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.
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.
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.
It is now exactly 48 hours since I went into surgery. The first 24 hours passed in a morphine-fuelled haze, interspersed with doses of paracetamol and anti-inflammatories. I recall texting like a maniac at hourly intervals as I was coming round – apologies, probably all gibberish! Then deleting all sorts of posts from well-wishers on FB as my fingers were just too fat and disobedient. I would wake from a doze and find a half finished text with random letters in the text box…as yet unsent (I hope).
After 24 hours of fasting a good English breakfast sets me up, but the pain is omnipresent and there are tubes sprouting from all orifices including a couple of holes in my leg. Private hospitals seem as short-staffed the NHS as I seem to wait for all sorts of things – for instance the drain removal is eventually carried out 3 hours later than scheduled and today the physio has not come at all! This is rather annoying as I have been dosing myself up with morphine in preparation for the former and so by the time it happens I am off the planet!
I am both fascinated and frightened when they remove the bandages prior to unplugging the drains. “This might be painful. First I will cut a couple of stitches, then count to three, and you take a deep breath and out it comes!” I breathe deeply, and feel nothing. “Is it out yet?” Happily both are removed painlessly. And when I am brave enough to admire my leg with fresh dressing on, I am amazed, despite the fact a large chunk is missing, it is neat and virtually unscathed.
Today, day 2, we decide to try and walk to avoid the risk of an embolism. The first attempt is terrible, the pain excruciating. However I cannot lose the catheter until I can walk to the loo, so its a vicious circle. When Tommy and Ross come in we try again and its much better. Soon I am unplugged, have made a reacquaintance with the loo, and am having a lovely shower and a clean nightie (thanks Hilary)
A few visitors pop in and out, I sleep, but the real progress is in the almost total diminution of the pain; only a slight pulling of the stitches when I walk but I think that’s to be expected. And I even took some steps on my own.
Once I’ve got the physio sorted I fully intend to be out of here…
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 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)
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
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!
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.
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.
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?
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!
When our lovely daughter Louise died, aged 21, I really felt I didn’t want to go on living. But, gradually, through the love and support of my husband Ross, son Tommy and my fabulous friends, I came to an understanding with life, and realised that I could re-discover my old zest for it.
Since Louise died we have travelled the world – from Bhutan, where we erected prayer flags in her memory, to Kerala, Zimbabwe, Kenya (where we interred her ashes with those of her grandparents), Switzerland to ski and walk in the mountains, and then a move to Singapore with Ross, where we have been capitalising on the delights of the Far East: India, Malaysia, the Philippines, China and Indonesia. All in 9 months!
Suddenly all this recovery is catapulted into outer space. Yesterday I was diagnosed with a soft tissue sarcoma of the calf, and here I am today in hospital having had a biopsy and a PET scan, waiting to hear the prognosis. Our 30th anniversary dream diving holiday to Wakatobi in Sulawesi cancelled – we should be there right now!
* * *
The tumor began as a suspected hematoma in the calf, which would not go away: I had a couple of weeks of ultrasound and massage, with lots of stretching but it seemed to get increasingly painful. By Monday this week, I was beginning to have difficulty walking without limping, so decided to go back to the GP. Suddenly I was being rushed to a vascular surgeon, having an MRI, followed by a consultation with an orthopedic surgeon and, finally, today into hospital to have a PET scan and biopsy.
The last 36 hours have been very dark indeed. Reading up on Soft Tissue Sarcomas (STS) of the calf was hardly comforting: not only is it extremely rare, but also the treatments include chemo, radiotherapy and excisions, sometimes all three, and often two of the above. Then there’s no guarantee that the excision will not affect your nerve, and you might be unlucky enough to lose your leg; at best your calf muscle will probably be damaged.
But the worst scenario is that it could have spread to the soft issues of the lung, liver and pancreas. In that case it is usually terminal.
Last night I could not sleep, hardly surprising really. ‘Why me?’ As Louise would have said, ‘Its not my fault’. What have we done to deserve all this bad luck: the deaths in close succession of my mother, Louise, and then father, with Ross’s prostate cancer in-between? He at least is now clear. I have never believed in God and I certainly would not be tempted to do so now!
At 3 am I am sitting on my lounger overlooking our softly-lit pool, all calming turquoise and gently fading pinky/mauve lights, the palms gently rustling in the breeze, and breathing in the scented tropical air. Out of nowhere a big storm rolls in, forked lightening and soft rain. I begin to think how much I love my life, my husband, son and friends, and I am not ready to go just yet. So much travelling to do, so much laughter and joy to be had…but later in the darkness of the bedroom as I toss and turn and remember my maxim, Carpe Diem, I can see that elusive day flitting away from me like a will o the wisp, tantalisingly out of reach.
* * *
The worst moment today was when I was recalled to the PET scan: ‘We think we have seen something on your pancreas and liver and need to re-check it’.
As I lie in the tomb-like scan, tears roll down my cheeks, my whole body trying not to convulse – you have to keep very still – silently shouting out, I don’t want to die!
And maybe my time has not yet come: the radiologist confirms that while there was indeed ‘hot spot’ ie tumor in the calf, what they had thought were shadows on the other internal organs turn out to be my gut. Phew!
But we are not out of the woods yet; the precise nature of my tumor has to be diagnosed and treatments agreed. I will come back to England for those, at least 6-7 weeks of horridness. I will probably lose my calf muscle – no more mountain walks – but should be able to ski again in due course. These are small but meaningful mercies if one can at least continue to live.
Arrived back in Singapore today ready to move into our new apartment tomorrow, and to get our work and residency permits. All a bit grown up. Waiting to re-connect with delicious Chinese food (ie dinner!) provides a little space to look back on the whirl of the past few weeks.
After my lovely few days in the Lake District, we sampled the high life. Fist a vist to Jesus College, Cambridge, where friend Fi’s son Hugo was singing the Monteverdi Vespers. I never went to Jesus when up at Cambridge, but it brought back the memories all right – the best days of our lives, of course, especially as some of the other guests were fellow students…35 years on! Magical singing followed by a delicious dinner in the Jesus Hall. Very convivial.
Then Opera! Thanks to the glorious English summer we had some stupendous outings to Garsington and Glyndebourne with friends. Sipping champagne by the Lake at Garsington, or on the lawn at Glyndebourne, dining al fresco or in the Glyndebourne restaurant, we felt very privileged. Oh and the music was quite good too!
While I had a busy day of meetings (yes I do sometimes work!), Ross mananged to squeeze in a trip to Henley regatta and lunch with Olympic Gold-medal winner, Andy Hodge. Then for me a trip to Oxford and more Fellows’ Gardens for the Caine Prize dinner in the Bodleian Library. Always a time when I see old friends from my African literature days; Ben Okri gave a moving tribute to Chinua Achebe, who died a few weeks ago, and whom I represented at the Booker Prize when he was shortlisted. Those were the days, my friend… In between, a Patron’s Evening at Art First (www.artfirst.co.uk) to launch Natural History, a charming exhibition comprising 28 artists working across a wide range of mixed media and disciplines providing a thoughtful reflection of man’s interaction with the environment. Catch it at 21 Eastcastle Street , London W1.
A couple of visits too: one by a film crew, making a documentary on drugs for BBC3/Education, who wanted to talk about ketamine and Louise: we met up with some of her friends by the bench and reminisced. The film is due out in September.
My American half-sister Bonnie paid her annual visit; we also put flowers on the bench, and sat in our garden, which is looking the best ever, especially since we laid a new lawn. Pity we won’t be around to enjoy it!
And to end off, the film premiere of friend Iain Softley’s latest film, Trap for Cinderella (ready my review on http://www.vickyatthemovies.net), followed by our proper 30th wedding anniversary celebrations, first, at Petrus – menu gourmand with wine for every course – courtesy best man John Pooler, best maid Fi, and partners;
and secondly with a collection of our oldest friends and some of son Tommy’s, in our garden, where I tried out my newly acquired oriental culinary skills in combination with more British ones…
Gosh I feel homesick already…but it’s Shanghai next week.
Singapore’s Botanical Gardens has the largest collection of orchids in the world. Simply stunning. Here is a selection, no words, just pictures to make you go ooh-aah. Click on the images to get a better view.
PS we have moved apartments and now have and 8 ft sq balcony but with room for 2 chairs, a table and a BBQ. Trying it out tonight, if the rain stops!