Sitting at Heathrow airport after a couple of months back in London. What should have been a joyous time of moving back into our old house, happily renovated and divided into two flats, has been a nightmare of gruelling proportion, admittedly interspersed with some high spots. Best of all was spending so much time with beloved Tommy. Continue reading
An update on my health for my loyal followers.
On the morning of the book launch, I went and had my quarterly chest x-ray and annual MRI on the remains of the leg. Then I promptly forgot about it – I feel so well – until yesterday. Continue reading
A few days ago I outstared a tiger and gazed into the blue eyes of a leopard. For the past seven years my friend Cindy and I have been trying to find the mythical blue-eyed leopard of Mana Pools, Zimbabwe, only to find he has moved to India. Seriously, the blue-eyed leopard is extremely rare and seems to be found only in India, which is where we came across Nilu (blue in Hindu) and his yellow-eyed twin, Pilu. Continue reading
Five days in Bangkok leave me breathless, yet full of energy! We are here to meet up with Dr Fi and her family, and also to catch up with another old uni chum, Patrick Brooks, who has been living a Somerset Maugham-type of existence for the past 30 years or so (actually an ex-dip and now consulting for the EU, trying to teach them diplomacy – the EU that is, rather than the Vietnamese or the Thais, who seem perfectly good at people skills if you ask me). Continue reading
The radiotherapy is complete! Six and a half weeks or 33 sessions, 8 concentrated at the end. To quote Dr Miah: ‘She has tolerated treatment extremely well. She demonstrates stage 1 erythema [common side effect of radiotherapy treatment due to patient exposure to ionizing radiation] and no evidence of skin breakdown…no evidence of lymphoedema. In fact, she continues to improve her muscle tone and strength…causing hypertrophy in the residual posterior compartment muscles’. We formally named my new muscle Victorious.
My leg is nevertheless very burned and covered in raised blisters (see photo); puffy round the knee joint and stiff. Exercise and stretching does help.
Tommy came round to celebrate the end, and we had a glass of champagne, it was about 6pm. ‘I’m very hungry’, he kept saying, ‘shall we go eat now?’ But I was tired and he couldn’t get me moving, also I felt it was too early. Having studied the menu at The Hill, his chosen venue, I found little I could eat, so was making other suggestions. No, no, let’s go the Hill. Eventually at 7, a decent time for supper, we stagger down to the pub; I push open the heavy door and first thing I see are Louise’s friends Dot and Daz. Funny coincidence, think I, smiling at them, then I hear people shouting surprise! surprise!
I look around, and assembled are a mixture of my friends, Louise’s and Tommy’s – family friends you could say – all waiting anxiously for me to appear. They had been waiting since 6.15 but Tommy couldn’t get me moving! Wonderful, warm feeling, I was too happy to cry, but felt close to tears. As Tommy said in his FB event ‘She’s not the kind of person who would organise a party for herself, and we think that quite frankly she deserves one for everything she’s had to deal with!’ So a huge thank you to him, Dot and Lulu, who invited everybody. It was a moving moment for me, a special milestone in my journey, one of the love and affection that we all need to get us through the tough times.
I am now signed off with Prof Thomas (thrilled with my new muscle growth) and MRI scans booked for June. At my final debrief with Dr Miah I had urgent questions regarding my planned visit to Japan early April to see the cherry blossoms; several people have questioned whether it’s safe or not after the Fukishima disaster, but she says its fine for such a short period.
Another pressing question concerns flying: need a ‘fit to fly’ note for insurance, and worry about the stockings and my leg. Got to wear the stockings, she says. But how am I going to get it over my sore leg? Just slather your leg with aqueous cream and put it on. I try hard not to giggle as I have visions of rolling it on, durex-like, over my engorged organ, and hope she isn’t thinking the same. I am almost tempted to crack a joke, but think better of it.
I look back over the past weeks. They went quite fast in the end. I had a good little routine going, wake early, do my emails, film reviews, blog writing etc, nice cuppa from Mandy (latest one is green tea with toasted rice); cook up witches’ brew for the day and make veg juice; breakfast of home-made granola, blueberries and soya yoghurt; 45 minutes of yoga, free weights and mediation, once a week Priti (thanks for the Ayurveda cookbook!) comes here to do proper yoga with me; shower and dress; taxi to Marsden, sometimes with a companion, most often not; have treatment; meet friend; go to lunch (increasingly difficult recently as eating out is a nightmare: everything seems to have cheese, tomatoes, shellfish, or chilli in it, and a piece of fish is too much at midday!). Go home via organic shop to pick up supplies; rest; twice a week go to Dr Deng for one and half hours in the torture chamber; once a week to Pilates; and the evening either receiving guests, cooking or going out. Bed as early as I can – Dr Deng says I must be in bed by 9, but I’ve only managed that once. As you can see, it’s hard work living with cancer.
My visits to Dr Deng have their own routine. I sit down and she checks my pulses. Encouragingly over the weeks my kidney yin is much improved, due to the various tablets and cleansing teas I have been downing religiously. I am –almost – getting used to them. Then she invariably says:
‘Show me your tongue? Good, brighter, much better, but still not perfect, should be white covering. What you eat? Dairy? Meat? Alcohol? Chilli?… ‘No, no, no, I’m being very good.’ I daren’t tell her about my occasional weekend glass of champagne; anyway I think I’m doing brilliantly on the no alcohol front. ‘Got to be very strict with diet, maybe for many years [this is bad news]. Energy yang still weak’. A special needle in the stomach for that one!
This is not unexpected due to the radiotherapy but requires many needles to unblock the channels; she tells me that I have to have frequent treatment because of the radiotherapy, and the fact that my whole body is so much hotter now than normal. Also that, as a result, the needles hurt much more than usual. I had wondered why the needles seemed to get progressively more painful as they are pinged into my poor old body. The kidney area is obviously sore, but the bony areas on the top of the foot, the collar-bone, and the ones at the base of the neck are particularly irksome. Once she put half a dozen needles into my head! And then I had to turn over and lie on my back while they were still in!
Dr Fi, who has a professional interest in all of this, asked me how I feel while I am being treated, how do I cope, as it is painful. It’s a question I ask myself as I gaily jump on the bed and say, ‘Bring on the torture!’ Dr Deng laughs, ‘You very brave, very strong’. I try to relax the muscles as she deftly passes her hand over my back and pinpoints the meridian she wishes to unblock. The thing is, you never quite know where its going to be; I listen for the rustle of plastic as she opens each needle; it’s the only way I can tell when it’s about to stop! Another pointer is when she checks the pulse, but sometimes she still does a few more!
‘Rest now,’ is the sign of closure as she dims the lights. I feel like a giant butterfly, on a collector’s board, pinioned and unable to move. Each tiny movement – once I tried to see my watch – and a shooting pain travels down the channel, like an electric shock. It is a form of paralysis. So I close my eyes and try to meditate, breathe deeply, think of nothing…and sometimes I doze off. However, sometimes the channel unblocking and the needles cause a sharp pain; similarly the cupping, while not exactly painful – apart from the time she cupped my lower bad leg (ouch!) to try and get the circulation going, and thus the healing, is uncomfortable. The massaging of my leg is, however, excruciating, especially the soles of the feet. ‘You try reflexology in Singapore, very good’ she says gaily. I am not so sure!
So why do I keep going back? Well, I sincerely believe it’s doing me good, that my lack of side-effects from the RT is at least partly attributable to the holistic TCM approach. It is also a scientifically proven phenomenon, The Common Sense Approach, pioneered by Professor Howard Leventhal, where ‘patients’ perceptions and interpretations of symptoms and function affect treatment choices and self-management for chronic conditions’ (Wikipedia). In other words, it’s about taking control of your illness and making your own choices in management. People like me have the best survival rates, and that’s a fact!
It does take dogged determination though. Pony-tailed Joseph tells me he admires me for the tea ‘You very brave, how can you keep taking it?’ He says I am the bravest person he knows, as only three patients take it, and few continue as I have done!
Meanwhile, I am preparing myself for the off. Friday will find me aboard Malaysian Airlines – oh yes, I will be eyeballing the pilots and crew to make sure they are not fanatical types – and Saturday back in Singapore. I have already booked an appointment to see Professor T T Ang. This link not only shows how eminent he is, but is also a succinct explanation of TCM http://www.unspecial.org/UNS680/t21.html. I also have a yoga teacher coming Tuesday and am debating which Pilates studio to sign up to, there are so many.
The journey will continue, on another continent and, this time, with some real travel. The cherry trees of Kyoto beckon.
Cyprus sojourn a great success from the moment I was wheeled off the plane. Despite the weather being less than kind – only two out five days sunny and warm – we had a lovely time. One day we went up into the mountains and found an eccentric tavern hidden down a side street which had a huge display of whisky bottles and where we feasted on delicious moussaka, watched by a funny little dog.
On another we braved the inappropriately-named Malindi Beach Bar for oysters and the grilled squid with the Chief of Staff of the Cyprus Peackeeping Forces, an old chum of Penny and Mike’s. A rainy day even found us in Zara buying sweaters!
Penny and Mike are perfect hosts, from the kettle in room and four varieties of tea, healthy breakfasts and lunches made from the freshest of Cyprus fruit and veg, the roaring fire and a fine array of champagne and wine. Their house is set in the hills, just outside Limassol, which is a grey and messy sea-side strip of a town, rather down-at-heel at this time of year. The Russians are all gone, apart from in the Four Seasons, where we went for dinner one night. Friends Roma and Mariana had stayed there a few years back – was reminded of this as they cooked me a wonderful supper the night before I left. The girlfriends are rallying round!
Before I left, we celebrated two other significant events, Tommy’s 26th birthday in the heavenly Singapore Gardens, and a visit to Little Lou’s Bench with her dear friend Cara.
The week was full of coincidences: on the way out at Terminal 5 I bumped into an old friend Roger Hooper, a wildlife photographer who had been with us to Mana Pools. He was a useful and charming bag-carrier. On the return flight I sat next to a woman and we got chatting, as you do. Turns out she was half Chinese, brought up in Malaysia, had lived in Barbados, now lives in Cyprus, but had worked in Deloitte, her daughter had worked for the previous Black Rod (as was Mike), her husband and family are Jewish but, most strangely of all, she was in recovery from lymphoma and as going to London for treatment. We had a lot to discuss! To cap it all, yesterday as I waited for my abortive – yes, see below – radiotherapy treatment, the man next to me had a brother living in Pyrgos, which is the very same village in Cyprus where Penny and Mike live.
I come back refreshed and revived and ready for the start of the six-and-a-half week slog. To take my mind off it, and because my juicer and Riverford veg boxes had arrived the previous day, complete with Seville oranges, I spent the morning making marmalade. I had only just bottled the last jar when the taxi came…
As usual everyone at the Marsden nice and kind. After my start-of-treatment briefing, I waited and waited (hence the conversation with my neighbour, also waiting. The most common question seems to be ‘what time is your appointment?’ I was asked this three times…I have decided I am going to fill this time profitably: I have re-ordered my daily Guardian to be home–delivered; and I am going to suss out who all the people are being treated. Very little English was being spoken, which I thought was interesting, as this is the NHS, not a private hospital. Although there are one or two private patients – not the norm – such as myself.
By the time I am invited into the room, we are running 40 minutes late. I put my leg in the cast and Kirsty and Anisha explain that they will align everything, test the machine’s movement radius (it has to go round and under my leg to zap it from several angles) take some photos and then ping! The treatment itself is 7-10 minutes. Sounds OK, think I. How wrong could I be? After admiring my pedicure, we make small talk including, Me: ‘How many leg sarcomas do you see?’ Answer: ‘This unit only deal with limb sarcomas so we see many, from all over the country’.
So an hour later, I am wondering if they have ever seen anyone with two legs before, as they cannot work out what to do with my good leg – we try the spongey mats (no good as they can’t align the machines through them properly), next two different stirrups, which remind me of visiting the gynaecologist, and then senior radiographer supervisor Mary is called into consult. Whisper, whisper, whisper…meanwhile my leg is firmly clamped into the vice-like cast and I am trying every variety of yogic breathing I can recall: ‘observe your breath’ I keep saying to myself, ‘in 1,2,3,4,5; out 1,2,3,4,5,6,7,8,9,10’. To no avail. My leg is on fire. Glad I took the tramadol, even though it doesn’t seem to have worked!
Finally they admit defeat and I am asked to wait outside while they consider the options, while not lessening the efficacy. This includes re-planning the whole treatment. ‘How long will that take? I’m booked to go to Singapore on 21 MArch,’ I wail. Nadir.
Mary re-appears after 15 minutes, having seen Dr Aisha, who said ‘She has a flight to Singapore’. Phew – we are on the same page! It is now 5.15, two hours after my appointment time. In fact the treatment plan does have a Plan B (why they couldn’t find it on the system is a mystery), which involves zapping me from a different trajectory so the good leg is avoided. They will do this tomorrow at 3pm in order to get time to re-calculate everything. So bang goes physio and probably my weekend pre rush-hour escape from London to Doctor Fi’s for the weekend.
All I can think of in my frustration and misery is the large G&T waiting for me when I get home. But joy of joys, there is the added bonus of a gorgeous bouquet from friends Anthony and Carrie – she has had radiotherapy too (and the rest) – but now well and happy, and knows what a girl needs to cheer her up! The evening only gets better; other friend Philly and Sandra arrive with a four-course meal: home-made soup and smoked salmon, followed by cod with spicy lentils and a Pavlova! They announce a competition to see what you need to do to get a blog mention. Well done Ladies!
The past 10 days have been rather depressing, waiting for things to happen. I feel like I’m in a waiting room – for death. Morbid I know but limbo land is no fun. Two weeks for radiotherapy to start and another three months until the first scan, which will indicate whether the cancer has spread. And in trying to maintain a brave and smiling outward face while struggling with inner fears, the bigger things can be put in perspective but it’s the little things that get blown out of proportion and are very upsetting. So if I ever explode at something minor, it’s not that thing that is the problem, it’s the wider challenges I am facing.
On the plus side, I have been doing some nutritious cooking (Tom Yam soup, steamed chicken, fish curry, and now about to go Japanese) and have been to the movies twice (12 Years a Slave and The Railway Man – see what I thought on http://www.vickyatthemovies.net). I also had a moment of inspiration and exchanged my lovely red-hot mini for a slightly newer, automatic mini cooper. But black and not so dashing. Today I drove to the hairdressers at the O2 centre, where I had some good therapy: thank you Joe and Eli! Mani/pedi next week!
My friend Cindy in Mumbai has sent me a book on yoga for cancer, and I am determined to learn how to meditate and do some simple poses. I think it will help. My physiotherapy – Pilates – is energising and I now have my own wobble board and special exercises to add to my sit-ups and weights. It’s quite hard work though; Tommy was most amused when he took this picture.
My mobility is improving daily and the pain is diminishing, so I have almost stopped taking the tramadol and paracetamol, only taking any when I feel pain. But for some reason this week I have been getting exhausted and energy levels are low. My weight seems to be going down and then regaining the 55kgs, whatever I eat. I find this worrying. Of course I am angsting about the impending radiotherapy, and now the little insidious niggle of the histology results and the mental picture of those nasty little cancer cells whizzing round my body. It’s all about keeping my immune system high so I continue with the healthy diet and exercise; I’m sure feeling down doesn’t help though. I am learning it takes (too much?) energy to be upbeat, cheerful and superwoman. My new resolution is not to let anything or anyone annoy me. Challenging!
Two appointments at the Marsden this week to make the cast for the radiotherapy and then to do the scan and make the aligning tattoo marks on my leg. The cast is necessary to keep the leg in place so that the rays can be directed to the exact sites for treatment. I go into the ‘mould room’ and lie on a flat operating table; I feel like a fakir on a bed of nails! Then my leg is elevated but only supported by the ankle, and they heat up a large sheet of plastic in a bain marie, which emerges like a giant gelatine leaf, and which the technicians then press round my leg until it is a snug fit. All sorts of adjustments are made and then a wait for it to harden. Meanwhile my leg is in agony as there is no support for it and of course I have no calf muscles so the quads are in overtime. They make a small spongey cushion to place just above the knee to help, but it’s not terribly effective. Sadly I am not allowed to photograph.
Back the next day for the scan. By the way all these appointments run on time. Another cheery bunch of staff. Back on the bed of nails, but with a large scanning machine and my instrument of torture is fitted. Oh dear, it needs adjusting! I am dreading they may have to re-make it but, no, they can heat it up and stretch it. It is then stuck down by Velcro to the plastic sheet with an outline of my measly leg drawn on it; more Velcro has been attached to hold the mould in place. Simple but clever. But all this fiddling around is taking its toll and my leg feels on fire, and we haven’t even begun the scan. By this time, I am wracking my memory for my yoga breathing (alternate nostrils) and counting and observing my breath to try and make the pain go away. It passes the time at least.
It’s not over yet though, as they have to make a couple of tattoo marks to align the cast. Blob of black ink followed by some scratches – not at all painful, although they have to re-do one of them. At last, it’s all over, 45 minutes later. I’m told that the treatment won’t be as long. I hope not, as I don’t think I could take that pain daily for 6 ½ weeks!
To add insult to my injuries I get ripped off by the cab home; and when I go on the C11 to my physio, no one gives me a seat! Wah!
On a positive note, to counter all this misery, I have booked myself to go to Cyprus for 5 days – air miles in business class – to stay with lovely friends Penny and Mike, who will pamper me and cheer me up. She has been through it all – surgery, radio and chemo – so knows where I’m coming from.