Today is a lovely damp Scottish Edinburgh Monday, the kind I like: gorgeous, tinted with the misty and melancholic with birds. I am sure the Flying Pickets (circa 1970s 80s acapella UK all male singing group of which one was married to someone i knew from my undergraduate years at Essex University 1967-71 had a song that begen ‘Today’s Monday, Today’s Monday, Monday is washing day, is everybody happy? you bet your life we are…) . My son Tom now 30 was a huge fan from around the age of 2!).
It is the third day of the first week of my third cycle of chemotherapy or life infusion which is what I call it to give it a positive spin. As Andrew who heads up the amazingly supportive Maggie Centre told me a few weeks ago it is good to have a very positive life affirming image even if one is being filled with chemicals which are killing of everything that comes into its path. The Maggie Centre (of which there are now several others in Scotland and the UK) is a ‘home from home’wonderfully quirky welcoming place in the grounds of the Western General Hospital founded by Maggie Jencks before she died of cance,r where anyone who has cancer or their families and friendn can go to chat and get specialist help and also do wonderful meditation, relaxation, art, writing, cooking and other courses and classes. Jencks was told by a rather off-hand doctor that she had serious (i.e. terminal) cancer in a corridor of a hospital and decided with no one to hand to even talk about it this was no way to do it.
I had a one to one session with Andrew at the Maggie Centre before my treatment started and he asked me how i imagined it might be. I said being filled with triple action bleach or strong garden weed killer (neither of which i would normally ever use as I am a born-again eco warrior) in a Stasi like prison centre.
I once stayed in a Stasi Training Centre in what had been East Berlin with other conferees for a bi-annual IASPM music conference (The International Association for the Study of Popular Music of which I have been a member since 1983, and having just to my eternal pride been made an Honorary Life member last week – July 2011 – after having been elected International Chairperson 2009-2011, and sadly as a result of my cancer unable to attend the 30th anniversary conference in Grahamstown, South Africa last week that with the erst of the wondeful executive I had helped organise etc A terrific honour! ). I do not remember the Stasi Centre as more grim than many colleges set in the countryside: austere and basic. But having visited East and West Berlin various times when the wall was still up I have residual fantasies of a unspeakable grey underdround prisons probably fed by my knowledge of Chilean ad-hoc prisons following the 1973 couop d’etat which i lived through working in Chile at the time. This chat with Andrew made me work on seeing chemotherapy as a life giving force and i came up with the rather jovial term Life Infusion hopoing that is what it will give me – life of at least say five years rather than the expected 1-2 years which is what the surgeon and his team told me following my operation.
They came in to see me the day after and i could tell from their body language that the news was grim. They had taken out a large tumour and when i asked its size the surgeon Mr Patterson just screwed up his fist. He looked bleak at the time. Later a young surgeon friend Alex said that would be because Patterson may have felt a sense of failure as he would have wanted to get all the cancer out in the operation. They said I had secondary metasteses (sp?) growths all over my omatum or stomach covering which they described as a kind of cling film which covers the stomach and bowel area. Later Dr Lesley Dawson the oncologist to which I am assigned, used a keen metaphor: she said said the growths are spread all over my oamatum like a good sprinkling of dandelions i.e. with long roots, that some of them are big and that they are growing happily into whatever they find which means i could get another blockage at any point in time. They hope my life infusion will shrink them but there is no guarantee as the roots of many of them could be as thick as the bark of an old tree and thus inpenetrable. Mr Patterson had told me to get as fit as i could after surgery to be able to withstand the treatment, hoping the neat mend of my colon he has effected inside me (rather than the possible colostomy bag) will hold up to the battering the chenotherapy liquids and pills will give it.
I am on 6 cycles of life infusion and so far it is going well and is manageable. They began in on 27th May 2011. The first week of each cycle or 7-10 days are the trickiest. On the Wednesday I give blood at my Doctor’s Surgery which is nearby, to ensure that my platelets and white and red blood cell count are holding up. Then on the Friday I get to Ward 1 at the hospital by 10am and a friendly nurse comes to get me (this week it was Amanda) and she takes me through to a small open ward where I take a purple or green covered arm hair, the kind that one associates with old people homes as they have reclining functions, within a small row of seats facing another small row next to small table with drip holders by each one. Windows run alongside the whole of the ward so it is quite pleasant. Amanda or the nurse assigned goes through all ones recent medical history checking on the side effects of the previous cycle, which have also been checked the day before on the ‘phone. It’s a very intimate and attentive system and one feels persoanlsied and cared for. One is then weighed to make sure the drug/ body mass balance are in tandem and then one puts ones hands into a bowl of hot water to raise the veins. The nurse then gets you to sit in your chosen chair and then inserts a canula needle into one wrist or hand searching for a good vein, which can become elusive as treatment progresses as the life infusing chemotherapy flattens one’s veins and as one’s blood levels drop so does the flow and they are looking for flow. It took 4 goes and as often as one has a canula inserted (each time you need hospsital treatment more or less) you flinch: I guess there is a mental function that resists. People who have had canulas inserted umpteen times often weep or cry out. This week everyone near me, many of whom I now recognise by sight if not by name as we are all on 3 week cycles, had to have several attempts before a vein with flow was hit. Usually after 3 attempts the nurse goes to get another nurse to try. I think it is very stressful for the nurses as well as the patients. I wear gloves and scarves and lots of woolly jumpers for the trip to the hospital whateverv the weather to get heated up before hand in the hope it will have an effect! This time it took 4 goes and we had a change of nurse to Ailsa. The nurses are different each time but familiar. I guesd if they saw the same people each time they might find it very hard indeed as many of us will die that is for sure.
First one has a drips of calcium and magnesium washed down by other drips rthen one starts the main life infusion. In myt case I opt to have it doubel time i.er. slowly over 4 hours rather than 2 as it feels like fizzy lemonade is being pushed into your arm at a rate which i find painful or at least darned uncomfortable so i opt to have it slower as that is definately less painful;. The nurse always gets one a heated pad to lay one’s arm on as heat helps the infusion side effects and minimiase the pain. I have my canula and infusion on the left hand as i have a right masectomy and they have to avoid using an arm on a surgery side for any such procedures (including blood tests so my vein options are narrower than thsoehwho have twp arms available).
One settles back into the chair with the feet rest up and i listen to th Archers onmibus and Dsert ISland Discs and RAdio 4 Afternoon Plays which my wonderfiul children Fran and Tom have worked out how to put onto my i player (a freebie from Peter GabrielsReal World WOMAD celebration a few years back when he was pushing a 24/7 on stream music facility which journalist Nigel Williamson purloined for me and hime from a box beneath a table that we were supposed to be waiting to be offered at a suitable time – not soon enough for Nigel who was well away happily on free booze at the time! ). I have favourite music and i take a tuna fish sandwich and coc0 juice and a smoothie and a flask of lemon and ginger tea and sit and read the Guardian cover to cover.
My daughter Fran makes it all possible doing all the ‘front line duties’ her siblings cannot offer as they live in Lonbon (although Tom and his partner Bea have been up several times taking charge of having a bathroom put in my ground floor bedroom and Tom coming to take me home from my last life infusion which was totally weepy wonderful. Rachel has been up twice, the second time with her partner Dono, and both times with my grandson, their lovely son Kabe, which is magic – how many times will i get to see him in this life i always wonder? he is an absolute joy – grandchildren just are.
But Fran is thre main one and has been fantastic since my cancer was diagnosed. As the youngest of my three children she is the only one who lives in Edinburgh. She is a totally gifted, cool, fun vocational taecher at the Royal Mile Primary School. Very organised and practical as well as loving. She does shopping for me all the time, pops over regularly, phones me often, takes me wherever i ned to go and take me for my life infusion which is not at all easy as one is nervous befrrehand and slightly tetchy with a tendency to make a fuss about nothing and afterwards one is simply drained and i am always slightly weepy as the gravity of what is happening is brought home directly by the whole procedure- will the outscome be life or death? how much longer will i be here to enjoy my children, grandchildren and friends is what goes through my head all the time? how many times will i hold their hands and kis them and be hugged by them and vice versa – oh gosh it makes me weep to write it – and the side-effects (pins and needles in hands, feet and jaw in my case and acute sensitivity to cold and changes in temperture). Fran is my life line. It’s a huge responsiblity for her which she handles with great dignity, panache and efficiency. She was tense the other day and she told ne of course the whole situation makes her angry but she handles it so well I am so very proud of her. She and her partner Stu have just gone for a break to Budapest which will be really great change for them. They are travellers having backpacked and bussed all round South to North America a few years back and are looking forward to their first experience of old eastern Europe.
Breakfast and pill time calling!