Here I am in Beijing, and it’s hot! We arrived late Monday afternoon and the first thing I did was to book a tour, The Forbidden City and all the main attractions in Beijing, or so I thought. Imagine my surprise when I discover that I am in fact going to the Great Wall at 7 am! Language is a problem here, even in international hotels… Continue reading →
Believe it or not it’s been nine months since we have had a proper holiday (in Malapascua – https://vickygoestravelling.com/2013/08/13/in-which-we-dive-with-thresher-sharks-and-sea-horses/): our last one to Wakotobi was cancelled on the day of departure by my admission to hospital, so we felt we deserved a mini-break to relax and chill. I know many people might think my life is one long holiday, living in the tropics and swimming every day, or tagging along to Ross’s exotic work destinations but, believe me, living with cancer is hard work. Continue reading →
Now back in Singapore after a smooth trip over. It’s been an eventful week with a public holiday, hard work for Ross and an unwelcome health scare to boot.
May Day takes us by surprise and with an unexpected free day on our hands and nothing planned – seemed naughty to take a long weekend after so much time away, as most of Singapore does – so we decide to visit the extraordinary Haw Par Villa, as recommended by one of Louise’s friends. Continue reading →
It’s a problem getting round in a city where no one speaks English, on your own, with a gammy leg to boot. Do you arm yourself with characters on pieces of paper, to show to taxi drivers, and hope for the best, or take a tour? Continue reading →
The trip to Mt Fuji does not start well. Picked up in a large bus at our hotel and told I would have to pay at the bus station before departure. Premonitions of chaos as the bus circles the station three times before we can get off – sakura season (cherry blossom), the busiest time of the year. Continue reading →
‘No problem finding your train, all well signposted,’ the concierge in Tokyo assures me. Arriving at Tokyo station to take bullet train Nazomi 121 to Kyoto in peak rush hour, we find the place teeming with people running in all directions and the boards only giving information for the next 20minutes. In Japan, few people speak English, but by brandishing our tickets at a man in uniform, we are ably directed to the correct platform. Continue reading →
I 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!
Many thanks lovely friends for all your messages. Now home and can stagger around with help of a stick. Leg is very sore to tell the truth. Proper results Monday, but the lovely Mr Khong has confirmed the tumour is figure of 8 shaped and each one is 5 cms ie quite big. Also that there is a haemotoma so the whole muscle will probably have to come out.
I bought these shorts and top for Sulawesi, so had to put them on!
The good news is that there is a margin of 5mm between the tumour and the nerve and blood vessels, so that a good surgeon/treatment can save the leg…also that while I wait for the wound to heal and get clearance for flying (DVT risk until leg settles down) there is little or no risk of the cancer spreading into lungs, liver etc.
Other good news is that sarcomas are usually painless so only discovered when too late. Ross’s father said I was lucky to have been alerted by the pain, due to its pressing on the nerve. Mr Khong thinks its probably been there 6 months. It’s grown pretty fast!
So I am going to sit back, relax, have a G & T and finalise my xmas shopping lists, though Ross may have to do the buying!
For now I am being waited on hand and foot by my lovely husband, and on Sunday we have a dear friend, JP Jones, coming form Barbados for a few days.
The plan is that Ross and I fly back together, arriving on 10 December.