It’s a problem getting round in a city where no one speaks English, on your own, with a gammy leg to boot. Do you arm yourself with characters on pieces of paper, to show to taxi drivers, and hope for the best, or take a tour? Continue reading
‘No problem finding your train, all well signposted,’ the concierge in Tokyo assures me. Arriving at Tokyo station to take bullet train Nazomi 121 to Kyoto in peak rush hour, we find the place teeming with people running in all directions and the boards only giving information for the next 20minutes. In Japan, few people speak English, but by brandishing our tickets at a man in uniform, we are ably directed to the correct platform. Continue reading
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!
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
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.
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.
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.’
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.
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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’.
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!
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.
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.’
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).
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.
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!
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
Serious or frequently recurring risks:
Acute – skin reaction (redness, tenderness, breakdown…severe discomfort); tiredness, oedema (very likely)
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.
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.
All the more resolved to make the most of it.
New Year’s Day
I greet 2014 with renewed hope and vigour! 2013 played a very curved ball in injury time as up until November it had been a great year for us with the move to Singapore and all the travelling to exotic oriental places.
Only a few days left of mountain magic and then back to London, histology results and radiotherapy. Wah! And Ross departs for Singapore so I will throw myself on the mercy of all my dear friends to accompany me to physio and radio. A roster has been suggested. Volunteers please!
On the plus side the wound looks good. New Year’s eve saw me tackling the cable car and lunch at the restaurant panoramique at the top with the Mitchell family; not only great to see them but to get two consultations for the price of one: David is one of Britain’s top vascular surgeons and knows the Prof, while Anne is a GP, so lots of comfort about how the pain will be bad, it’s normal, and then healing will take up to two months. A peek at my leg in full view of the sunbathing crowds causes some raised eyebrows!
However, this little expedition knocked me out and I had to retire to bed for a couple of hours; so exhausted that was fearful that I would not see in the New Year, which kicked off with apero for 25 or so chez nous…champagne and canapés, foie gras and sauternes, all brought by friends – Fenwicks, Poolers, Serikoffs, Huguette et al. My brother and his girlfriend who is having a little boy in May, are also here, and it has been wonderful getting to know Melanie and see how happy they are. New life for a new year.
We tottered up to cousin Christine’s for main course: Diego and Diane have prepared hams, and Tommy and Olivia have made sweetcorn and courgette gratins, all delicious. It is a beautiful clear night and we stream out on to the balcony on the chimes of midnight as the sky explodes in a flurry of brilliant fireworks, which illuminate the Dents and rain down green, purple and red over the village. The beacons atop the peaks are lit and dominate the skyline as red dots. The sky is full of lanterns bobbing upwards.
Then Ross, Tommy and Tom Pooler light our own Chinese lanterns, which soar up, up and away in an orange glow to meet Louise whose spirit is with us this night, in the mountain air and in the effervescent glow that lights up the sky. The stars twinkle down on us as we stand, me in my bare feet (kills the pain I say when told I’m mad), and exchange New Year hugs, kisses and warm embraces of dear friends willing this to be the year that I regain my health. If the power of positive thinking and vibes could cure cancer then I would be clear! So much love is humbling and I thank you, all my friends, for it and the support over the past couple of months and for those yet to come.
I am sorry that the last blog sounded so bleak, but writing is part of my therapy, and like an exorcism…once captured in black and white the negativity is out of my system, leaving room for happier thoughts.
Let’s hope that 2014 is a year of health and healing for all of us, filled with the love of friends and family.
6 January – Histology Day
Finally the dreaded day arrives, and Dr Fi and I assemble to see the Prof. The past few weeks have been rather unnerving, not quite knowing, yet fearing, today’s meeting.
Dr Fi is in fine form: the Prof has been busy writing for the Daily Mail on why he believes the NHS should stop training women doctors (they go part-time and it results in fewer doctors etc etc). Red rag to a bull, but she promises to zip up as the meeting is about me…
The good news is that the Prof got the clearance, as in margin, on the tumours, ie better than he expected. However, he confirms what both Fi and I already suspected, that it is a stage 3 and – here he brings his chair round the table and sits next to me, boy this IS serious – they found the tumour within a ‘large vein’.
Gently he explains this means it may have already travelled as tumour cells migrate via the blood. However, there is no point in doing anything until a scan in April as new sites will not show up until the cells have grown enough to be visible. As Dr Khong said, the cells are so microscopic at this stage, they are impossible to identify. So it is going to be a long haul. But I think I knew all of this even if I didn’t share the anxiety, so I don’t feel shocked, weak at the knees or nauseated. Just resigned and even more determined to live life to the full. As Prof says, we just have to hope that I will be lucky.
On the other hand, I am hugely cheered by his admiration of my mobility. Him: ‘You can start going up stairs properly now.’
Me: ‘I’ve been doing that for 2 weeks already.’ I am doing far better than he expected. But he gives me a stern talk on being too ambitious as a fall downstairs (which I can’t manage yet, one foot after the other) would be dangerous.
Him: ‘Have we finished the medical bit now?’ Cue for media discussion; we always end our sessions talking about journalism.
Him: ‘ Did you see I had two articles in the Mail last week?’
Me: ‘No – these are the ones on female doctors I assume. I bet you’ve had some interesting feedback. I’ll read them and give you mine if you like, but I am a feminist you know!’
He gets all excited and writes out how to find them online; he slides the paper towards me, then deftly removes the duplicate and gives it to Fi: ‘Would you like to read it too?’
Fi: ‘No thanks. I promised Vicky I wouldn’t say anything as I am here in friend, not doctor, capacity, but I have read them and I disagree completely.’ There follows a lively exchange of views, friendly yet feisty as only Fi can be… Finally he asks Fi, ‘Do you know Penny? (another of the monstrous regiment of fierce women…and a good mutual friend of all of ours). This confirms that the Prof likes women like us, despite what he writes. He wants to keep me on as his patient: ‘I keep the ones I like’.
And now home, cat on knee, contemplating the long road ahead of living with cancer. Next stop: radiotherapy, first appointment Friday.
Just to say hello and here I am minus an awful lot of calf muscle. Pain excruciating but didn’t feel a thing and surgeon seems pleased (last night). From what I can recall. I won’t bore you with gory details. Call Ross later for updates.