vickygoestravelling

my journey to health and well being via exotic destinations

Tag Archives: The Royal Marsden


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in which we attempt to encounter two types of ray

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Orange trees in the garden

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.

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Sitting by the fire in the taverna

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Thats what I call a moussaka!

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Spoiled rotten!

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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!

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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.

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Birthday boy!

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Vibernum, hellebores and other flowers form my garden; Cara decorated in Louise’s favourite colours, form Columbia Road

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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.

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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…

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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.

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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!

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Flowers and my marmalade – organic of course!


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in which I get measured up for my cast and try to look on the bright side

Thought we needed to see Pickle again

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

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!

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

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.


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in which we talk radiotherapy

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.

Pickle loves to rub her face against my legs. See how form the front my calf looks almost normal!

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.

All the more resolved to make the most of it.


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in which I have my ‘stitches’ out

my Indian amulet from sculptor Jake Harvey

my Indian amulet from sculptor Jake Harvey

I have been quiet the past few days – nothing much to report. Leg has been aching and tingly all at the same time. I am told this is all the nerve endings waving around madly trying to re-attach themselves. I am walking round the house unaided, but take crutches when I venture out, more to keep people away from me!

As well as receiving welcome visitors, I have been active: two trips to the movies (see http://www.vickyatthemovies.net for my reviews of The Hobbit and The Hunger Games); two visits to the physio – I am doing a form of Pilates to pinpoint the glutes and the thigh muscles (so painful that one exercise made me bleed behind the knee); some Christmas parties locally; and one at Art First, where the Patrons and Artists had put together a wonderful Christmas Stocking full of loving messages, original paintings, poems, an African necklace, knick-knacks,  and even a bottle of organic apple juice. All have contributed enormously to my spiritual and mental well-being.

my Xmas stocking courtesy of Art First

my Xmas stocking courtesy of Art First

However as the time draws near for my appointment with the Prof to cut the clips, I begin to feel nervous; the night before I sleep badly, worrying about the histology and whether they will find something new which might require different treatment – heaven forbid! Also about confirmation of the clearance – whether he managed to get a good margin round the tumour. Sadly there is no-one beside me to poke awake at 3 am and confide these anxieties, only Pickle as a comfort blanket.

my guardian angel

my guardian angel

As Ross is on a plane,  chum Hilary accompanies me as scribe and ears.

Disappointingly the histology is not back yet – apparently it takes longer from the Marsden but Prof is not unduly worried. He is very pleased with his handiwork – lovely, clean ‘perfect scar’ and no sign of any infection or swelling. He picks out every other clip – not quite as painless as people lead you to believe: I emit an ‘ouch’ every now and then. ‘It doesnt hurt, at all’, says he, to which I reply ‘You’re not the one having your leg attacked!’.

There are only two things that are important, he opines. One is your leg and two is my reputation. I correctly hazard a guess as to which he thinks is more important…we laugh.

On the clearance issue, he admits that, while the tumour was self-contained, it was very close to the neuro-vascular bundle and he cut as close to the surface of it as he could without damaging it and my leg permanently, thank goodness. He confirms that the gastrocnemius and soleus are completely removed and the Achilles is only attached at the bottom and not at the top. It is therefore quite remarkable that I have as much up and down flex in my foot as I have. But I must exercise this movement more if I am to walk properly. As he seems unconcerned by the histology – or lack of it – I decide I must follow his example and forget about it until January.

But the best news of all is that, once the rest of the clips are removed on Saturday, I am clear to fly. I am so thrilled I forget to ask for more painkillers –  only realise as I am floating away in a cab – and have to  try and get to the GP instead!

I will post a picture of my leg once it is restored to its pristine self.

Vicky at the movies!

Vicky at the movies! NB 3-D glasses….


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in which I go home

vickyathome

Here I am at home with my little friend Pickle, who has not left my side.

I am walking well, can manage stairs, but have to rest/elevate the leg until staples come out Thursday week. We are planning on leaving for Champery on Sunday 22 and staying through the New Year. Radiotherapy will begin mid Jan.

For those who keep asking me about what I will do about the hole in my leg, I cannot even contemplate anyone cutting my leg open again. If there is no therapeutic gain then cosmetic pain is a waste of time. I wouldn’t cut my face open for the same reason.

Ready for visitors and may need help next week with getting to/from physio as Ross is going to Beijing Mon -Thursday. Volunteers? It’s only round the corner in Heath Hurst Road.

Thank you so far for the visits and the thoughtful gifts. I have a nice leg cushion,courtesy Marion, a magenta cashmere blanket  (Tommy), which I can tuck up under and lots of reading materials, flowers and tempting morsels. The chicken soup is arriving on Thursday, thank you Judy in advance!  Under my pillow I find my worry family, which is a comfort.

I am feeling very upbeat, just in case you are wondering! As far as I am concerned the tumour is excised and with it any future issues. Of course I will have to have quarterly scans to check the other soft tissues for hot spots; after two years the stats say I am 50% clear, and after five, 100%. But I don’t think like that. Now all that matters is for the leg to heal and for me to get on skis again. Not this Christmas, I hasten to add, but certainly next year. And those trips to Mana in July and Raja Ampat in October look very tenable. Carpe diem!

my Mayan worry family, given to me by Oliva

my Mayan worry family, given to me by Olivia; anxieties are transferred to them while I sleep


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in which I begin the long road to recovery

Me in the botanic gardens - just because I like the picture and it might be one of the last times in a summer frock!

Me in the botanic gardens – just because I like the picture and it might be one of the last times in a summer frock!

So here I am sipping champagne in BA Club Class. My leg is supported by two large blankets and I’m feeling pretty chilled.  Before I left for the airport I gave myself the second tummy jab – piece of cake! Decided that in the scheme of things why be scared of one tiny injection? Though trying to get the needle though my extremely tough epidermis is – literally – harder than I had anticipated, but pain there is none. I am a tough old boot, remember.

Ross cannot be with me today on the first part of my journey to recovery; he comes on Tuesday. Too much to do to at work before he leaves for a month or so. It’s hard saying goodbye to him, even for a few short days. But the thought of the other man in my life, son Tommy, waiting for me at the other end, is cheering.

The worst moment is going through security when, despite my wheel chair, everything is of course scanned. My syringe is nestled snugly next to the oxycontin, a controlled drug in Singapore, and my sleeping pills, aspirin and other emergency supplies. ‘Madam, we have to check your bag.’

Here we go…but the expressionless guard pulls out my jewellery bag and peruses it carefully. It is stuffed with Omani silver necklaces, beads from Bhutan and Somali gold…I surreptitiously take my handbag with its contraband onto my lap while she does this and we sail though. Phew!

On board the Singaporean steward has been charming and solicitous. I pop half a sleeping pill after a glass of champagne and sleep like a security guard, only to wake up 3 hours later. So off I toddle to the tiny cramped loo and prime my syringe for another jab, as prescribed by the doc, take the other half of the sleeper and fall asleep immediately.

I feel very strange the day I leave Singapore. I can’t help but ponder if and when I will be back. I know ‘If’ is not positive thinking, by my leg has been so painful the past 24 hours and seems to be trying to burst out of its stocking. As I give myself a mini pedicure, and slather on the Jo Malone lime and basil, I wonder if my left leg will ever receive such a treatment again.

The last picture of me with two perfect pins (Patrick Mavros eat your heart out)

The last picture of me with two perfect pins (Patrick Mavros eat your heart out)

I look around the flat for the last time, which we have made our own with favourite pictures: a Barns Graham, an Eileen Cooper, a pair of David Prices (chosen by Louise), a Margaret Hunter sculpture and our latest additions, a couple of Indian granite Buddha and Vishnu heads. We even have mementos of Mum – her favourite Arab Chest and a pair of fine Omani copper coffee pots. The words of the song pop in to my mind: ‘When will I see you again?’

As if in sympathy, two little sunbirds visit us today, male and female. We decide to change the blog header to reflect the symbol of hope and Louise that they represent. Then, in the middle of lunch, a massive storm breaks and it pours for 5 hours, so heavy our lift lobby is flooded.  ‘Singapore weeps at my departure,’ I tweet, ‘I may be some time but unlike Scott, I will be back’.

*                      *                      *

Now back in London, it’s 2 am and, despite taking a whole sleeping tablet, I can’t sleep: yesterday the mix of drugs, the long flight and general build up of stress left me feeling queasy and exhausted. I couldn’t even stay up to watch the Strictly dance-off, a treat I have anticipating in my sojourn abroad.

Dear Tommy drops in and stays all day, cooking a delicious late lunch of cod, crispy chorizo with pea and spinach puree. How spoiled! The only bad news today is watching Liverpool lose 1-3 to Hull in a lacklustre game, which has son throwing cushions around the sitting room (he’s 25!). His girlfriend has brought me a tiny bag containing Guatemalan Worry People. The Maya Indians put this woven sachet, containing 8-10 tiny figures, under their pillow at night so that the worries transfer to them. Despite the early hour I am feeling remarkably fresh and whole lot less anxious than last night, when I felt very tearful and afraid for what today has in store.

The other highlight of the day is an exchange of email with Prof Khong. He will be amused, I tell him, that I have managed to inject myself.

He replies: ‘I was very sure you would give the injections yourself given your determination and decisiveness. You remind me of Helen Mirren in Prime Suspect. If I may, I shall keep updated through your blog as well.’

So Prof Khong if you are reading this, you made my day!

*                      *                      *

Morning brings the darling Lewins at 9 am with chicken soup, guineafowl casserole, and chocolate cake! By 11.15 Dr Fi, now taking on Auntie role, has arrived and we sally forth to the Marsden in a cab, after greedily devouring the soup.

I have a really good night’s sleep with my little worry people under my pillow and feel refreshed, though still in great pain. Of course we arrive far too early so have a cup of much needed coffee opposite.

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much-needed coffee while we wait anxiously

Checking in to the Private Out Patient wing of the Lister/Marsden in the Kings Road, I realise that, in order to avoid any confusion as to my identity I need to become Victoria Cattell as per my insurance. In Singapore, I was interrogated, Gestapo-style (You Unwin or Cattell? Need to change wrist-band and sign all documents again…) while on the trolley waiting to be wheeled into the operating theatre. I’m afraid I completely lost it!

Unfortunately this completely throws Professor Thomas and we spend the first 10 minutes of this precious appointment being administrative, changing my names and numbers. Whether it’s this or a bad morning in theatre, I am disappointed that he has not read the files and reports I had sent in advance. There are two terms, he says, I need to become familiar with: the ‘powerhouse plantar-flexor muscles’, which comprise the soleus and the gastrocnemius, and it appears the cancer is in all of them, putting large amounts of muscle tissue and movement at risk; and ‘clearance’: the amount of tissue they will have to cut out to prevent spread.

It is customary for surgeons to want to do their own path and histology, and this is going to cause further delays: I had hoped that we would get on with whatever almost immediately, but no, the first offer of an operation is over a week away. Slightly horrified by the thought of further hanging around, not least because of the pain, I ask myself what DI Helen Tennison would have done, and plump for sticking my neck out at the risk of unpopularity! Fi the while has decided not to let on she is a doctor, just my PA, scribbling frantically throughout the consultation. That’s what good friends are for! As I tweeted later, she was ‘a brick’ the whole day and I don’t know what I would have done without her comforting and wise presence.

Pointing out I had hotfooted it back specially, we manage to negotiate a date for this coming Friday 6 December, provided he can get the path completed. He kindly arranges an appointment with the radiologist at the Marsden for that afternoon to speed things up, and writes a prescription for more oxycontin and anti-coagulant injections.

The prognosis is good he says. ‘What prognosis, my leg or my life?’ He laughs, ‘Oh your life should be fine, and so should the leg…that’s what I’m here for’. Although as I later learn my leg will not look the same – withered and horrid to start with – and I will always walk funny. ‘No change there then, Mum,’ quips my lovely son.

Cheered by this yet dismayed by the thought of more time-killing, we stagger out to find a stiff G&T while we wait for the radiologist. We decide to try and get the prescription in the chemist opposite the pub (the same one we went to before my father’s memorial service at the Chelsea Arts Club, just last year). Oh no, they can’t dispense oxycontin as it’s a controlled drug and he’s written it on the wrong prescription! So they suggest we try the Marsden, where we have the same problem, even though the Prof is one of their consultants. Even worse than Singapore, where they insisted Prof Khong fill in my address himself on the prescription before they gave it to me! At least that didn’t take three hours!

Dr Aisha Miah is young and petite and absolutely charming. We click immediately, and we admit that Auntie Fi is in fact Dr Fi, and we therefore have a very grown-up discussion about my leg.  She answers all the questions we forgot to ask in all the shemozzle over my split identity. Like: how long with the wound be? Several inches so they have good access; how long will I be in hospital? 4-5 days; how long in between op and radiotherapy? At least 4 weeks (Yay, maybe I can go to Champery for Christmas and New Year!); how long will the radiotherapy last? 6.5 weeks, the first five being ‘conformal’ with the last week-and-a-half being intense. This to preserve the lymphatic drainage system and prevent lymphoedema later on; how quickly will I be on my feet? He gets you up straight away – be warned! Will I need chemo? No, even if tumours elsewhere are detected later on they will be treated as localised lesions.

She also gives us some statistics: 70-80% of tumours as dealt with successfully by surgery; a further 10% respond positively to radiotherapy, leaving about 10% with a bad prognosis rate. This is very good news. She also writes out a new prescription!

However, on examining my leg, she is concerned at the position of the tumour and re-visits the advantages of radiotherapy pre-op, which means 6.5 weeks of 5 times per week. Then the burns have to heal, another 4 weeks or so before the operation. This is mainly because of the proximity to the vascular and nerve bundles, but she and Prof Thomas need to sit down together and look at all the scans properly and will tell me on Wednesday evening which route they will take.

I had hoped for more clarity by this stage and am naturally a bit frustrated I don’t know which way this is going, although I realise its crucial to get it absolutely right.

I will therefore sit at home like the Queen of Sheba, being waited on hand and foot, catching up with all the Borgen and Homeland episodes I’ve missed, and await the final decision.  The most wretched thing is that the booze and the drugs don’t go together at all – feel queasy a lot of the time – so that solace is denied. I’m not giving up that easily though…

And, horror of horrors, when I open my new pack of tummy jabs, instead of the pencil type I was expecting, I discover a whole new set of long needles to torture myself with until Friday! WAH!

those needles! they joined me in my own mile-high club!

those needles! they joined me in my own mile-high club!


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in which I get the low-down on my biopsy

I hope it doesn't get to this....thanks Annie for sending me your cartoon!

I hope it doesn’t get to this….thanks Annie for sending me your cartoon!

It’s been a tough couple of days since I received the biopsy report. The phrase that keeps on leaping out at me is ‘high grade’, scattered liberally amongst all sort of nasty-sounding long words  – hypochromatic, eosinophilic cytoplasm, karyorrhectic, even the cancer type, myxofibrosarcoma – which all mean absolutely nothing to me. As I am avoiding the internet, I will have to wait until I see Prof Khong again for enlightenment. But there’s a couple of days to kill…

My conversation with Prof Meirion Thomas (my surgeon from the Marsden) has left me feeling extremely anxious, not least the demand I hot-foot it back to London. Not to mention his cross examination of the Singaporean methodology…I tell myself that surgeons are well-known to be a bit gruff; later Prof Khong laughs when I tell him this.

Now come the questions: should I have gone back to London straight away? Would it have saved time? would it have stopped the cancer spreading to teh lungs and other soft issues (the biggest worry)? Deep breaths, Vic, calm down. I have to remind myself that it was not clear until AFTER the biopsy and PET scan that the tumour was malignant, so these thoughts are counter-productive. All the same, once JP has left and I am on my own, these anxieties niggle away and I envisage the little spindle cells  wriggling their way through my blood stream like a sperm seeking an egg.

 A couple of stiff drinks and some Nordic Noir are pretty successful distractions. However sleeping is becoming increasingly difficult and the pain-killers seem to do no good at all. The stocking seems to be growing increasingly tight as I  imagine the tumour growing within its confines.

In the meantime my phone rings constantly and emails ping around, lots of good advice and loving thoughts alleviate the underlying fears which, along with the pain, interrupt my sleep. No Ross to reach out for…he is in Korea.

So time for a bit of pampering: spend an hour topping up the tan by the pool, but as I can’t get my leg wet it’s too hot to stay for long! Then off to see a friend, who I have been helping with various articles on fans, so we escape into a world of Chinoiserie and the French court while we sip home-made barley water. Can’t do a pedicure as one foot is bandaged and they will only remove all varnish as soon as I step into hospital; anyway its too far to walk and too near for a cab. So as I settle for a cut and colour, I can’t help wondering if this is the last time I will have hair to indulge in such a way. I’m thinking of asking Louise’s friend Robyn Coles to design a special post-chemo hat for me; if she can make the princesses Beatrice and Eugenie look nice I’m sure she can sort me out.

‘Oh, what you done to your leg?’ asks Alvin the androgynous hairdresser. ‘Don’t ask,’ say I, ‘cancer but I don’t want to talk about it’.

‘OK, la, we talk about nice things…’. And utters not another word the whole two and a half hours. The word cancer has that effect on people.

Conversely taxi drivers here are delightful, full of concern and ‘God Bless’.

Which brings me on to the God question. I am delighted that so many people believe and are praying for me; even if I don’t share that belief I am sure that every positive thought helps me. Please keep all your prayers, positive vibes, messages, comments  and love flowing my way…

Finally we get to the debrief appointment. For the first time in my week of private medicine in Singapore we are running on time. As ever, Prof Khong is straightforward and honest, and explains everything to me in great depth.

To summarise: it is a high grade tumour and very fast growing. I don’t ask the stage number as I don’t want to scare myself and know that everyone is different so it is meaningless. More significant is the replication rate of the mitosis, which is ‘bad’ at 26. Anything over 10 is a cause for concern. He thinks it has not been there for very long, less than the 6 months he originally guessed.

I ask him what he would do if I was his patient. Operate immediately he says, and then do radiotherapy. These tumours – there are several ‘extremely rare’ present, one of which he has not seen before – do not normally respond to chemo, so he would not automatically do it since the tumour is contained. But other doctors may decide to zap any rogue cells on a ‘just in case ‘basis. He reassures me that it is possible that some cells might have already ‘spawned’ but they are so tiny that they wouldn’t show up for at least 3 months, the time it takes for them to reach 1mm when they can be picked up on a scan. ‘And in those early stages, its very treatable.’ The delays I have been angsting about are put into perspective.

He further explains that the big challenge facing the surgeons is the proximity of the tumour to the main vein, and how they remove it without damaging the main flow and losing it: there are three veins forming the vascular tree in the lower leg, can they damage one and survive on the other two is the question? He draws me a lovely diagram. Skilled stuff. In order to do this effectively he thinks that the English surgeons may want to do a CT Angiogram as it would help them be precise. They cannot rely on an MRI taken two weeks ago as the tumour is growing so fast.

I had taken the precaution of checking out my anticoagulation injection kit: imagine my horror when I remove the protective sheath to discover a needle one and a half inches long! The last ones I had were like an insulin pen. This is in fact my major concern today: it’s funny how anxiety can channel itself into something so seemingly irrelevant in the scheme of things. Hmm, they don’t do those in Singapore…so I am trying to work out if I have enough courage to jab myself inflight, as well as before and after… WAH! Am making contingency plans never fear…my bravery has its limits!

Now I have visions of being arrested and executed as a drug trafficker before I even get off the ground. I will be boarding the flight with a fully primed sharp and a load of the painkiller oxycontin, a highly addictive prescription drug which kills thousands of people each year in the US. Phof Khong is highly amused when I verbalise this fear. ‘You’ll be OK – no white powder,’ he reassures me.

After much hanging around (Singapore loses out to Switzerland on efficiency I’m afraid), I now have my MRI scan on disc and the biopsy slides, so I am all set for the next stage of my journey. There’s thunder and lightening outside,the oxy is kicking in and I feel mellow and relaxed as I write this…bring it on!

This darling sunbird, sometimes joined by its mate, comes to sing to me every morning on the balcony. Its yellowness reminds me of Louise...

This darling sunbird, sometimes joined by its mate, comes to sing to me every morning on the balcony. Its yellowness reminds me of Louise…


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in which I ponder living with cancer

I had thought about changing the title of this blog since I have decided to hijack it to share my latest excitements. But then I thought, this is a journey, not in the traditional sense, but one that will chart my travelling from illness to health, from fear to confidence, and from anxiety to a state of mental well-being.

This inspiration came thanks to Mark G, who alerted me to a BBC World Service programme on the Rhetoric of Cancer, presented by a prostate survivor (like Ross) Andrew Graystone. In it he questions the use of all this aggressive and belligerent military terminology: after all, our tumours are a part of us – better to embrace them, stop being a victim and learn how to live with it.

So this blog is going to be more about how I come to terms with my cancer, as I did with Louise’s death, the ups and downs, uncertainties and anxieties but, above all, how I will live with it until the journey ends with my physical and mental wholeness.

About to tuck into Black Pepper Crab on Saturday night

About to tuck into Black Pepper Crab on Saturday night

One of the great lessons I learned from Louise’s death is the benefit of sharing grief and troubles. My immediate Facebook entry the day she died produced such a fountain of love and support that it really helped pull us through the most terrible time of our lives.That’s why as soon as I heard the ominous word ‘tumour’ I decided, stranded as I am in Singapore, to share again and with as much honesty as I can bear. It has paid dividends…so many wonderful warm and loving messages (less of the beating and fighting now please!), and offers of help of all kinds. I feel embraced and enfolded in an aura of love and unconditional support. Thank you dear friends.

The other main reason for this blog is to keep all you lovely people updated so I don’t have to endlessly repeat myself.

So here goes:

I have had my dark night of the soul – described in the last blog – where I allocated my prized possessions to my dearest friends; where I made a bucket list of  ‘Things to do and see before I die’. But now I find I have taken back my belongings and converted that list into another trip to Mana Pools next August, a diving holiday on a fabulous boat in Raja Ampat and a three week trip to Burma. Not bad for someone staring death in the face a few days ago! Reflecting my Carpe Diem mentality, I have always believed in having things to look forward to.

We have now decided that I will be treated at the Marsden. By amazing coincidence Dr Fi was at a conference of early diagnosis cancer specialists on the day she got my text, and a quick survey of the assembled docs pointed to the Marsden, the main reason being the Marsden’s multidisciplinary team approach, so it’s a one-stop shop of excellence. Thanks to another extraordinary coincidence, one of the Marsden surgeons Prof Khong has recommended, Meirion Thomas, is not only a soft tissue sarcoma expert but he also specialises in saving legs…and just happens to be a very good friend of chum Pen. So that’s easy then.

The next dilemma has been whether to go NHS or private: you see the same people whichever route you choose. However, new NHS regs mean that every step of the way is dictated by a referral process, which can take up to 2 weeks…even my GP (who nearly fell off her chair when I rang her, the sarcoma is so rare) agreed that to go private has to be the best option. Someone who does not have insurance can benefit from my place in the queue.

Prof Khong has wanted me to stay here for a couple of weeks to decrease the possibility of a DVT on the flight back, and to give the wound a chance to heal. So our flights are all booked back on 10 December, with my Marsden appointment on 11th. The leg is still painful, wrapped in a huge bandage, which I haven’t dared to take off yet. I think the wound isn’t so bad, it’s just the tumour pressing on the nerves again.

My lovely leg, a single stitch and very little bruising, about 4 inches long...

My lovely leg, a single stitch and very little bruising, about 4 inches long…

But in one of those heart-in-your-mouth moments that I suspect is only the first of many, this morning I hear that Prof Thomas would like me to come back asap. Of course, this immediately makes me feel very anxious…I had been reassured that the cancer would not spread in two weeks, so I am left wondering what is so urgent. I know that my sarcoma is very rare but we won’t know exactly what sort it is, and therefore how best to treat it, until Wednesday, when the histology comes in. As someone said, ‘Trust you Vix to have the rarest form of cancer. You always do things in style’.  And another complimented me on being a ‘rare bird’. Indeed.

So trot back to see Prof Khong, who unbandages me and all looks good, albeit the cut rather longer than I had imagined. He agrees that so long as I take the anti-clotting jabs in my tum (self inflicted!) and wear these lovely stockings – see photo – I can go as soon as the results are in and the slides ready. So now booked to leave on Saturday 30, arriving Sunday 1 December. Are you ready London?

My sexy stockings, that I have to wear until I start my treatments...

My sexy stockings that I have to wear until I start my treatments…

He says that many of these sarcomas don’t respond to radiotherapy and there’s a 50% chance that they may operate immediately. Forewarned is forearmed. I’m ready for anything….

Meanwhile, we have a dear friend, JP, from Barbados staying. We have been out to some delicious meals, albeit me on a stick and not able to walk more than a few yards. And tonight I’m cooking one of my famous Thai Green Curries. But what the hell – a girl’s gotta have fun!

Ross and JP at Indochine last night

Ross and JP at Indochine last night