loved my scar and concave chest before, but at least they were tidy and healing.

I have eight sessions to go.  Each radiotherapy session will impact on the state of my skin.  They don’t stop, they keep going because it can take weeks to recover from this and they can’t break for that long. That’s what I’m told.

I’ve been here before.  Getting through the days an hour at a time.   I suppose I can do it again.  I’ve wanted it to stop before, yet I’ve managed to keep going.

Every time I struggle to my feet and start to walk, start to pick up the pieces of my life, something new comes along to bowl me over.  This is my personal experience of cancer treatment: a seemingly endless series of wrecking balls hurling at you, knocking you down, leaving you breathless, shocked, and nursing a whole new set of injuries to body and mind.

Polyanna moment:  I’m glad that I have such amazing friends who are, yet again, helping me out with dogs, shopping, lifts.  Apparently my brief few weeks of joyful independence are over for the time being.  I’m glad that Thing Two is plodding calmly through her GCSEs.  I’m holding myself together for her as best I can.  She really doesn’t need a flaky mother at the moment.

Needle Count: 150

Wobbles, walls and weirdness

IMG_20160419_173605Wobbles, walls and weirdness

Weirdness

Removing my false breast during the film at our local cineworld might not be the weirdest thing I’ve ever done. There are are many other incidents that top it. However, it was a first for me. Sitting through a film like a proper grown up is a bit beyond me – I am like a child with ADHD and tourettes. We chose seats where I could stretch my right arm to alleviate pain and stiffness in my shoulder. I sat with my arm up the wall for most of the film occasionally stretching it over my head and pulling on my elbow with the other hand. This stretches my damaged underarm bits which are prone to seizing up if neglected.   I also pumped my fist from time to time to encourage lymphatic drainage and prevent swelling. (Everything makes my right arm swell up, even walking the dogs with both leads held in the left hand makes my right hand and wrist swell.)

Are you starting to feel a bit sorry for the people sitting behind me?

Then there was the wind. My digestive system is still an unhappy and rather flatulent bunny and definitely hasn’t recovered properly from chemo. Everything makes me windy and many different foods and drugs give me diarrhoea. I trapped my wind firmly inside during the film and so made some rather odd creaky noises. Afterwards I jet-propelled myself in the direction of the loos as quickly as possible.

Then there was the false breast. I am still wearing my ‘softie’ which I was given after surgery. This is just stuffing inside a cotton pouch. There’s no weight or substance to it, just puffiness. After surgery I needed to heal and so it was important that there was no pressure on my chest. It’s so light that during the day it travels up my chest towards my chin and the other (real) breast heads south, yanking the bra with it. I’m always tugging on it, pulling it back into place. Think Les Dawson in drag. He’s my role model.

It’s hot and sweaty under my softie. I get fed up with it and yank it out regularly. Yanking it out means feeding it out of the special pocket in my mastectomy bras through a very small opening. I grunt and huff and puff with the effort and when it finally pulls free it usually flies across the room. In the cinema I managed to hang on to it but it did come out at some speed. This made excellent big sister and me get the giggles.

It’s surprising we weren’t thrown out.

Walls

I don’t have a right breast anymore. I have a chest and a chest wall. The docs keep talking about my chest wall. I’m sure I didn’t have a chest wall before. Now I do. I met a cancerous friend for coffee the other day and we agreed that my chest wall is not an attractive dry stone wall, nor a tidy brick wall, nor a sun dappled limestone affair; rather it is a crappy stud wall erected in his home by a tired builder whose wife has been asking him to do it for about a decade. (As men always say: “If I say I’ll do it I’ll do it! There’s no need to keep reminding me every six months.)

The ravages of chemotherapy, and the pending radiotherapy will leave me with papier-mache bones. Like one of those horror films you will be able to put your hand through my ribs and pull out my right lung, should you wish to do so. I hope that you won’t. How we laughed….

Wobbles

I am a bit wobbly these days. Tears are never far away. Sometimes I miss my breast so much that it’s a kind of ache inside. Grieving, I suppose. Grieving for my breast, my digestive system and pain-free joints and bones, for my former life when I didn’t think about my health all the time.  It’s fine, all normal, all to be expected.  What most of you see is me being upbeat, laughing, joking about my situation. Because that’s what I show you don’t assume that there aren’t tears and sadness and pain too. There are.

So, what’s next? I’m still waiting for a start date for radiotherapy. The seroma delayed that. In the meantime I’m still busy with hospital appointments; so far this month I’ve had physiotherapy, breast clinic, blood test, day surgery, ct scan, radiotherapy planning and I’ve seen my GP for the first time since September. Tomorrow I will be fitted for a new silicone prosthesis at University Hospital in Coventry in the morning and have a meeting at St Cross hospital in Rugby in the afternoon about genetic testing. Next week I have physiotherapy in UHCW, counselling in UHCW and a trip to the chronic fatigue clinic in Nuneaton (remember them?). The week after? Another blood test then I’m seeing the Prof to review progress. My radiotherapy could start any day; that will involve fifteen trips to UHCW over three weeks. It’s a full time job this cancer business, and can be quite exhausting. Thing Two started GCSEs last Monday and I’m attempting to actually care for her during this period. Poor Thing Two has had very little in the way of regular meals or proper mothering over the last nine months. All of this means that I’m pretty exhausted and sofa time is on the up.

Pollyanna Moment: Going to the cinema, having coffee with friends, helping Thing Two with her revision. These are wonderful things to do and I’m glad, glad, glad. I also have to mention my excellent GP here. He’d booked a day off then saw me on his list so came into the surgery just for my appointment. We talked about current pain management and long term things that I am likely to need his support with once my treatment finishes in November. He’s a human being who gives me time, listens and respects my choices (except my refusal to call ambulances which he finds a bit stupid.)

Needle Count: 148. Today was Herceptin which is a HUGE injection and takes up to ten minutes to inject into my thigh. And it stings! I might have mentioned that before….. My lovely fluffy friend did the appointment with me, making it much more fun. She’s a hormone cancer so gets ten years on tamoxifen whilst I am a protein cancer that gets a year of Herceptin injections.