Days 295 – 303

Waving.

Ten days have passed.  I eventually took down all my lovely Christmas cards, it was nice having you all there.  I’ve been ok, and very busy. There’s a lot to do on all fronts, and I’m wondering when to stop?

I’m trying to stop. And I think in the next couple of weeks I will manage to.  Today there’s a breeze and patches of sun and shadow and I’m moving along but there’s a thick bank of fog on the horizon where nothing is known and everything is different and that’s where I’m headed.  Once in it I’ll loose momentum and steerage – I’ll be in the hands of others.

I can’t possibly summarise the last ten days. More and more effort is spent on trying to get organised for what is to come in that misty near future.

Real help comes from unexpected quarters, and without it I’d be sunk.  Thank you friends, you know who you are.  These are strange uncharted waters where distance is misleading and deceptive; some people who are physically close quietly melt away in the mist, a shout then nothing, and then some who are far away are unexpectedly close, right at hand, talking in my ear.  These are confusing times.

Highlights:

Going with Joff and John on the train to see the boat in Plymouth again, sitting in the sun discussing it all over lunch by the harbours edge and catching the train we needed to come home comfortably with a minute to spare thanks to a demon taxi driver who without being asked manoeuvred very fast through heavy traffic like a getaway driver.

Richard B coming in to finish off the stud work in the attic of the house I’m selling next door and quietly getting on with his usual gentle calmness.  I manage to glaze the windows for the kitchen and push some paint around, fingers clumsy and numb, but it’s looking very nice.  It’s all in hand and will be done by the end of the month, ready for its new occupant MH who has been consistent and a pleasure to communicate with.

The house sale moving steadily forward in the hands of my very capable solicitor who is a master of technical legal drafting and is sorting out all the old and new boundary issues with great thoroughness.

Deciding on finally finding a cancer care nutritionist to guide and refine what I’m trying to do to support my treatment.  Liz Butler was senior nutritionist at the excellent Penny Brohn Cancer Centre in Bristol for 8 years and I think I will be in good hands. I see her this week in London.

Finding Alexandra and Kate who are going to come and help me preparing food; maybe some shopping then preparing supper and something for lunch next day.  Alexandra is an artist and I know her only in that capacity but she is also working as an occasional cook for people who need help.  Which I finally have realised I already do.  I’m doing my best with diet but it’s not enough, on my own I can’t sustain it.  I know she will be excellent, making it interesting and fun. We are meeting later in the week to plan how it will work, not just for the next 7 weeks of chemo but for my month in hospital which has a very restrictive diet and of course for the many months ahead as I make my recovery.  I can’t tell you what a relief this is.

Going to see John at Back to Balance for some massage to help with mysterious aches and fluid build up in my feet.  More confident hands!

Buying a dishwasher and planning a veg prep and juicing station for the kitchen.

Lowlights:

Sleepless nights are the norm. I’m trying to keep calm but it’s not easy and I wake in the early hours often with a dark and menaced mind. I get unreasonable and cross. I drink hot water or almond milk, nibble oat cakes and banana, sit up and read for a while and hope not to hear too many bells sound outside.

My body is suffering the heavy chemicals which are confounding my attempts at keeping fit. I’ve developed a sharp pain inside my right knee which I don’t think is exercise related and interestingly came up as a symptom of something on the nutritionists detailed questionnaire yesterday, under Adrenal Function.   And an increasing pain across the back just below the shoulder blades, again a question under Kidney Function.  I guess I’ll find out more.  I am in any case booked in for a kidney function test next Monday at the hospital.  But meanwhile I’m limping and it’s put a stop to rope jumping for now.  Shame.

Something else.  I don’t even want to talk about it, but here’s an extract from yesterdays email to my heroic MacMillan Nurse Caz:

‘Second thing, just to make sure you know it’s Monday morning; I’m developing small lesions on the skin around my anus that are bleeding a bit, aggravated by toilet paper, which I think is to do with the hairs finally growing back and being heavier than before.  They are rubbing the skin raw at that point. Funny that arse and armpits grow back last!  I’ve not been constipated eating lots of prunes and everything’s fairly normal.  I can just wash with water and stop using paper, but should I be doing anything else about infection?’

No one should have to think about this before you’ve even got a cup of tea on the go, but she does and back comes the thoughtful advice.

A stressful evening last night with Dad who is worrying about my treatment and whether I’m getting the best.  He’s talking to an old colleague of his Dr CK but it’s not satisfactory relying my details through a third party so I agreed to write a summary of my treatment to send to Dr CK and while I did so to try to neatly pose the questions and concerns that have arisen at certain moments as to whether I am getting the best treatment.  It’s a difficult and fraught area.  I really don’t need any more doubts about what I am embarking on here.  I’ve had my procedural struggles with my health team which I’ve overcome and documented elsewhere.  Deep down I’m very upset that the ENT surgeon who saw me in 2012 failed to send me for a scan when she could find no sign of anything that caused me to loose my voice.  So stupid.  I’ve not asked this question but can guess that I’m very likely to be here facing stem cell transplant because I was presented late Stage 4 rather than early Stage 1 a full year before final diagnosis.

Furious in fact.

But I am where I am.  And I need some calm time now please.  I am worried that there are extra risks in the stem cell transplant procedure here in Cornwall; not because of my excellent Haematology team who are working very hard to save my life, but because funding is such that Treliske can’t do the whole procedure in one place.  This means that after harvesting my stem cells I am to be ambulanced to Derriford for the nuclear bomb of Conditioning Chemo that should destroy the cancer (and my bone marrow) and then receive the transfusion of new stem cells.  I’m then transported back to Treliske for the aftercare.  So double the exposure to two different teams and two journeys at the moment of maximum depletion of my immune system. I don’t know. Should I worry? I’ll probably put these questions to Dr Kruger next week.  But even if it is a concern, what to do about it? Try to find treatment in a bigger hospital with a good track record? How to find out this stuff and how to act on it?  And what about my homies, the people who are gathering around to help? They can’t do much if I’m in Birmingham or somewhere can they.

Lights Out.

I’m so tired. It’s 5.20am and I’m going back to sleep.  Things will be clearer tomorrow.

Some people ask if it helps to write this blog. It does. It calms me down.  And it helps me communicate because I can’t talk about these thing over and over, it’s too exhausting. I need people to move forward with me with fresh ideas, not ask about yesterday over again.

This is a learning curve.  I don’t ask for help easily or really expect it – it’s not in my nature and it’s important to me to feel able and to keep going.

I write this down so friends and family know where I’m at and if they can help they will.  And they do.  Roman offering to come to stay for a while to be here and help me, probably that first week after treatment. Fi B coming just before.  Diana researching Metabolic Diets for me and making sense of it all.  Ali and Milli as always there.  Local friends calls and messages and often long emails from friends afar and wide, so few of which I am able to answer in person at the moment.  Thank you all – all will be well.