Monthly Archives: May 2015

Don’t know what I am doing. …

It’s 10.30 Friday night. I have just got onto bus for London.It feels like the right direction to be heading. I really don’t want to be going anywhere else.

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The Gathering

My bubble is slowly bursting. I have been back and forth to London spending time with my friend in a fairly regular way. “Regular” ? Hmmmmm –  this includes her being in her pyjamas (defiantly still white!), not going out, surrounded by drugs, with a syringe driver attached, swollen reddened face, scarred and weak…but, it seems, we can get used to anything when there is a familiar talking head, wanting to remain in control and wanting to make her own choices. Yesterday was different … she “allowed” us to make some decisions, well aware of the implications and I was able to hold her, stroke her and tell her that it was OK to let go…Tears drifted down her cheeks as she accepted that she was too weak (even with my help) to get the few steps to the bathroom.

But changing gear means that the nature of my visits will change. We are segueing out of the intimacy of curling up on the sofa and chatting, into a stage where there are more people around, friends, family alongside an increasing medical input. Somehow losing this one to one is more than I can bear, except it is inevitable and I have to bear it. We had our first taster yesterday where 4 of us sat around discussing how we manage what’s coming, whilst she wasn’t in the room. It was surreal. She always has something to say about everything…

That all said, we did manage to fit in talking about our new life as “angels” and how that might pan out! Cancer is never going to rob either of us of our spirit!

More herceptin for me on Friday…assuming I am here to have it…

Moving back and forth from the precipice

Pondering mortality, my own and that of others has pushed me into some seriously uncomfortable places over the past days, months, year. I have finally tripped a switch which is enabling me to start unravelling and facing up to the hows and whys of my life choices, as well as starting to lay some solid foundations for my onward journey. It has been more interesting than I thought possible opening myself up to “analysis”  (my interpretation rather than psychoanalysis) and I am finding that I am starting to reach elements of myself that have been under lock and key for decades. Good stuff for me to be investing in, I feel.

It is hard not to think about my own cancer as I watch it growing exponentially across my friend’s face – truly staring me down. Slapped wrists seems no deterrent as I keep veering towards the laptop, in a layman’s attempt to try and discover for myself what having “ascites” could signify, develop into or mean (or not..of course!) I wonder if, what I had thought of as a “healthy glow” is in fact jaundice, whether I have abdominal swelling or not…Google…what a curse! I need to calm down and wait for new scans which are booked for next month. Life with this level of uncertainty is how life is with cancer so I’d better adapt.

The left hand doesn’t know what the right hand is doing

I have been spending time with my friend again this weekend. Her world becomes smaller and smaller…but not her spirit, tenacity or her humour. We snuggle down in her white bedroom which now resembles something more of an apothecary than a bedroom. New drugs arrive daily, some liquid, some more hard-core (in tablet form) which need to be crushed as mouth cancer is not compatible with tablet taking. These tools of the trade sit alongside the morphine syringe driver…creating an atmosphere of an alternative speakeasy! Despite all this somehow we still find stuff to laugh about..even though every goodbye is more tentative, the hug tighter, the kiss longer…

What’s the difference between Marks & Spencer Just Food and Waitrose

  • M&S salad bags are freshly washed and ready to serve
  • Waitrose salad bags are freshly washed and ready to dress

Meantime in my own medical bag of tricks, I seem to be developing a variety of symptoms on the right hand side of my body. Not really worried but I seem to be focusing in on them because my cancer is on the right hand side. I have developed almost constant pins and needles during the daytime in my arm and hand, which I expect is not even worth remarking upon but …here I am mentioning it. Then to complement this annoyance, I also have been afflicted with severe night time leg cramps on the same side. This is likely to be the sciatic pain I get from my back problem, spondylolisthesis..but why should it strike now? Why not? I guess….

Annual returns

I am (stoically) directing my eyes full-beam ahead, despite the obstacle course of things (legal, medical, financial, housing) I am negotiating. And, head and shoulders above all of this horse trading and waiting remains the impending death of my close friend. To say we have been “lucky” might be pushing it, but the huge upside of us both having cancer at the same time has meant we could spend more time together in the past 2 years than at any time since student days. We have been capitalising on the space we have had for a lifetime of conversations – discussing things past, present and future… She wants Dolly Parton singing “My Tennessee Home” at her funeral (perhaps not in person..but that would work too!) and we have laughed about her directing proceedings beyond the grave.

When I am not with her I am having to use every effort to avoid consulting my rear view mirror. Downsizing means a significant investment of time in sorting through both “stuff” and memories. Whilst I am not of the sentimental persuasion, I am finding that this is really tugging at more than my heartstrings re-evaluating what I thought was true about my past.

I am relieved to know that I cannot inhabit the sanguine persona (personae?) of happiness at any price, that my “husband” and “friend” have played/are playing..somehow I think that my need is to inhabit these emotions and work them through so that in time I may be able to toss them into the wind. Meantime, a 4 bedroom house, loft, cellar, shed, storage “corridor”, garden and more…require rationalising!

This is all happening a year on from when I learned that I was being left, maybe exactly the right time to physically move on and leave “it” all behind. Too many tears, too much incomprehension, too much loss, too many lies to start looking back now. I won’t be broken and my amazing flash mob supporters are there again and again and again and again making sure.

Writing home

Maybe I am done with writing courses. I am always wanting to take another one..and another one…because, aside from greasing the creative cogs, they fill me with such joy and a sense of potential. But…I may have to put a full stop to that, for the time being anyway. The fact is that my concentration is shot to hell.

Whilst I accept that multi-tasking skills remain a speck on the horizon, I can’t seem to focus on anything in hand for more than a matter of minutes. I continue to grapple with “mindfulness” but suspect that my constant thinking about trying to be mindful defeats the point. Surely I should have managed to embrace its most basic techniques by now, but no… At least I still had the chutzpah to believe I could and would manage 3 consecutive 11 hour days of learning about “story development” but it was not to be, not this weekend anyhow!

Call me shallow if you will, but…bizarre though I know it sounds, I found that escapist fantasies, friends, drinking wine and shopping weren’t beyond my concentration abilities so that’s what I did! Indeed, what on earth else to do on the day when we faced the reality of David Cameron running the country for 5 years?

The C Word

I have just watched the BBC drama The C Word (based on Lisa Lynch’s book and blog) which was screened last Sunday AND and I finished reading The Iceberg by Marion Coutts. I found both absorbing for different reasons but couldn’t help but be slapped in the face by how “lucky” they both were to have had spouses, loving them, determinedly at their sides, reassuring them and doing the journey with them. Even the sanitised version of chemo (and its aftermath) that I saw on screen made me see how much I had internalised all that suffering to (bizarrely,in retrospect) make it easier for my husband.

If you are interested in inhabiting a cancer story, I cannot recommend too highly Marion Coutts transcendent memoir, The Iceberg, which has recently won the Wellcome Book Prize. I found it the most incredible soul-baring depiction of illness, communication, family, friends, love and death. The author writes about her experience in such an unflinching yet beautiful way that I found myself torn between wallowing in the poetry of her language whilst absorbing the caustic way cancer affects different lives. Harrowingly un-put-downable (if that’s a word!)

On a more personal level, I have just come back from the first of my appointments in what I am terming my medical maelstrom week. This was the most important one – oncology clinic. It appears that my cancer is under control with the herceptin treatment…but…just as I was about to give out a big sigh…it appears that the radiographer reported that the scan showed fluid in my tummy. This may be something or may be nothing but means that I will be re-scanned next month to see if it has gone..or not. If not, it may (“may”) be a secondary, but I am not planning to go there just yet as I have:

• a divorce to complete
• a house to sell
• another to buy
• …and plenty of living to do.

Tomorrow I have echocardiogram, psychotherapy, meeting with solicitor, herceptin treatment and viewings on the house. I was never one to let the grass grow under my feet!…I now sit and await the Healthcare at Home nurse to call to schedule when she is fitting her visit in…

Not feeling very chatty so I will be avoiding the phone for a few days.

Straw woman

After a very curved ball start to the day yesterday which involved booking a curious half day course (and that is putting it mildly!), the day spiralled into a complete nosedive…my coping mechanisms just gave way and left me in a tearful puddle at all the loss I have had, continue to have and still face.

But today’s another day. Hopefully, a passing moment of self-pity and back to papering over the cracks and moving swiftly on