I’ve now been back a week and am easing back into my old routine. 45 minutes of yoga and meditation in the mornings, a daily visit to Prof Tee Tong Ang (more later, http://chinesenaturecure.com/) and then picking up on my mother’s war letters project. And doing lots of cooking for my recipe book!
5 spice (home made natch) tofu with oyster and enoki mushrooms & baby pak choi
pak choi in the wok
On arrival, as if on cue, far away from the comfort of the Marsden and the lovely Dr Miah, my leg turns scarlet on the radiotherapy burn and swells up like a balloon. Continue reading →
Back in Singapore! The flight was a doddle, a good sleeping pill saw me right for the longest bit; a speedy wheelchair transit through a thronged KL airport, where they waived me through passport control without asking to see either passport or boarding pass. ‘Excuse me, don’t you think you should look at these after all the problems you’ve had?’, brandishing my documents. Embarrassed smiles. 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 showing the burn
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 with old nanny Nicki who came round last week; had not seen her for many years
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!
Celebrating before the surprise!
The gang when I arrived at The Hill
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.
Tommy with Jake and Vicky P
The ‘oldies’: l-r Rachael, Stevie B. Lucille, Sue, Jadzia
Lulu, Dorcas, Liz
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.
my treatment table; blue blocks on left and leg cast foreground right. Try and picture me lying down, head cushioned by the head rest
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.
Healthy lunch, tuna nicoise with no toxic tomatoes and organic salad, avo etc
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!
Needles and cups all at once!
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!
Pickle likes to help me meditate
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!
Magnolia tree in full bloom, before the wind blew the petals off – Kyoto in my front garden
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.
Cupping and acupuncture can be done together, if you look carefully you can see the needles on my neck
News flash: ONLY 7 SESSIONS LEFT!
Third appointment with the good doctor. This time I have TWO rounds of cupping: the first over my needles, and then, because not strong enough, another lot…plus more acupuncture. Again painful. But, she says, looking at my tongue, I am making good progress, kidney yin much improved. I admit to transgressions over the weekend but some honour is restored during my rigourous treatments!. I ask about the energy pills and discover they are the caterpillar fungus that we came across in Bhutan: so rare that the Prime Minister told us he had started an annual auction to prevent smuggling and to regulate the market. These, however, are farmed.
When I get home, I look at my back – it looks like my Orla Kiely bedcover. Three layers of fading cupping marks…
Orla Kiely eat your heart out!
Left alone for long periods today…half-heard conversations with other patients fascinating: the male artist has lost 5-6 kgs since xmas and we have long descriptions of his bowel movements (think he has back problems); then there’s the woman who talks about ‘weeing’ and is keeping a chart…cystitis perhaps? It keeps me occupied as I lie in vague pain and stiffness waiting for the channels to clear.
It is true that, even after so much time in discomfort, I come home and feel invigorated. Mandy, and Hilary, who has come to visit, both notice.
No alcohol passes my lips, two days now…buy an organic apple juice with ginger, which is rather refreshing. Think I could get used to this – but see later!.
A new Japanese dish which combines chicken with dashi, a Japanese fish and seaweed stock. surprisingly delicious
Only 8 more sessions left, but this morning as I rush to dry myself after my post-yoga shower, I feel a searing pain on my shin: look down and it is bleeding! Overnight the dreaded radiotherapy rash has appeared. When I present to the radiographers they are surprised it hasn’t done so before, but comment that my skin is very good, and I ‘look after’ myself well. The problem is the final sessions are much more concentrated.
Later, I see Dr Miah, who is not worried; she tells me to keep up with the aqueous cream but make sure it doesn’t go in any of the raw areas. She thanks me for telling her about Servan Schrieber’s Anti-Cancer book; she now has something to recommend to her patients when they ask her for advice. I confess my forays into TCM but she is fascinated and now wants to read the blog!
Back at the TCM surgery, pony-tail boy whispers, ‘I don’t know how you can drink that tea’, as I leave after my fourth session of acupuncture and cupping. Dr Deng, though, is pleased with my progress, and the cupping marks are decreasing in their intensity. She tells me that my stagnating blood is finally on the move again, and she places needles around my rash in order to feed it with blood to help it heal quicker.
The needles concentrated around my kidneys
My kidney pulse/yin is much better now, and my tongue is a good colour. The alkaline diet is beginning to work. However the terrible tea gives me noxious wind and the energising caterpillar fungus pills keep me awake! She adjusts the tea, and lessens the dose of the pills, while increasing the frequency of Liu Wei Di Huang Wan, also known as Rehmannia 6 or 6 Flavour Tea-pills, the classic TCM remedy for restoring the kidney yin. Also known for increasing libido, menopause symptoms (ladies please note!) and boosting the immune system. Worth a go, three times a day!
The perfect lunch: miso soup with shitake and tofu; pumpernickel avocado salad sandwich and veg juice
I have been reading up about the kidney yin and TCM in general. In TCM the kidney really governs the well-being of the whole body:
Western physiology and anatomy limits its description of the kidney to the actual organ itself, TCM assigns such profound, broad significance that it is obvious that the Chinese concept of `kidney’, as the home of the `ancestral chi’ (inherent constitution) and the root of yin and yang for the entire body refers to a much vaster terrain. Dr Michael Tierra
Thus the health of the kidney is critical to restore the correct ph balance (7.4) in the body and discourages the growth of cancer cells. When the blood is alkalized, it is able to contain more oxygen, absorbing up to 100 times more than a body with a high acid content. People with cancer often have bodies, which contain too much acid, thus eating right is critical. Further, in relation to cancer, TCM pinpoints possible causes of blood stagnation, which seem pertinent in my case:
Traditional Chinese medicine holds that cancerous tumors are the result of blood stasis or phlegm accumulation or both. Qi activates and governs blood circulation. Deficiency of qi may cause blood stasis. Stagnation of qi, which is usually due to an emotional upset or affection by exopathogens, is another common factor that impedes the normal flow of blood and results in blood stasis and eventually tumor formation. A Practical English-Chinese Library of Traditional Chinese Medicine by Prof. Dr. Enqin Zhang (Engin CAN)
Many may think it is mumbo jumbo, but it has worked for over 5000 years, and I am just hoping it works for me!
* * *
The weekend finds me in Wales with old friends, Anthony and Carrie, chauffeur driven by another chum, Tara. They are the most perfect hosts – great cooks and lots of laughter; I feel a right spoil-sport as I decline various of my favourite foods – smelly cheeses, home-made chicken-liver pate; and more than a bit naughty as I accept a glass of champagne and then a glass of red wine – surely a girl must have some time off for good behaviour? Nevertheless, I have taken the precaution of boiling up two days’ worth of tea – partly out of deference to my hosts as the smell is so disgusting, but partly to ensure that I safeguard my progress and don’t find an excuse not to take the medicine! Just hope that my yin will be back in shape by the time I see the good Doctor Deng on Tuesday!
Carrie enjoying the sunshine
Anthony with the wild ponies: we went on a walk, at least a mile
Nor forgetting beautiful Crumble who was determined to give me a friendly paw on the leg
This week I have been exploring alternative therapies. Started with devouring David Servan-Schreiber’s Anti-Cancer book from cover to cover and found it put a lot of what I do every day into a good and helpful perspective, while contextualising the scientific background – lots of mice and rat experiments I’m afraid – with some good case studies.
The main take-aways are:
Inhibits immunity/influences inflammation
Activates immunity/influences inflammation
Traditional western diet
Mediterranean diet, Indian, Asian cuisine
Stress, anger, depression (unmanaged)
Serenity, joy, laughter
Social isolation
Support from family and friends
Denial of one’s true identity
Acceptance of self with one’s values and past history
Sedentary lifestyle
Regular physical activity (at least 20 mins per day)
Domestic pollutants
Clean environment
The big change in diet argument goes something like this: our consumption of sugar and foods with high glycemic index (e.g. white flour) stimulate not only the growth of cancer cells but their capacity to invade other cells. I won’t go into the science here, you can read it for yourselves, but for instance those who eat low-sugar Asian diets tend to have 5-10 times fewer hormonally-driven cancers than those with diets high in sugar and refined food. Green tea is a well-known suppressor of growth of the new blood vessels required by cancer cells to grow and explains why in Japan the incidence of aggressive breast and prostate tumours is so much lower than in the West.
Pomelo salad, with coconut shavings and peanuts: healthy eating!
Organic cabbage salad (Vietnamese)
Then there’s the recent imbalance of the Omega 3s (which we had in abundance until after the 2nd World War; in those days we relied on grass- and naturally-fed cattle, pigs and chickens) with the prevalence of Omega 6 in our diet. This is largely fuelled by the feeding of livestock on corn, soya and wheat, all of which transform our food chain from being Omega 3-rich to being Omega 6-high. This imbalance, along with the enormous increase in trans fats found in biscuits, cakes and processed foods – all of which are more inflammatory than Omega 6 in its natural state – are also linked to the development of cancer. Not only does the destruction of swathes of forest and other agricultural land for livestock feed destroy the planet, it is also aiding our own demise simultaneously. So go organic and, as I am now, avoid all meat and dairy products. A bit extreme I know, but as I need to re-build my immune system it is probably worth it until I have some good news.
T o prove the point – here is my Saturday feast this week! complete with Khmer chicken, Thai chilli prawns and Singapore noodles!
Given that I have always lived eaten like an Asian (no carbs, no trans fats or processed foods, although I have not been organic) and kept very fit, it is obvious to me that both Ross’s prostate cancer of two years ago, and my current sarcoma have been brought on by the numerous stresses in our lives, paramount being that of losing Louise, but in my case both my parents as well. Servan-Schreiber describes both experiments and case studies where the feelings of helplessness induced by depression and despair have contributed to cancer, and how steps taken to alleviate such feelings can lead to longer life and health. He also stresses that its good to be realistic without being negative; something I feel I do. ‘I’ve found that realistic attitude in almost all of the people who have survived their cancer well beyond the statistics they were given.’
The undrinkable spirulina-infested green juice!
Some people are skeptical, I am afraid, as I sip my green tea and insist on soya milk/yoghurt with my home-made granola, juice my beets, carrots, cruciform veg, with ginger, fresh turmeric (only works with black pepper), garlic and apple to sweeten. I tried spirulina once and was almost sick, so not sure how I can combine this healthy immunity-building algae! I make Ross drink it too, as he needs to keep his health up. I’m not sure he’s convinced – well poor chap got the spirulina concoction on day 1! But it keeps me busy and thinking positively and I hope gives you, my friends, something to laugh about.
Home-made granola
In the garden
* * *
Monday 24 Feb finds me going back to the TCM (Traditional Chinese Medicine) shop where the helper was so cynical when I dropped by to get some Chinese herbs for cooking. ‘Do you really believe in this stuff,’ asks the young man incredulously, his hip little ponytail wagging away. ‘Why not? I’ve got cancer and so long as it’s not poisonous, I’m willing to try anything. Anyway it’s in my Chinese cancer cookbook. And [auntie voice] do you think you should be saying such things if you work here?’ ‘Oh’ says he, ‘the boss is out so I can say what I like’.
The happy cook – with wine!
I have an appointment with Dr Feng, who is my age exactly. I have come for acupuncture but you cannot consult a Chinese doctor without having the once-over. She takes my pulse, asks various questions, and says my kidney and liver functions are weak and therefore allowing the cancer to grow, my yin is out and I must stop drinking coffee and alcohol immediately! She also refines the eating list that Anti-Cancer has bestowed upon me – no curry or chilli; no meat or dairy at all and various other things like peanuts and coconut – all too ‘hot’ (this chimes with my Ayurvedic profile, given after Louise died, so rings true). Oh no, can I really do this?
Dr Feng is rather attractive and has been here 22 years (Helena Bonham Carter comes here once a month); she owns the practice with her ex, and her two girls went to Cambridge, then one to Harvard and the other to Goldman Sachs! She is very matter of fact as she tells me to lie on the couch as I need treatment ‘front and back’. She starts on the back of the neck, it feels like she is using a blow dart to insert the needles (later I check it out and indeed it is similar to a staple gun) as she pings them in: quick swab of white spirit and zap! In it goes; some are more painful than others especially over the kidney area (she says this is because the unblocking required is severe).
After leaving me like a pincushion under a hot lamp, she disappears for 10 minutes; the pain in my back is really severe, a dull ache rather than searing. Is this doing me good I wonder, as I practise my breathing skills. Now, she says on return, we do some cupping! Yikes, I recoil as I remember Gwynnie’s back after she extolled its virtues. And crikey are they hot! She pops them on with a huge squelch, at least ten or twelve of them …I am reeling from the physicality of the treatment so far but all I can do is shut my eyes and breathe deeply!
My back after cupping – Wah!
Back she comes, phew it’s over, think I…but, no, ‘lie on front now’! Then she applies more deathly needles to my legs including on my shins, ankles and front of foot…aaargh! The pain on my bad leg is sudden and quick, I feel a lightening jolt running down and then it is gone. This is the unblocking she explains – kindly? Several more minutes pass as I lie on my back now with my pink cardi draped over my feet; there is a whispered consultation going on next door, the poor man is having terrible nightmares; she tutts sympathetically.
Primula
Then she comes in and starts to massage my bad leg, to reduce the fluid which has been building up and which Prof is threatening to syringe. ‘No need, we get rid of it naturally,’ she opines gaily. But it’s very sore indeed as she digs in round the ankle and passes her hands in smooth circles up my calf. ‘You very stiff, here, bend your knee back, move your ankles. You must do lots of exercise, yoga good!’ Ow, ow, ow is all I can splutter in response.
At last she deftly removes the remaining needles – oh no, she says wait a minute, some blood here! Dab, dab. Then I get dressed and go upstairs for my daily tea mix (see photo), which I have to soak overnight and brew the next day. ‘Might taste bad,’ she warns. I imagine it must be foul if she says this now! Plus some sachets of mushroom powders to be taken twice a day, some funny brown pills (Liu Wei Di Huang Wan to treat yin deficiency – good for weak kidneys, menopause and diabetes and combatting low immunity) and my diet sheet. Nearly everything is marked X in the BAD column – see picture, on left. Oi vey. I whinge about giving up the alcohol, although I drink very little these days. ‘But surely you want to get better? Your kidneys very weak, kidney pulse very weak, only now getting better after one session. You come twice a week until you return Singapore, we make you better.’
My twice daily ‘tea’ – pass the sick bag!
For the record the mushroom powders taste like dust, and the tea smells and tastes absolutely rank. It’s hard to keep it down, I have to drink it in one (mixed with the mushroom powder).
The list of forbidden foods with the mushroom powder drink!
In other news, I am half way through the radiotherapy. The leg is beginning to get stiff and a bit sore, but Dr Miah assures me this is normal. My buddies come and go – said goodbye to a brave woman in her late 60s who has a sarcoma like mine but in the thigh – it was so large they had a ‘guess the weight’ at the staff Christmas party (it was 2.5kgs!). She is also under Prof Thomas; the Sir Lankan lady is almost done and my new friend from Oxford with a benign brain tumour also on the home straight.
My stick seems to attract the attention of other unfortunates: the two elderly drunks with a pit-bull lurching round South End Green, greeting me warmly, ‘Hiya, how are you love? Have a lovely day’; and Joe – we are on first name terms now – the Big Issue seller, who always tells me I’m his first customer as he wishes me well too. The only exception was an old sourpuss at Belsize Park tube station who berated me for going up the ‘wrong staircase’. I shook my stick at her and said, ‘I am disabled and have cancer. This way saves me a long walk’. She looked at me in disbelief.
Well, it takes all sorts as they say, and even the grumpies of this world cannot take way from my determination to travel hopefully.
11 sessions down, 22 to go. Exactly one third through. Now settling into a routine: sometimes a kind friend comes with (thanks to Janie’s rota), or I go by myself. It was a huge relief that the tube strike was called off. The only slightly iffy day was when they serviced the machine and my appointment ran 45 minutes late which meant I battled peak rush hour on the tube. Waved my stick aggressively and seats were vacated.
Tommy with Pickle – a handsome pair
As for the leg, it is getting itchy and a bit red: slapping on the aqueous cream morning and night. Yukky gungy mess, but does the trick. By Friday night, after a busy day of various hospital appointments, including having various sun spots frozen off my scalp at the Royal Free and an hour’s Pilates, my leg was very swollen.
Miso soup with shitake mushroom, tofu…the best immunity boosters all in one!
Still juicing and making soups and immunity-boosting foods. Thanks Nina, founder of http://www.platform505.com, for the gift of Anti-Cancer – A New Way of Life which has lots of useful info for health. I am now taking daily probiotic supplements as well.
Met one of the gym trainers in Tesco: ‘Whats up with your leg?’ ‘Oh I’ve got cancer – had all my leg muscles removed’. Show him my leg. ‘F*** me, I can’t believe it, you look so bloody well’. It must be all the raw veg!
The highlight of the week has been the one-day late Valentine’s gift of a returning husband on a flying visit. He’s back for 10 days next weekend – the jobs are piling up!
Happy Valentine’s Day!
Also this week a trip to the Roundhouse with Tommy, Olivia and various of their friends to see Worst of Scottee. Scottee was a great friend of Louise’s – we first met on her 18th birthday when she was DJ-ing at Sin in her Pure Filth phase, and Scottee was doing cabaret in a red PVC figure-hugging dress and stilettos.
On Louise’s 18th birthday
After the show – a very poignant and brave retrospective on his childhood, told from a photo booth – we sit in the bar and reminisce about the days when he and Lou went clubbing and he would throw her round the dance floor – ‘she was so tiny and I, of course, am very large’. He often sits on the bench before the show and breathes in her calming influence.
With Scottee at the Roundhouse
This week’s competition winner is chief medical advisor, Dr Fi, who is also Pickle’s breeder; and Marion, who brought me back these funky yoga pants from Kenya. Both achieve photo awards!
Miso soup with shitake mushroom, tofu…the best immunity boosters all in one!
Six sessions down, five and half more weeks to go. It has taken all this time to get the treatment exactly right: after having the whole team round my bedside, we experimented on consecutive days with new stirrup positions, the physicist returned to take measurements, the blue sponges returned…and now we are back to Plan A – the blue sponges, and lining the camera up to get the oblique angle and protect the underside of the knee to prevent fibrosis.
I saw the lovely Dr Miah on Friday: we discussed nutrition (a little of what you fancy, lots of snacks to prevent weight loss). She also told me off gently for wearing narrow, if soft, trousers and my fancy patent boots. She said even if there is no pain, my leg needs air as all materials will rub against the soft underside of my knee. But I can dress up on special occasions! My next scan won’t be until June. So annoyingly longer to wait, but she confirmed Prof Khong’s advice that too early, and you won’t see anything. However, if they do spot a single nodule in the lung (first port of a call) they will chop it out; more than one – chemo. For the record, I did ask!
The tube strike made for a couple of anxious days – late or non-arriving taxis, but the journeys themselves were remarkably quick. The sessions also ran more or less on time; with Friday’s starting a minute early, and I was out in 10. Hope this is promise of things to come.
This week I have had cousin Christine from Geneva to keep me company: as well as some nice lunches, retail therapy, movies (Dallas Buyers Club, Inside Llewyn Davis and August: Osage County – see reviews on www.vickyatthemovies.net), we have been navigating the tube: walking to South Ken, change at Kings Cross and then to Belsize Park, rather liberating. Trying to get back to being normal.
Getting ready for Burma in November: pork with pineapple, tamarind, bean shoots. Scoffed while watching latest Euro cop thriller Salamander
We bought a Big Issue outside South Ken; as Christine scrabbled in her bag for money, the guy saw her new stripy pyjamas. ‘I used to have a pair just like that, except they were blue. In prison.’ He gave us a big toothless grin.
However, I think I underestimated the physical effects. By Saturday night my leg was very swollen and sore (not red or burned) and stiff. I have also had some immunity failings – thrush and herpes: surgeon Dave says I should be upfront as even doctors don’t really understand how gruelling RT can be. Depressing given my super-healthy diet: juicing every day with beetroot, carrots, ginger, greens and whatever I have from my Riverford box, plus Christine’s home-made granola and our wholly organic diet. Not forgetting my yoga (shoulder-stand, plus lots of contorted poses made more difficult by lack of calf muscle) and my latest discovery, meditation. 10 minutes a day. Judy delivered a freezer-load of Jamaican and traditional chicken soup, and Annita brought a delicious lunch. I am being thoroughly spoiled.
The Ladies rota kicks in next week (thanks Janie), and Ross comes at the weekend…things to look forward to. Carpe Diem.
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.
Sitting by the fire in the taverna
Thats what I call a moussaka!
Spoiled rotten!
They were empty, dear reader!
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!
Mike and Penny with the loyal Sugar in the hills
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.
Birthday boy!
Vibernum, hellebores and other flowers form my garden; Cara decorated in Louise’s favourite colours, form Columbia Road
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.
View from bedroom window
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…
Rays!
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.
Just in case you missed Pickle
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!
Thought we needed to see Pickle again – where else but on my lap?
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!
The metallic black mini Cooper 1.6
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.
On the wobble board!
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!
My pin-prick tattoo, with remnants of marking pen
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.
We have dates! Went to the Marsden yesterday, all by myself, armed with a stick so I look disabled and people steer well clear. Saw the lovely Dr Aisha Miah, who remembered me from the last visit. She is a tiny, but very reassuring, presence; someone you can ask all the nagging questions. Like the one about the hotspot in my groin lymph glands that the PET scan had picked up and I have been angsting about, knowing the cancer cells could have travelled. No need to worry, sarcoma cells do not become lymphatic cancers; if they do spread it is to the chest/lung and liver (not sure quite how reassuring THAT is!). So my next scan will be in April and then three-monthly thereafter.
Next Thursday (16th) I go to have my leg cast made; then Friday a localised CT scan of the leg so they can position the ray machine correctly. Then start properly 30 Jan, though I am hoping she can bring this forward a few days, so I can escape to Singapore for a couple of weeks before coming back for Easter and my first scan. Each session will take 30 mins. For the first 5 weeks they will irradiate the whole leg, and the last week and a half they will notch it up a bit to concentrate on the sarcoma area to zap any remaining tumour cells.
I have signed a consent paper, which is rather grim reading.
Intended benefits: improved survival; prevention of recurrence
Later – permanent skin discolouration; thickening of skin; impairment of joint/limb function (esp. knee joint) fracture risk; secondary cancers; lymphoedema.
She says I will need wide trousers to prevent irritation – so a visit ot Primark in Oxford Street is called for! Help! and lots of aqueous creams…
So not much to worry about then!
We had a giggle about the Prof’s views on training women doctors: I was interested to gauge her views. She said, ‘I told him he had better wear shin pads in addition to full body armour’.
* * *
Meanwhile, to help me prepare and boost my immunity and general well-being, I have started doing free weights and sit-ups in addition to the physio. I am also working my way through a lovely Chinese cookery book of recipes especially for cancer patients. Luckily we have a TCM shop (traditional Chinese medicine) just down the road for foxglove root , hyacinth bean seed and the like.
I am also walking unaided: last night went to 12 Years a Slave – by bus! – and walked up the road to the Chinese restaurant; I can do the half-mile aller/retour to England’s Lane to do shopping, and I have just traded in my sexy red mini Cooper for a rather less glam second-hand metallic black automatic. Arrives next week. So I intend to live as normal a life as possible during my incarceration in London for treatment.
Pickle loves to rub her face against my legs. See how from the front my calf looks almost normal!
I was reminded of the fragility of life last week (as if I needed reminding). On the way to Geneva airport we saw the most terrible accident; a white van with all windows blown out, children’s toys, bikes and sledges scattering the road and bank, and the family dog – a beautiful red setter – being stroked by a paramedic. It was the only living thing left at the site, but not for long. It raised its head woefully to look right at us while the vet sent him to sleep.
I am haunted by the image of that family: one minute returning from a lovely Christmas holiday, car packed with presents; the next and their lives are forever blighted.
vickygoestravelling 