Wednesday, 8 May 2013

It's not much of a roller coaster

I've heard cancer described as a roller coaster, a battle, 'a prat' (big mistake Race for Life - a big, clumsy, thoughtless, mistake) and probably most accurately as a 'five year long car crash' by Ade Edmundson.  I'm kind of hopeful on the five years front, as right now that's looking like a good stretch for me.

Cancer doesn't have highs and lows. Not when it's advanced. When it's advanced, cancer has some glimmers of optimism, rare beacons of hope, and lots and lots of relentless moments of deep, intense sadness. Frustration for the life you can no longer have, tears for the moments you'll miss and numerous occasions where you have to pull it together, 'live in the here and now', 'stay positive' and sometimes just not cry, even though you really really want to.

Unfortunately I am having one of those periods where it's all a bit tough right now. Sorry I will try and be more upbeat and I am sure my naturally sunny (sorry caustic) disposition will be back in place soon, but right now I am a bit down.

My cancer on the other hand isn't. Having taking a good old kicking at the hand of chemo I thought it was feeling a little defeated. Unfortunately as Dr C informed me I don't have a nice placid cancer, mine's a feisty bugger and has chosen my chemo break as an opportunity to come out of it's corner with a couple of hard knocks. The good news is that it's not moved to any new organs or areas, the bad news is that it has moved forward again in all the places that it had been subdued. The lungs - tumours are visible again, the liver - it's back and the sigmoid colon (my primary) is finally causing all the bowel cancer symptoms I could have done with about a year ago. Basically it's a case of two steps forward, one step back - a painful kind of do-si-do. 

The main problem is that the re- growth of the primary tumour is such that it is no longer long and thin but (rather like me since chemo) is sticking out in a series of awkward positions. The result of this is that I can no longer digest anything vaguely leafy or fibrous (I am on the white food only, teenage boy diet) and I am in fairly constant pain. There's not a lot of room down there and the tumour is causing me back ache, a weird pain in my right leg, stomach cramps and bloating most afternoons, all coupled with a non-stop pain in my lower stomach. The pain is tough and debilitating  and is definitely a big reason why it's all feeling a bit harder than it should do. 

I do however have a stunning cocktail of drugs to take; and in a possible Breaking Bad type career move, have considered popping across to some of the more notorious Battersea estates to sell my temazepam, morphine, steroids and tramadol. Coupled with some out of date ketamine from the Battersea vet clinic I can feel a whole sideline coming on. Obviously these views (jokes) are my own and not those of Battersea. Blimey this blog is cheering me up already.

Anyway I am back on the properly toxic drugs on the 17th May. The PICC line is reinserted on the 13th (happy birthday Al) and I'll soon be back to the cycle of feeling a bit crap, a weekly bucket session and the joy of the Chilworth Day Unit and all those cheery old men. Woo hoo. Actually I am bizarrely looking forward to it. Chemo works for me and I am in so much pain right now that the thought of the primary shrinking back down is just glorious.

I do have a plea though. YOUR CLEGGS NEED YOU! Please give my husband some love and the odd break! It is seriously hard being the other half to a patient. He has the stress and worry and sadness to deal with day in day out. Plus there's the pressure of looking after three kids when I am stuck in my chemo haze and unable to cope. At these times I am 'neither use nor ornament' as my northern friend Sith used to say. So please ask Al how he is. Please. Offer to look after Ilias or Rosie (she's more demanding...), tell him that he's brave, wonderful, inspirational etc because actually he really is. Just imagine for one moment that the person you love and live with was in constant pain and was probably going to die and that you were facing years alone with three kids; and also imagine that the one person who would normally comfort you can't. That's Al's every day. He needs a bit of love and if there's one thing you can do for me, for us, is to give it up. I need to know that he has a support network because I'm not able to provide one a lot of the time.

The good news is that I have been slightly dreading this blog update but I actually feel better after writing this or is that the morphine's kicking in...

Onwards and inwards with the PICC line and chemo.


  1. Hello lovely person. Reading your blog is such a privilege Jane. I imagined us sitting having a cuppa while you chattered on about these things; what a tribute to your courage, humour and natural style of writing from your heart. You've also been brave enough to give us a glimpse of Al and the kids and an insight into their needs. I'm sorry I live too far away to be of any practical help, but just know that you all continue to have a special place in my thoughts and prayers. I'm wrapping you in love and healing. B x

  2. Much less hassle selling your drugs on the Silk Road website rather than on the estates of South Chelsea (only joking!)

    Holding it all together is hard but especially so when you've got real pain to deal with which in turn just debilitates you

    Stay strong (easy to say) but do!


  3. Just want to say how much we love all you guys and how miserable it is to hear you're having such a tough time, Jane -- we're sending you good thoughts and hugs. I'm also aware that I'm not there for Al anywhere near as much as I should be, so I'm going to change that starting tomorrow. Al -- you will be hearing from me. Big love to A, J, Z, E and R. Jon and Katie x x

  4. We're not local but I am with you all every day (not like a stalker, y'understand, just like.. well you know).

    We are more than happy to come down and whisk off the kids to play for a few hours, bring you a cake and a takeaway and paint nails (Al, just tell me what shade you fancy) and give any of you a break/peace and quiet/comedy DVD as required. And bugger off out of it as required.

    And the season's nearly finished - don't make me stay in my flat every Saturday!

    My only limitation is early mornings Sat we have music. Other than that book what you like and I'll turn up. Seriously.


  5. Wish I lived closer, I'd help with your children in a heartbeat. I'm a few months behind you, and despite chemo my liver tumours have finally decided to start aching. It's depressing and means you never get the chance to forget and pretend it's not happening.

    Sending hugs, and hoping the humour comes back soon.

    Lisa x

  6. Jane. You know we're only a phone call away and are more than happy to help. Seeing you tomorrow and I'll bring along a few bottles of Badger Ale which should help the old boy a bit!!

    Fight it Jane - you're much more of a feisty bugger than this dreadful disease which must give you a head start!

    Gentle hugs and loads of love