weak 4

Well I knew it would get worse...this was a week when a bit of sympathy from the radiographer for my sore bum and telling me I'm doing well had me emerging from Linear Accelerator 1  visibly upset. Since then all the regulars in LA1 waiting room are twice as sweet to me as before . We've had fun too though-now Wimbledon has finished we guffaw to (how did I forget how funny they were?) old episodes of Only Fools and Horses on the waiting room TV at around 3 every afternoon.

I'm sitting like the Princess and the Pea on a pile of pillows to write this. But the radiographers all agree I am doing very well (my skin is holding out). The treatment has gone into phase two. The lymph glands are now done (the skin there is now what my old non PC granny from Cornwall would have called 'nigger brown' but it's intact). The radiation is now concentrated on the area of the tumour itself and attacks it full on and from each side. Radiation continues to work 10 days after it is administered and the effects build so I have worked out that: today I have
11 days till the end of my treatemnt
21 days till the effects cease to build
31 days till the side-effects have faded
As 11 is the easiest number to deal with that's the number I have chalked on my blackboard that gets decreased by one every day.
This week I also had a blood transfusion. My white blood cells and red blood cells are now back where they should be, I am no longer breathless when I speak and don't pass out suddenly on the sofa.
The pile of potions and lotions has grown but the things that work and that I use are

• blue bowl full of warm water , cotton wool, hairdryer, unguentum cream (basically home-made bidet). I may always do this!
• Ibobrufen 3x a day
• Paracetemol 8 per day
• aqueous cream-all the time

Christine is doing most of the cooking and cleaning and massages my feet to soothe me. Also soothing is the audiobook Corduroy mansions that Al downloaded for me and Mad Men DVD that Dave gave me and the Buddhist meditation tape that Christine gave me.
Yesterday I did something normal for the first time in ages-it was sunny and we drove to the Captain's Wife and had a ginger beer sat looking at the sea and I showed Christine the pretty house nearby I'd like to live in. Dreams Amelia...
On the way back we followed the sign for 'St Peter's Church open' and found a tiny ancient celtic church full of tiny ancient celts selling cakes, tea and plants (the bric a brac was rubbish: second hand bras and the like) so I had a bun with a mountain of glittery pink icing on it and a cup of tea while we sat on old chapel chairs in the sunshine and listened to the Deputy Chief Councillor make a speech about community. Then I  bought a bag of mixed lettuce (10p), a  yellow plant she said was Creeping Jenny but isn't(40p)-according to Al's encyclopaedia it is Garden Loosestrife,  a purple basil plant (15p), a geranium (colour and type unknown 10p)  and then we went home-real life-I love it.
This week's Spotify track is in celebration of  such delights, happened  upon by happy accident. One day Al and I were paying our annual respects to beautiful St david's cathedral and happened upon a rehearsal of  a work by Vaughan Williams, It was the most beautiful music I have ever heard by accident and in a cathedral music always sounds stupendous anyway. The work a plea for peace (written in time of war) it chimes with my vision of a more peaceful future for my lower half Dona Nobis Pacem.

this week I spent more time on the sofa



Monday diahorrea immodium rotten morning drove to hospital cycled to shop to buy dress pattern

Tuesday am sore bum like hit with hammer-crying

I wrote this shorthand on Tuesday in case things got better and I forgot the beginning of the week. Actually week 3 was not so great. The mornings when I go to the loo I have terrible pain but by yesterday I had sorted a few things out. The Thursday review radiographers gave me steroid anti-inflammatory suppositories and cream for the piles that have flared up due to the radiation and are causing much of the pain, I have started taking paracetemol, and, it sounds overdramatic but I find crying with my face in a big soft piece of fabric makes it easier. I also now use cotton wool to wipe my bum and aqueous cream-this cancer is turning me into a big baby!
I am not eating very much because of the above but, aware of the fact I need to keep my strength up in order to recover, I do eat fruit for breakfast and one other meal a day. I also award myself one bounty bar every day and as many Tesco value milk lollies as I want as a small recompense for having anal cancer..the absolutely brilliant thing is that my skin is still fine- a slight sunburnt look-the opposite of the norm-a white body with a tanned fanny and arse.
Emotionally I am held up by the support I get given on a constant basis-yesterday spectacularly with the most beautiful bouquet of flowers Lou declared she had ever seen, and I agree, from my friends at work. I was also sent a beautiful blessing.
In the chemo waiting room on Thursday I sawsomeone I knew-a (mature) ex-student-he loudly told me you had to 'watch the staff as they made mistakes' and also told me at least I hadn't lost my hair as that's bad for a woman ,that with a woman opposite me with a  cold cap on who wa obviously in danger of just that happning. I realised this man was oblivious to the effect his words would have on others as he was probably plum scared-told me he couldn't wait to get on the surgeon's table...I thought then that I wasn't as scared as him and felt lucky-all things are relative!!
I am signed off work for 6 months although can go back before once I'm well again-my GP has a system of writing prescriptions at the flick of  a mouse-he patently felt so sorry for me he prescribed two vast boxes of co-codomal before I could stop him which I'm too scared to take because they cause constipation! I'll ask the review radiographers what they think or even Dr Tom as I have a clinic appointment next Friday before they hook me up to the chemo again.
I have a facebook friend ( the real (not FB) friend of a friend) who has had anal cancer. This means I can ask searching questions about symptoms and treatments from someone who has experienced them personally-what a boon and lucky to find him-there are only 900 people a year in the UK get anal cancer. He has recommended a cream no doctor would have knowledge of the Eros Original Bodyglide Silicone Lubricant and it's even available on Amazon-I have my aqueous cream from the hospital for day to day and my lovely Radiance Skin Gel from Penny Brohn for now still.
Tony has been cheering me up by reminding me of when we went to Paris 40 years ago. I had to go round the galleries as part of my Fine Art degree course. It was all wonderful especially the mayonnaise on the mini quiches, the Tuileries  and the Art. I've never seen the Pompidou Centre or the triangle in front of the Louvre-they weren't built then-Paris has to be on my list of things to do when I'm better and I don't have to suffer a sea crossing this time-I'll go by train or even (exciting!!) plane!
We went in 1971 before Tristan was born when I was listening to the Jefferson airplane-what with all my pills they are this week's choice for my Spotify playlist

bare arses and tennis and stuff

Week 2 and a routine develops! I got into work most mornings and then home for lunch and then drove myself to the hospital every afternoon for my 3.15 appointment with Linac1 'my' radiation machine. The PICC line settled down this week so all that happened there was the weekly visit to Chemotherapy outpatients to get it  checked out and the dressing changed-that was on Thursday the same day as the radiation review when I get to talk to a review radiographer about any side effects I might need help with. The nausea is easily fixed with a grated ginger/teaspoon of honey drink and no burns yet so it was quite an easy week really. The fatigue is still the most obvious side effect, it comes over me with a suddeness that is nothing like the normal 'phew I'm pooped' kind of tiredness afetr too much housework or a day at the office. I have to lie down immediately with my eyes closed immobile. Five minutes of that and I start to recover enough to grab my ipod to force myself to stay lying down for longer by listening to my fave tunes. The reveiw radiographesr told me  I am officially anaemic and need a blood transfusion . My poor body, poisoned by the chemo which slows down cell growth , can't make enough red blood cells at the moment-I can feel it trying-I drink 2 litres of water every day (cells need lots of water to be made) and just making the cells makes me tired, not having enough of them makes me tired! Because the white cell count is low I have to avoid infection as I won't be able to fight it. Christine and I have bought beetroots and oranges etc to do the Blood Tonic recipe from Jane Sen's Cancer Lifeline Recipes. (Amazon Marketplace bargain...)
Then... the  diahorrea came on cue (2 weeks of radiation to the pelvis=diahorrea. I'm surprised I can spell it after the 18 hours I've just had!! They'd given me some pills when they hooked me up to the chemo in case this happened then but this was radiation diahorrea -was that different? I took my temperature-normal, called the hospital-they tell me the pills are immodium and to take them-it took 4 but they worked and I'm writing this after a good night's sleep. It put paid to my Saturday afternoon trip to the sea though. Christine is here doing some fab nursing care and driving and that had been our plan but we got 5 minutes from home and had to turn back. Southerndown is now on my list of things to do as soon as I'm better (it's growing this list as my life has shrunk to work/hospital /eating/Bleak House on DVD(marvellous).
Because I wanted to know (well you would..) I asked to have information on exactly what the machine did to me very day when it raised me up and made a nasty whining noise at me. The radiographers showed me the photo the machine took of my arse as it lies under the ray gun. It had a neat rectangle centred on my bum-that's what it zaps, front and back. The machine zaps my bum then rotates and zaps the front where the lymph nodes (the ones that could post cancer round my body) are. I am pleased to report that my first thought (voiced I fear) was 'not a bad arse'-happily, losing  my vanity has not been a side effect of my cancer treatment despite living in this  new world of phone conversations about diahorrea and pulling my knickers and tights down every afternoon and lying bare arse naked on a slab while radiographers minutely reposition my legs bum and thighs to line me up accurately for the zapping.
There are always others in the waiting room of Linac1 (LA1). We sit with Wimbledon on a wall mounted telly , a water machine for our dehydration and OK magazine, Country Life and The Lady  for our delectation. There's a certain camaraderie-big ladies knocking back crisps and discussing the 'private' lives of celebrities now have something quite significant in common with me. A very healthy looking  Irishman in a pink T-shirt with a shock of light brown hair asked me how many? It's the big question-how far down the being irradiated route are you? Significant because up till two weeks you won't be experiencing any problems, after that everyone is different-it's the big and frightening unknown. My dentist told me it would be five weeks of hell, this lovely Irishman was on his next to last treatment and told me (we have no shame) that his 'front' was just a little burnt and that he had a touch of constiptaion. His brother in law told me that I had the look of someone who would be fine (his theory, based on people in the waiting room watching over the previous 30 days, was that fat people suffer more because there's more flesh and folds). The thought I may be in the not suffering so much category helped me tremendously throughout this week. When you read forums on the Internet it's mostly people with horrendous problems who post. I know it will be hard but I may get away with minimal discomfort-imagine that!! I can now, thanks to the jolly Irishman.
Despite my life being all upheaved by the above one thing remains true -Life is Sweet. (I've put Natalie Merchant on Spotify)!

well it has taken me a while but here are my magic things

• the pine cone I picked up on the walk at Stourhead with  Simon and Al 
• the stone dinosaur eggs Gethin chose specially for me at Sker
• a mental picture  of Lizard Point YHA car park looking across to the ocean
• this summer's kidney vetch and thrift and a little piece of Devonian slate from Booby's Bay 
• the shell i picked up on Tenby north beach right after I wrote 'I will be well' in the sand
• the very beautiful hankie my sister gave me to hold when I sleep and the birdsong she downloaded onto a memory stick
• the blackbird who sits on the aerial over the road every morning and sings me awake
• all the love, support, sympathy, messages, phone calls, humour, day trips,  flowers 'last meals' and apple pies that friends and relations have protected me with

Last week the chemo kicked in , also  the radiation dehydration (who knew?) and on Thursday through till Saturday evening I had the Fatigue...which actually once I tuned in to it was OK-basically sudden dips in the ability to move and speak and think requiring me to lie down close my eyes and vaguely hear things around me , conk out, come to again-all smimmy perceptions and droopy limbs like when I was very little. The other thing was the nausea which started once I stopped the anti nausea tablets (hmmmm). Thursday, Friday, Saturday (Thursday the worst) I woke up very early with what felt exactly like pregnancy morning sickness. The chemo pump was disconnected from my PICC line on Friday afternoon and I felt a great weight removed (metaphorically-it's about as big as a baby's bottle) and rushed home to put on my LIMBO and have a BATH!!

Last week was also notable for my Wednesday blood test showing I was anaemic and so may need a blood transfusion  (the radiation works best if you aren't anaemic). Also my PICC line had to be fiddled with every day because my clever body is trying to get rid of it by producing lymph fluid which was making the dressing wet. The PICC line lady was quietly excited, commisioned a digital photo of my arm exhibiting this rare reaction) and obtained my permission to show it to her PICC colleagues at their upcoming conference. It has stopped now thankfully. Also experienced the emotional rawness I had read about, basically most things touched me to tears..the blog's Spotify playlist gets the marvellous 'Crying' in honour of all tears cried

 I had a brilliant weekend-no radiography no chemicals and Lou's degree show. A marvellous family and friends weekend, I had some wine (one glass of wine -felt brill!!) and lots of laughter and art , finishing on Sunday evening after a fab Fathers Day meal in the hotel restaurant (I spotted Sherlock Holmes!!) with everyone back upstairs  in T, P and J's  hotel room  playing competitive hilarious Monopoly while I did some more swimmy droopy limbed lying on the bed zoning in and out of everyone  auctioning railways stations and exacting £6 rentals -back by taxi at midnight-rock and roll!!

Chris Packham Slimming World sausages and sweet dreams

BREUGHEL Landscape with the Fall of Icarus

My subconcious is the coolest thing . I know other peoples' dreams are the epitome of boring so sorry about that...!
last night after retreating gingerly to bed with my bottle full of chemical (call the hospital IMMEDIATLEY if it leaks onto your skin) after a creepy day of chemical hook up (slightly medieval) dark radiation room with massive calibration dial and green laser beams (startlingly futuristic) soothed somewhat by supper ,courtesy of Lou, of Slimming World sausages (yes they exist and they are not made of quorn) and Springwatch-Chris Packham always makes me feel better....I dreamt a brilliant dream.
 I was off shore at the top of a tall narrow rock, land in sight but in deep water and fabulous waves were trying to topple me off. I was holding a book and it was affecting my ability to hold on so I threw it off and grasped the rock. Then I was in the air flying with Lou and Christine either side of me I knew our flying ability was about to go but I threw myself forward and down and we landed safely. I recognize a reference to the song that gives this blog its name a song which contains Joni's thoughts on Amelia Earhart , Icarus and herself who all found themselves out of their depth (in the air!) .
 I threw the book away in the dream  a reminder not to base this blog solely on all the research I have done (and phew I reckon I'm probably GCSE standard on cancer and its traetment both standard and complementary). It's got to have daft Jen (who flies around in the air and gets caught by waves ) talking too. And tell not just of the wonders of medicine and complementary medicine but talk too of magic...my old friend Wendy emailed me last night to tell me that I am to be honoured, along with others, with a prayer to the full moon tomorrow in her Pentangle group. My  next blog will be all about the magic I find everywhere that comforts me  .

 Today I woke up with the picc line looking like it had sprung a leak so I drove to the hospital (I'm going to get very good at negotiating  the dreaded Gabalfa roundabout with all these trips) -turns out my skin was protesting at the sterile dressings that keep it stuck on so I now have a special false skin layer between me and the strips-it took two nurses 20 minutes to do-the NHS is doing me proud with all this Care. Guess I'll be Running for Life next year. Off there again in an hour or two for the radiating...

I thought I'd start a Spotify playlist for Dreams Amelia which will start with Joni and continue with songs suggested by the things I think about and experience. Thought I'd put in The Swimming Song in memory of my last surf at Booby's Bay (and one of the magic things). Here's the link-let me know if you can't get it to work

hello and welcome

I'm sitting here with a thin blue tube disappearing into my arm ready for tomorrow when it will be hooked up to a chemical designed to stop my body from replicating cells -something it has faithfully done for me for the last 57 years giving me ever regenerated hair, nails, skin etc. The story of how this thin blue line  came to be where it is is already quite long.
Last October a young woman who wasn't looking where she was driving pulled out of a side road and knocked me off my bike. A few days later because my neck felt funny I went to the doctor who referred me to the hospital for physiotherapy. While I was at the docs I mentioned the recurrence of some bleeding when I went to the loo...and I guess because I am the age I am the doc played safe-anyway this March the other referral came through and I went for a sigmoidoscopy. Not particularly pleasant but a bit of deep breathing (ante natal class styley) was getting me through having a camera up my arse. Then  biopsies starting being taken and I was freaked -they had found something they didn't like the look of. Afterwards i listened while they called the cancer hospital and  they made me an urgent appointment while I sat and had my poor you cup of tea then I cycled to the sea and stared at the ocean  for a bit and went home. The results came back two weeks later. Cancer. I got given a card-the stoma nurse available to me anytime...I went home and started reading about colostomies and anal and rectal cancers .Very quickly appointments came through for a CT scan and an MRI (you lie in a tube for 25 mins with earplugs in while they say what sounds like 'wwwanoth5minuteswellduh' I closed my eyes and journeyed in my mind to somewhere I had been very happy). Lots more research -I made myself look at a Youtube video on how to empty a colostomy bag-I tried to imagine getting to a stage where I could be that person. I read books on how to eat to beat cancer, a directory of cancer resources, found the Penny Brohn clinic website and borrowed 'anti cancer a new way of life' from the library-all these resources are BRILLIANT. I started drinking green tea, roobosh tea, eating Omega 3 mix from the health food shop. Another appointment another doctor another nurse. This time she was a 'we are going to fry your pelvis front and back' nurse. The prognosois was brilliant-They found the earliest cancer they have ever seen-it doesn't show up on the scans, it's microscopic, hardly there at all . They are 95% certain that I can be cured. It's anal cancer-it's rare-they can't say why I have it-it was just bad luck. Bad Luck? There must be a stronger term  than that for such situations? Astoundingly bad luck at the very least.

The treatment for bad luck anal cancer ...takes the form of a chemical and radiation  attack on the site of the malignant cells and nearby lymph nodes ....unfortunately because the cancer cells is  me it will hurt me too-and it starts tomorrow.
4 days chemo 5 weeks radiating my pelvis, four more days chemo at the end-standard procedure -no need for the dreaded colostomy but the radiation comes at a price-side effects could be horrendous. The temptation to not do it is quite high-maybe if I ate enough oranges it would go away? Perhaps some meditation would still my hidden stress and the cancer would retreat and disappear? I've read some fab books ...eating well, meditating may work. Thing is I already have a healthy lifestyle-I exercise I cycle I swim I eat real food not processed, I have had a lot of people say it doesn't seem right i should get cancer when I do all the right things so...reckon the thin blue line will have to start feeding chemicals into my body tomorrow.

So this blog will be the story of my treatment. Sometimes it will be about how I feel sometimes it will include gory medical bits. It will include the things I add in like meditation, making smoothies with the juicer Rowan has lent me, my attempts to find an attractive plastic bath to sit in when the radiation burns are so bad I'm on morphine (yep it gets that bad)-why are british Sitz baths ugly old person medical applainces when in America you can buy these pretty ones (silly I know but it would be a happier Jen sitting in this one rather than this one
I guess this blog  will interest fellow sufferers mostly, hopefully some doctors, perhaps some strong stomached friends and relations...

• website that best explains anal cancer is the Macmillan site
• Joni Mitchell's beautiful song about wild and impossible dreams Amelia