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.
Ross ski touring with Tommy, Dents du Mid in the background
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!
With Ann and David Mitchell at the Croix de Culet
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.
Sasha flanked by Melanie and me on NYE
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.
Tommy with Christine and Katie Pooler
The Youngies: Charly, Olivia, Tom and Katie
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.
One of our lanterns winging its way to join Louise
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.
Mitchells, Fenwicks, Cattell boys, Olivia & George Stoy…Dents…NY Eve
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.
A phone call yesterday bump starts me out of my holding pattern. ‘Professor Thomas has reviewed your scans and says there are no surprises, but can you come and see him tomorrow morning?’
I can’t help but wonder why (that sick feeling again, I said it would be the first of many last time); my instinct tells me there is a need for further discussion. The rest of the day passes in a blur of friends, a haze of chocolates, flowers and gifts, not to mention several glasses of fizz.
This morning Ross arrives at 6am, from Singapore, and we go together to the appointment.
My sixth sense is right: there is a discussion. The lovely oncologist Dr Miah and the Prof are now recommending that we consider 6 weeks of radiotherapy, followed by 6 weeks recovery, then the surgery to remove the tumour.
On cross-examination it appears the only benefit of this approach is that my leg will receive less radiation and to a smaller area. If I have the op first, they will have to irradiate the whole area around the incision, probably the length of my calf. (The diagram here shows the soleus and the gastrocnemius muscles.)
The tumour sits across both these muscles
The purpose is not therefore to shrink the tumour to make it easier to operate: the Prof says it makes little difference to his surgery; and indeed there is no guarantee that radiotherapy works on my kind of tumour.
For me it’s a no brainer: I really don’t think I can take this pain for another three months, nor live with the anxiety of hosting my tumour, which might spread in the interim, especially if the radiotherapy doesn’t work. I also need to capitalise on my current levels of positivity, which might get worn down with such a distant objective. My recovery will, in the end, all be down to this.
The Prof understands my thinking completely, as does Dr Miah. The pain factor cannot be underestimated. It’s a deal! And of course, it may just mean I can escape to Switzerland for Christmas and New Year, although skiing is along way off (even walking is going to be difficult for a long time). It’s about things to look forward to….
Also my other surgeon, Prof Khong, who has been in touch, favours immediate surgery. I am still revelling the comparison to Helen Mirren – what do you think? Perhaps it’s more about indomitable spirit rather than physical resemblance. Don’t forget she was in her 40s in this photo and I am now 56! Mind you I think I look pretty grim!
Carpe diem does mean seize the day after all, so that day is now Friday, and after that the only way is up…
LOOKALIKE (apologies to Private Eye)
Helen Mirren………………………………………………….Vicky Unwin (shurely shome mishtake?)
Administrative notes: I will be in the Royal LISTER Hopsital on Chelsea bridge Road at least until Monday; please don’t just pop in unannounced but contact Ross on 07831361190 as he will be my gatekeeper
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)
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.
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!
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…
Sadly my optimism has taken a slight nose-dive with the news that I have myxofibrosarcoma, which is, to quote Prof Khong,
‘one of the nastier ones where you may have to throw everything at it. It has a high mitotic index of 26 per high power field (HPF), meaning that the cell multiplication cycle is pretty fast’.
I am seeing the Prof on Friday and will post an update if there’s any different news from this.
I am hoping that it will not come to this – the amputation of my leg, and it being replaced with one from an Ethiopian as here! Thanks Clare C for this image!
Saints Cosmas and Damian (3 Century AD) were the patron saints of doctors, surgeons, pharmacists, and barbers. Fra Angelico
By the way I am not reading anything on the internet so as not to scare myself as you all seem to read is other people’s disasters, never the success stories. I will be guided by sensible medical friends and professionals about what to expect and then I will share with you all.
the second G & T is slipping down nicely, and now for an evening of Nordic Noir as pure escapism…
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
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…
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…
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!