10 OCTOBER 2010
Catching up on my RSS feeds yesterday evening, I noticed an unusual flurry of posts from the blog Ramblings of a Bad Fairy.
The Bad Fairy (BF) started her blog in March this year. She had been diagnosed in June 2009 with secondary breast cancer in her liver. That was when she first found out that she had breast cancer. There were also possible tumours on her lungs. She was 40.
She was immediately put on quite intensive treatment, including weekly chemotherapy to reduce her tumours.
She wrote about the positives of hair loss, soon followed by how she was lucky to have the opportunity to look at her life and appreciate all the good things in it. And then she described how she and her husband told their children, taking them to the hospital to meet the nurses and see where she would get treated, so that they would know where she was when she was away.
And then her writing became very special, such as when she lost her bubble:
All I want is …
…my bubble back!
It’s gone. Don’t know where but I wish it would come back. Maybe it hasn’t gone completely and is just deflated and sulking under the sofa or something. But I want it back please.
It’s a very useful bubble. Some days it’s a bouncy hopper type bubble and we just bound through life together. Other days it becomes lots of little bubbles that fizz around and keep me laughing. Occasionally my bubble acts as a cushion and takes the edge of the not so nice stuff that happens.
The one I like the most is the gentle bubble bit. Not over the top and not always noticeable to others, the little bubbly bits that are me and are just accepted as me. The ones that help me chatter cheerfully, that make me chuckle about silly things. The bubble that stops me sitting in a corner with a blanket over my head wishing this merry-go-round would stop and I could get off.
So if you see a stray bubble with my name on, please return it. In the mean time I’ve added a bubble to my wish list in the hope that someone might have a new one for me ….. failing that a puncture repair kit would do just in case it is sulking under the sofa after a run in with the resident house cat!
It was very telling how serious things were when she blogged that her breast cancer was rarely mentioned, that the focus of concern was her liver.
And then her posts changed and were less about her treatment.
(1 April 2010)
Aren’t rainbows the most beautiful, awesome natural creations? I still see them through the eyes of a child and feel all tingly and amazed whenever I spy one. I’ve no idea if my reaction is because of their magnificent yet simple colours, a fascination with the power of nature or a wish to hold on to innocent childhood fantasies of Leprechauns leaving crocks of gold at their ends! Whatever it might be, I stop and stare with wonder at them all. Luckily for me we seem to have picked an ideal rainbow spotting area in which to live. Since moving here I’ve seen more rainbows than ever, included double rainbows, something I’d never witnessed before and I never get bored of gazing at them.
So, rainbows … I know a secret. Leprechauns were only ever taking cheeky advantage of something created by fairy magic (ok … and a bit of science and nature!). Bad Fairies have a special affinity to rainbows. Many moons ago Bad Fairies were punished for minor infringements of fairy rules with a fairy ASBO. This resulted in pots of paints and brushes being issued and the instruction to repaint any fading rainbow seen. Now being Bad Fairies following explicit instructions can be very trying and does go against the grain somewhat. So they improvised. Splash the colours by all means but ladders and scaffold (elf n safety at it’s best!)? No chance! The best way to paint a rainbow is to scramble up one in the most ungainly way possible, attach a sodden paintbrush to a belt around your waist and slide down yelling “Wheeeeeeeeeeeeeeeeee” at the top of your voice! Hey Presto, great fun and leaves a rather haphazard stripe of colour in your wake ….job done!
When my time comes and I’m not here to ramble, I shall be sliding down rainbows. No star in the night sky for me, nor cold stone in the ground. Rainbow sliding’s where I’ll be! Bad fairies are good at hiding, but one day if you keep looking you might catch a glimpse of a paint covered, scruffy little fairy out of the corner of your eye, riding the rainbows with a massive grin on her face!
She asked how to label her new free-flowing tears of gratitude:
I’ve always cried, it’s not a new thing. Films, books, songs have all been known to set me off. The sort of crying that involves a few tears meandering slowly and discreetly down a cheek.
But something has changed. My emotions are more free-flowing and more open than ever before. I haven’t got time to waste bottling things up so I’m less guarded, I can’t think of a better way to describe it.
These tears are a whole new experience. They’re not tears for me or indeed anyone else, they’re not tears of sadness, frustration or even anger. They’re tears brought about by the kindness and thoughtfulness of others towards me, including strangers. That sounds awful doesn’t it? You’d think no one had ever been kind to me before! They have, but I’ve never been so touched emotionally by it, or at least not to the extent that I bawl my eyes out and turn myself into a soggy faced, unable to talk, crumpled heap for five minutes at a time! As you can see it passes quickly but it is unbelievably intense whilst it lasts and usually happens totally out of the blue.
She wrote about how her thoughts seemed overloaded:
Hard hats and …
(6 June 2010)
…steel toecaps required!
AAAAAAARRRRRRRRRRRRRGGGGGGGGGGGGGHHHHH. Hmm, that feels a bit better.
Someone has upended the special storage boxes in my head. The ones that I file things away in until I’m ready to deal with them. I’ve gone back over the past few weeks and can’t recall doing any spectacular gymnastics or other twizzly stuff that might have inadvertently scattered their contents everywhere, so why have they all got muddled up?
It’s very frustrating. The boxes were doing a really good job of keeping my thoughts and feelings in their place and now I’ve got to start again putting it all away. Maybe I’ve overloaded some of them and they just burst? Actually, if I’m honest, I’ve probably got lazy and just been cramming things in, sitting on the lids in the hope that they’d hold together.
Now there’s no other option than to start the big clean up …. in reinforced boxes!
The Anger Box – anger at this stupid disease.
The Guilt Box – feelings of guilt because of how it affects everyone around me.
The Sadness Box – sadness at the shadows cancer casts over so many lives.
The Frustration Box – frustration with everything …when the mood takes me.
The Scared Box – this new life is scary.
On a brighter note, when the above boxes are sorted then I can indulge in dipping into the happier boxes. The memory box, the laughter box, the Mr Bad Fairy box, the Junior Bad Fairy box, the embarrassing moment box, the friends box and the giggle ‘til you cry box.
Wish me luck!
From the weekly chemotherapy, she’d lost her hair, nails and was losing her teeth. In August, she found what was called a “tumour deposit” on her skin.
At the end of August, she had to go into hospital to have a drain in her abdomen fitted. Her description of what it was like to stay overnight on an oncology ward has stayed with me ever since:
My newly found dislike of hospital is nothing to do with the staff or the care they give, it’s simply down to the other patients. That sounds really callous doesn’t it? They can’t help being there either. But let me tell you, it was awful.
It’s a six bed, single sex oncology ward. One woman did nothing but whinge in one of those pathetic helpless little girlie voices, “I’m neutropenic, who made this sandwich, I have to be careful you know”, and in the next breath whinging that her takeaway Indian meal she’d had brought in was leaking sauce all over the floor. (It went on!). Another lady lay in her bed, I suspect close to the end of her life. Whether she was aware of much going on around her I don’t know but I’m sure her family were. A third lady spent her time talking, quite loudly, on her phone telling the world how the staff were with-holding morphine from her and then making racist comments about one of the nurses. There was also mention of sweet jars filled with pills being knocked over by cats and GPs confiscating the lot! The fourth lady sadly had the start of dementia to deal with along with her other ailments. She slept for much of the day but came to life at visiting time and continued through the night. She had conversations with people who weren’t there, getting cross because they weren’t doing what she asked. One night I found her next to my bed (she was in the furthest bed from me!). Apparently I had a hidden stash of chocolate and alcohol and she wanted some. I tried to carefully disentangle her zimmer frame and feet from my drip lines and guide her back to bed but had to use the “call” button to get the night nurse to come and help out. The next night she needed a wee and shuffled to the middle of the ward and did what she had to do. Again I had to get up and go and find the night nurse, fearing that she’d slip and really hurt herself.
The fifth lady was in the bed next to me. She was elderly and obviously very poorly. She still had a smile on her face and tried so hard to not inconvenience the nurses. I had no option but to lie in my bed and listen to the medical team trying to clear her lungs to help ease her discomfort and perform various other procedures to help her last hours or days be more comfortable. No option but to overhear the conversations her family had around her bedside, remembering that they had to speak loud enough to be heard above the shouting into telephones on the other side of the room. Lady number five died.
She hated it so much that she left before her procedure. She returned a week later, and then started another kind of chemotherapy.
Three weeks passed without any more posts. People left comments on her last post to ask after her.
This is what I found yesterday:
I told a fib – back to medical stuff!
(9 October 2010)
Apologies all round but this is much more cheerful than normal.
I’m in a local Sue Ryder Hospice. Considering my severe dislike of hospitals this is out of this world.
I have a room to myself, staff who are so cheerful, considerate and just downright lovely!! The chef is brilliant and tempted me to eat again, all fresh and home cooked. I think I’d be perfectly happy to end my days here!
On the treatment side, I can eat, I haven’t slept so well for ages, much less pain, (less grumpy!!!) and and and…. haven’t been sick for 5 days (Yippee!!).
My legs haven’t changed but then my sodium isn’t improving quickly! But – at least it’s going in the right direction. My super duper friend Dr M came to visit today and we did a bit of an adventure on wheels around the beautiful grounds. She assures me she’s a trained wheelchair driver!!
And now I’m waiting for visitors – hurrah! 2 wonderful friends from where we used to live and one of their delightful daughters. They arrived with an armful of cards from friends and themselves, along with presents. I have to admit to not being able to read the cards until later as one glance and I was quite choked! Mr Bad Fairy was able to get here too and meet them for the first time which was lovely. Despite living so close originally we never managed it previously, they’re now about an hour’s drive away from where we live. Anyway it was wonderful and I can’t thank them enough for making the effort.
Followed immediately by:
Playing on Rainbows
From Mr Bad Fairy
The last post was taken from The Bad Fairy’s notes whilst staying at the Sue Ryder Hospice. She insisted on flying home for the day on Thursday so we took Miss and Master Bad Fairy out of school for the afternoon and had a lovely time on a remarkably sunny day.
Sadly The Bad Fairy passed away peacefully in her sleep at 5.15pm the following day (Friday 8th October 2010), she always had great timing! I kissed her fairwell as she slept to start her on her next adventure.
The Bad Fairy has been an inspiration to all who knew her. She was always modest, selfless, ready to smile and on the side of the nurses! She will leave a big hole in our lives but her spirit lives on in Master and Miss BF.
The fairy dust will be sprinkled in an area of the garden dedicated to wildlife and directly below where the rainbows always rise.
I shall keep an eye on this blog and show it to old friends and new. If anyone reading this needs any help or a sprinkle of magic dust then the BF family will be here.
(back to me)
I exclaimed out loud and then I started to cry. It’s the next day and, whenever I think about her, I start to cry again.
I was diagnosed with breast cancer in January and I haven’t cried once this year. Someone I just read about dies and it makes me cry.
I don’t know what I expected by following a blog of someone with secondary breast cancer. Did I think she would get treatment and that she’d live a long life?
It was only last week that I read a booklet by one of the cancer charities about what happens after breast cancer treatment. It said that secondary breast cancer can’t be cured – it’s stage 4 (of 4), or advanced breast cancer – but can be controlled, sometimes for many years.
I started reading a blog in March of someone who died just seven months later.
I am trying not to dwell on what it must have been like for her friends and family but, at some point, they must have known that the prognosis was not good.
I feel sorry her husband for losing his wife. I feel sorry for her children for losing their mother. I feel sorry for her parents for losing their daughter. I feel sorry for her friends; she must have left a big hole in their lives. And I feel sorry for me, for losing someone wonderful to read.
I wish I could think that the Bad Fairy – Claire – is now riding on rainbows.