Good Grief 3/3

I’m sorry, I don’t have a solution. I’m not really sure I have any good advice either. Fat lot of good I am.

I hope by sharing how hard I found it, how badly I did at it and how long it took - someone else might not feel so alone. Might recognise sooner that there is another way. Might find the sun that little bit sooner.

In a nut shell then:

I didn’t deal with my emotions. From the very beginning I threw myself into ‘getting better’ without understanding from what. I also threw myself into everything, anything that meant I wouldn’t have to think. I wrote a lot of lists, at the top of every single one was “feel better”. Like the simple act of writing it and crossing it off would ‘cure me’. I ignored A’s pleas that I might need professional help. I ignored A a lot actually. I got frustrated and angry and bitter. I fake smiled A LOT. I couldn’t understand what was wrong with me. Only when A left. Only when I had two shows, a get-out, was in charge of a team of 24 and I couldn’t move from the bed; when I honestly didn’t know how I was physically going to do it all. Only when I hit my rock bottom, did a crack of self preservation shine out from my very dark mind and I picked up the phone.

This all took 3 years. They weren’t all doom and gloom years. I had a lot of good times. I had a lot of freaky ways coping!

So, to conclude, I guess (with a few little blog lists):

Bad Grief and Good Grief - feels rather accusing doesn’t it? There’s no blame attached to the title of ‘Bad Grief’. How can there be? When we are all just making it up as we go along. When we are not taught how to grieve.

It’s simply a phrase that may help you recognise, as I eventually had to, that some grieving habits may need to be changed:

• If you will do anything, literally anything, to avoid what’s in your head. I ‘did’ work, box sets, and worrying about everyone else. 

• If you will do anything, literally anything, to avoid feeling.

• If you are getting flash backs, like I did, for a prolonged period of time.

• If you are feeling overwhelmed.

• If you are treating grief like a race, there’s no finish line and no prizes.

• If you are worried you’ve been grieving for too long and ‘need to get over it’. You lost someone, you’re not going to get over it, you’re going to get used to that space, eventually.

• If you are comparing yourself to anyone else, me included. You don’t know what is happening behind closed doors.

• If you are trying to prove to everyone, including you that you’re FINE. You don’t have to be fine.

• Worrying about everyone else but yourself.

Good Grief habits, in my opinion:

• Allowing yourself to feel, just what you are feeling. The fact you are feeling it, gives it legitimacy.

• Recognising any guilt and Letting It Go. There is only you to forgive you now (I’m sorry about that), so let yourself off the hook.

• Work at forgiving them too.

• Knowing, really understanding, that there are good days and bad days and just because the bad days come back for a bit, it doesn’t mean you’ve failed. You can’t fail.

• Being extremely Kind to yourself.

• Talking about it, sharing it. When it’s fresh and new, when it’s years old. You may just help someone else.

What helped me:

I’m an advocate of talking to strangers. I’m an advocate of talking to friends too but in cases of grief, we need no judgement. We need not even the hint of judgement.

Someone trained to listen. To recognise certain signs. Someone who has no other agenda. Just to listen. 

Confession time; I’m a navel gazer, I can analyse myself for hours. I am very self aware. 

I still find it the most useful thing in the world, to talk to someone trained to listen, to analyse. 

A lot of the time, just saying it out loud to an impartial human helps. They do not need to say anything other than “I think you are doing very well”. 

I really, truly believe it helps me. Try it. It might help you. 

Also, Exercise honestly helped. Who knew? Everyone? Oh OK….. 

Massage. Really. Taking time to take care of yourself is a very loving act. We all need Love.

Remembering, when I felt good, to acknowledge that in a small way. To stop and feel lucky.

It may take longer than you can possibly imagine, or sooner than you thought decent. It may take talking to a stranger or the cat or your friends and family. It may take being all on your own but some time, one day you’ll learn to live with it.  Then those days will outweigh the other days and it will seem ‘better’.

Good Grief Vol. 2/3

I’m not Happy. That phrase. I’m not Happy. That’s what changed my life. Only sadly it wasn’t me saying it. It was A.

My world bottomed out then. I went into free fall. Our beak-up was horrendous and protracted. 

It broke me up, for lots of reasons, obviously, the main one being; for me to look like a ‘success’ in the grief stakes, I needed my handsome, kind and loyal Boyfriend to be just that. I needed him to hold my hand, I needed him to hold my hand so hard; white knuckle to white knuckle.

We’re not educated on how to grieve. We are not educated on how to deal with other people’s grief. Or lack there of. If we are ‘lucky’ we observe grief and then cobble together our understanding from that. 

We can watch it in movies; but grief is a long process, so it’s normally a montage, with good music and a happy ending. 

We should be taught to grieve correctly or at least taught what not to do. There should be books without Lilies or Doves or Bible verses on the front. It shouldn’t be such a taboo anymore.

It’s taboo because there’s no quick fix, it’s frustrating and It’s hard and people cry. Everyone shies away from trying to fix what’s hard. Grief is Hard. It also shatters into a million subsections.

It’s also taboo because a lot of the feelings you are having are possibly not the feelings you feel you ‘ought’ to be having. Guilt plays a huge part in Bad Grief. Guilt for being happy, sad, mad, totally fine, all or none of every emotion ever felt. Guilt for what you said, what you should of said, what you did or did not do. Guilt is the true thief of Good Grief. 

A manual on grief, just like a manual on Chemo, would be a nigh on impossible task. There’s no one size fits all. So instead, after an initial period, grief is ‘better’ for everyone if it’s behind closed doors. Only it’s not. Grief can only be Good Grief, out in the sunshine with the fresh air and with Company.

The point when everyone expects you to be ‘over’ grief - I’d say approx. 6 months after a bereavement, is probably the point when you need people not to think that. That’s through education. 

Sharing how it feels to lose - not trite lessons on time but the actually the bones of it. The everyday, mundane, dull, dull, dullness of it. The normal-ness of it. If everyone shares, more people will recognise what will or will not work for them. That’s through education. 

I’ve been watching grown men grieve over football all week, crying on huge screens, beamed across the World. A grief so honest and simple, it  astounds me. 

All grief should be allowed to be so pure. You’re feeling it, then it’s ok to be feeling it. It really should be that simple.

But perhaps feeling anything at all, allowing your self to feel anything at all, is a battle all it’s own.

Good Grief Vol 1 / 3

I woke up this morning and had the urge to write about grief. It’s a grizzly, grey day in JULY, my own hair is covering my keyboard; so I figured what the heck?

I think about my Ma a lot these days. I’ve thought about her everyday since she died. Sometimes it’s fleeting, sometimes not so much. I’m sharing a lot of experiences with her at the moment. We are now even sharing nurses. 

• Side note: For those who worry nurses are uncaring, that the NHS is going to the dogs. Three years later, not only do these titans remember my mother, speak fondly of her but they remember and love my Da too. I bask in parental reflected glory, which makes life pretty easy for me. Nurses are Saints - 

Sharing Nurses somewhat freaks me out however. I’m mostly concerned how it affects Dad but I’m just generally concerned about how all of this (flapping my hand in the air universally) affects him. He’s stoic and wonderful but I worry.

Anyway, all this (flapping my hand in the air universally, again) makes me think about Ma. She’d be yelling at me about my scatter gun approach to punctuation on little blog. She’d be giving me a lot of unsolicited advice about my bowel movements. She’d be a tigress with all medical professionals. She’d be that wonderfully exciting mix she always was as a mother. She’d be pissing me off. She’d be holding my hand.

So I think about grief.

People say there is no right or wrong way to grieve. I don’t believe that. I think there are lots of wrong ways to grieve, I think I’m proof of that.

The thing is, I was angry with my Ma when she died; for a whole heap of reasons but you know, mainly because she died. That Mother/Daughter relationship is a complex beast at the best of times. I knew how she fought and I knew how much she’d of preferred to stay but I was still mad but you can’t be mad with someone you love, not when they die. Can you?

So I pushed it down, way down. I pushed a lot down. Sedimentary layer, over sedimentary layer, in my brain and in my heart. If you are refusing to deal with everything you are feeling and that can be A LOT. You are refusing to grieve. I stopped grieving (if I ever started properly).

That’s when the flash backs started. I relived the week, days, hours of my Ma’s death; I relived them daily, for years. Anything could set me off - hands and feet were a strong trigger. I lived it everyday. It was traumatic. But I thought it was normal. I didn’t tell anybody.

THIS IS NOT A GOOD WAY TO TRY AND HEAL. THIS IS BAD GRIEVING.

When it was all fresh and new, the phrase that that was most handed to me was “Time is a great Healer”. 

When all this was fresh and new, the phrase that most made me what to punch someone in the face was “Time is a great Healer”.

With hindsight, yes, I understand Time helps but Time can only help if you’re grieving right. What I got for the first 3 years of ‘Time’, was a completely screwed up way of coping. It’s taken a lot to unpick all of that.

In that “Time’, I saw other people ‘coping’ splendidly. Brother seemed to just sail on through. Miss E channeled her grief into an amazing new life. Everywhere I looked people were ‘succeeding’ at grief. So I’d try really hard too; flitting from project to project; fad to fad. Trying to excel at grief.

Comparison is the Thief of Joy; it’s also the Thief of Good Grieving. As I so valiantly proved; you also don’t know how people are coping, behind closed doors.

To the outside world I was a ‘success’ at grieving too and that, my readers, was the ticking time bomb in the palm of my hand. Trying to be a ‘success’ at grieving almost burnt me out. It certainly harmed me mentally. 

If this is ringing any bells or helping anyone out there in anyway - there’s light at the end of the tunnel. Go back and read All Just A Little Bit of History Repeating. I Promise I won’t leave you hanging for long.

End of Part One

10 things I sometimes contemplate may have given me cancer but probably didn’t….. VOL 1

Every now and again I have a moment. It could be passing a window, a mirror or any shiny object. It could be glancing down at my arm and seeing tubing. Sometimes it’s wrapping my arm up in plastic wrap to wash. Something every day normal  but extraordinary. 

It makes my brain explode. It’s the biggest “what the fuck?”, it’s a panic in my stomach. It’s a “HOW THE HELL did we get here?” Moment.

Everyone must get them, at the moment mine seem to be on crack. I normally have to go find myself out a hug. They floor me, they really do. In all honesty, I try hard to avoid them. I’m not advocating the suppressing of emotions but contemplating the whys and wherefores, aren’t going to help me presently.

During Chemo Wk 1, I have plenty of time to ruminate - here’s my first list…..

1. When I was small I once got caught eating raw bacon - Mum made me be sick.
2. When I was small I once ate all the Red Sanatogen Children Multivitamins in the bottle (anyone remember those chalky balls?). Brother and I both liked the Red Ones. We didn’t like the Green Ones. I surmised if I ate all Red Ones in one go, I’d not have to share (devil child). I managed to climb up to the kitchen cabinet and figured out the child-proof lid. I got caught by Mum. Mum made me be sick
3. When I was small I once sucked all of those ‘smelly pens’  to see if they tasted like the smelled. They didn’t. Caught by Teacher (multicoloured mouth/face gave me away). Laughed at by Doctor and Mum. 
4. The sheer volume of cake I’ve eaten in my life time. 
5. The fact that until recently I really didn’t like exercise, preferring to read, therefore I tried very hard not to do any. Ever.
6. My worrying. I used to worry even if I had nothing to worry about, I’d worry that I’d forgotten to worry about something. Fun to live with, yes?
7. That time I sunbathed topless and burnt my nipples…..
8. When I was smaller (but actually not that small) we got our first family microwave. I used to sit on the kitchen table and watch it go round and round, cooking the food. I love washing machines too, especially when you dye fabric. I *may* have been a cat in a former life. I don’t own a microwave now.
9. I used to really love those Apple Cider ice lollies from the Ice Cream Van. I loved the 2p Beer Bottle sweets too. Anything that tastes that chemically can’t be good.
10. I sometimes use my laptop while lying down with it on my belly / chest. I’m going it now. I should probably stop……

To conclude I was a weird kid, it’s a miracle I survived. I also once stuffed a catkin up my nose. It (inevitably) got stuck and needed medical assistance to be removed. In fairness, I was only following my brother’s example.

For the record, cutting down on cake, exercising more and trying to worry less are going to help your health. As would; not eating crazy, inedible things and standing in front of the microwave…..

Two Hoots

Rounding the corner on Week 1 of Chemo 2 - Woo Hoo (and that’s about as much enthusiasm I can muster for that at the moment). The brain’s kicking back in, vegetable brain is so frustrating.

Still trying formulate the best, most truthful, way to write about my chemo. I’m a newbie and my thoughts on the process are still formulating. 

I’m starting to realise that routines work for me. Also forging your own way, listen to yourself and don’t get pushed down a path that doesn’t suit. Like most things, I guess.

What I feel I can talk about is hair loss (again). I honestly thought it would be a case of hair today, gone tomorrow. Three haircuts later, I’m willing to concede this is not the case. It’s shocking how protracted my hair loss is.

Actual ‘treatment time’ and losing hair is quite distressing, through the bubble of other crap. I look like a Screech Owl or A Rock Hopper Penguin. I suggest finding loved ones who find small birds appealing or who can at least convincingly lie about it. No mangy dog so far, unless my spies aren’t keeping me informed correctly. 

As I write this post, I’m leaning on a box containing clippers. A and I are having a gentle battle of wills about clippers at the moment. I was expecting to buzz cut, one hair cut back - the joint insistence of both A and Hairdresser D is what kept the crop. I honestly thought at one point, D would stop and admit defeat but my lovely men kept me with an actual haircut longer than I would have. I’m grateful, like always.

But now, now I waft like a Pixar cloud - puffing out tufts of hair. It gets everywhere. Food being the worst (sorry). It may be time to bite the bullet and defuzz a bit further. 

I don’t know how I feel about that. Actually being hair free. It has felt an awfully long time coming. I look at pictures of shoulder length haired me and it feels like years not months. I’ve liked my cropped hair. I will miss it. 

I think about the summer ahead and feel a bit intimated. Exciting, Happy occasions - Weddings, trips I’ve planned have another side now. I (believe it or not), I am quite shy, so it’s strangers and reactions I’ve toughing up for. Not so much for when I’m out and about with family and friends but people but when it’s just me. 

I’m walking hopefully and I don’t mean to suggest (a head of time) that people will necessarily react badly.  I just know I am very lucky in my lovely support network (if you’re reading this - that’s you) which keeps me in a very safe bubble. 

The way of the world means, that others, may just not be as good at poker faces. Staring, I think it’s called. I’m quite oblivious at the best of times, especially with my headphones and sunglasses on. It’s a look I’m going to cultivate at any opportunity / weather.

I heard of the best come back to Chemo baldness heckling. Should anyone yell “Nice haircut”. One should reply “Thanks my Oncologist gave it to me”. Brilliant.

However it occurs to me, if you’re dealing with people, ignorant enough to be heckling a 34 year old bald girl - they may not actually know what an Oncologist does.

Probably a good thing I have a wig fitting tomorrow. Curiously a lot of people will know this isn’t my actual hair - it’s for strangers. Perhaps a down-side to my out and out honest blogging?

Single. White. Blood-Cell.

My cunning disguise.......

It’s hard to find a title for a post on neutropenia (a word I just looked up how to spell). Well now, this is an unsexy subject it isn’t it?

For those who don’t know, about 7-10 days after Chemo your White Cell Count takes a dip, a nose dive actually. This is what I now call My Bubble Week

My doctors prescribe an immune system ‘booster’ post chemo, it’s a self inject - which we all know I’m a fan of. The injection isn’t too bad this time round. Little tip; slap your skin (lightly), on the area where you are about to give the shot. It really helps.

Anyway, My Bubble Week, where everyone and everything is tallied in my head, as potential germ smugglers. I’m probably a little OTT but the alternative is a stay in hospital, in solitary. That is what Hell looks like to me. Everything has to be clean, clean, clean and everyone has to be at arms length. This kills me because I would probably work for hugs instead of cash, sad but true. Actually, I kind of cheat with Pa and A. I assume I’m immune to them.

A. and I have this King Penguin Nuzzle that provides affection but minimal contact. You basically hook your chin over the other persons opposite shoulder. If A. allows me to live now I’ve shared this, I should probably patent it…..  

It’s hard to say to loved ones, I’m really sorry I’m not touching people this week - p.s. please don’t bring your kids around ( I view them as a hospital stay waiting to happen) ….. Especially, when most of the time I’m seeing friends. Friends, I’ve not seen in AGES. 

I can actually see people want to launch themselves at me, as I do them. It’s heartening and makes me happy to be a human, where hugs exist. Hugs are a way of reassuring people that I’m OK, that the world hasn’t truly spun off it’s axis, despite what it feels like sometimes.

I pushed all this to it’s limit the other week, first time out in a while and was surrounded by friends. Trying to explain to people that you can’t touch them, prior to them just hugging you is tricky. I spent a lot of time with my handy pocket wipes; which now I think of it, probably made me look like a bitch or a recluse, like Howard Hughes (I’ve not started peeing in bottles yet).

A. says a t-shirt is in order; “Don’t touch me, I have Cancer”. I’ll wear it, if A. wears one that says “Touch me, I’m with Cancer” and an arrow…..

Pa and A. are amazing; they practically douse me with Dettol at any opportunity. We have to spray down the Bathroom every time I wash. A. even wipes the car down after every trip to the allotment. 

This is all a little new and a lot strange to me because I really am an advocate of a little dirt being a good thing; especially when it comes to health. Now, I have to wear gloves all the time on the allotment and be fearful of cut flowers. I have become my own H & S monitor and I have gone mad. 

Until I forget,that is, which is easy to do. I merrily skipped into the Rubbish and Recycling Room of our Building the other day; which must be like going into the heart of the Death Star. A. practically frogmarched me out again and then scrubbed me down with yet another 99.9% killer wipe……

Hair Today......

Back in Hairier Days....

I could have called this post a million other things but I had to go with a cliche because hair loss and Chemo seems to be the biggest cliche there is.

A few days ago, I went out for the night, mainly because I still have hair. I wanted to celebrate this fact and the fact that I was feeling like a human again. Going out because I still have hair, just another in a long list of things I never thought I’d be doing.

I wake up everyday and look at my pillow expecting the worst. It’s like the reverse of Christmas mornings of my childhood. I’m not really sure what I’m expecting. I think it may be like those cartoon characters, who when they run away, leave a slow waft of their hair behind them - is that Tom or the Coyote?  

I remember Mum traumatising me, by calling me over and then pulling a chunk - and I do me chunk - of hair out of the back of her head. I’m not sure if she found it funny or was just fascinated, probably she was traumatised too. Perhaps it’s a mixture of all three.

I really am going to try hard to be all ‘bald is beautiful’ because there are so many role models out there. But here’s my new theory, you really need eyebrows to pull bald off. I think this is doubly so if you are dark of hair and brows. 

Mind you my friends, the lovely and very yummy looking D-W sisters, are so blonde they don’t have brows. I’d never noticed until they brought it up. So hopefully I can take a leaf out of their books.

Here’s the rub, I think you can have no brows and lovely hair or no hair and lovely brows. Both at the same time? I think you may just look like you’re having Chemo. 

Don’t get me started on eyelashes, what is a mascara lover meant to do with no lashes? Apparently brows and eyelashes may last a little longer than head hair. I rub coconut oil into them each night; in a bid to keep them happy and attached. i have no basis that this works, none at all. I’ve read nothing on any weird corner of The Net. I just think Coconut Oil cures all ills. I sometimes rub it into my hair as well.

What I wasn’t expecting is how odd my hair feels now, like it’s already a wig or it’s already separating from me. Actually, I’m not sure if this is me separating from it or it from me. It’s probably all in my head (boom boom).

Do you know what really disturbs me? The thought that all my hair will go, ALL my hair. Body, Head and Face. It makes me think of those crazy bald cats or when i used to wash my hamster (which sounds like a euphemism, but it’s not). Though on the plus side in these summer months I can skip about hair free, and I will not need to question why I feel the need to do so.

I have been rocking the Continental armpit look, you aren’t allowed to shave after lymph node removal and I didn’t want to be lope-sided. It certainly saves time and if it’s good enough for Julia Roberts and Madonna…..

I have started to collate an amazing collection of eBay wigs (I’ve gone for ones with big fringes - two birds, one stone) and vintage scarfs. Pa and A. are a little weary that I’ve got eBay wigs, especially the pink and blonde one. Just FYI, Dolly Parton told me (and about 500 others) just last night, that she always wears wigs. I love her a little be more now. 

In fact as soon as I finish this I need to make a wig appointment at the hospital. This is life now.