Detail from the Temple of Heaven complex in Beijing
It’s been over a week since the All Clear. After so much anxiety in the build up to the scans, its hard not feel the come down from the high in the following days. People say ‘You must be so happy that it’s over’ and I feel very curmudgeonly saying, ‘I am thrilled, of course, but it’s now only four and half years until I can say I’m in remission’. Continue reading
Carpets of wild flowers
The waiting is the worst. As the time for the scan draws nearer, the complete ‘otherness’ of Champery and the Swiss mountain air is appealing. Ross comes up for the weekend but otherwise I am largely left to my own devices, to meditate, do yoga, work on the book, garden and read. Continue reading
The beautiful rose Felcity Kendal gave us in Louise’s memory
Went to get an HRT prescription last week, and thought it worth mentioning to the Doc that I was feeling exhausted, and a bit dizzy plus I am losing weight (a kg fell off since I returned from China, now 53 kgs). She took some blood tests to rule out a number of things including under-active thyroid, mycoplasma (a form of pneumonia prevalent in Singapore) and Vitamin B 12 deficiency.
Dents du Midi in afternoon sunshine
Easter week in Switzerland is drawing to a close. Tommy and his two friends – all Thomases too – depart today, and we tomorrow. 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
Classic view!
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
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.
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 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.
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.
Me: ‘Yes.’
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.
Dear friend Hilary and I on NYE
Champery is as pretty as a picture in the snow!
Woke on Christmas morning to the sound of torrential rain! Not what the doctor ordered in a ski resort…
I had spent the majority of xmas eve chopping veg, preparing stuffing, making the cabbage, prepping the bread and apple sauces, and balefully eyeing our rather small goose. The boys go off skiing and narrowly avoid getting stuck on the French side – brings back memories of that terrible day I was waiting for Louise on her third attempt to leave London [her last xmas, 2010] and they got stuck in France and were not there to calm my nerves…had I known what a narrow squeak Tommy had getting here this year, with the English storms raging, I think I would have been beside myself. Sometimes ignorance is bliss.
Spent a very nice xmas eve chez cousins Christine, Diego and their boys, oysters and empanadas, their Chilean tradition. We did a rather fun Stealing Santa where you can steal someone else’s secret Santa when it is your turn! Tempers got rather frayed at one point…
Tommy on xmas day
Christmas morning itself is always a big reminder of Louise’s absence: she adored opening her stocking at the end of our bed, just as I adored finding silly things for her. The best present in 2010 was the burka I got in Oman, which she wore at lunch in France, just after they had been banned. We were doubled up with laughter at lunch and, later, when she skied down the mountain wearing it!
Louise in her burka on xmas day
Tommy is just as big a child and he is thrilled with the contents of his stocking. As ever we gather on our bed and open our stockings in turn. I had some lovely extravagant gifts, Jo Malone, Molton Brown, edibles – felt very spoiled. All the smellies a girl could wish for and perfect for the pampering phase of my life.
The master chef!
After lunch – there was plenty of everything, even the goose – with Tommy playing sous chef to shouted instructions from the sofa, charades were called for and I remembered we had a box game. When I opened it I discovered scoring sheets in Louise’s handwriting, evidence of past fun. The shock of seeing her childish, teenage scrawl brought her absence into a palpable reality and my mood never really recovered.
Ross and me exhausted by xmas; the charade box is in the foreground
In fact I had spent most of the day feeling queasy – a mixture of grieving and reaction to drugs – and so much food and drink make me feel worse, an unusual situation for me. On top of which my leg is hurting like crazy. In the end I leave the merriment and go to bed, but cannot sleep. Feel very anxious and vulnerable; the unspoken thought which I had been trying to banish all day now creeps into my head: is this my last Christmas? I wonder if others are thinking this as well; I try to gauge the meaning of those kind words and looks.
xmas lunch with brother Sasha, George and Beth, Hannah and Charlie
I have been trying not to think morbidly but what with my leg swollen and throbbing, it is hard not to imagine the worst. And all this terrible tiredness; and no matter how much I eat, I am still getting thinner… Is it just the price of healing or something more sinister? Only time will tell…
* * *
Wake up at 5 am on Boxing Day to the sound of the snow plough. The rain has turned to snow and there is at least 4-6 inches outside, and it is still snowing. Good news for the skiers and I can thus spend the day in bed writing and reading with my leg up. Which is now back to normal, thank goodness. They always say things are better in the morning.
Tommy enjoying the powder on boxing day
I am pleasantly surprised that I do not feel envy as they kit up to go skiing, even on a gorgeous day with deep powder in the offing. Instead I feel a great sense of relief that I can snuggle up at home with a good book (The Luminaries), a jigsaw and Radio 4 for company. It makes me realise how much energy it takes to heal my wounds, both mental and physical. At least six weeks…
My latest worry is whether my leg will be healed enough to start the radiotherapy in January. Despite the sudden improvement in walking – I can now flex my foot with each step rather than advance with a fixed, stiff knee joint – the pain comes winging back, a dull ache combined with a terrible tenderness where my calf used to be. I suppose this is how an amputee feels. But it’s difficult to rest the back of my leg on anything as it is so sore. And by the end of the day, my lower leg is tight and throbbing despite being elevated most of the time.
I took the dressing off yesterday, and Ross removed and replaced some of the steri-strips. Pleased to see the bruising has gone down a lot and the wound is looking good. So good I am showing it to you!
the much improved leg!
Last tummy jab administered yesterday too, thank God. Stomach a patchwork of blue, yellow and grey bruises with long lumps marking the needles’ length! Think this is a reflection not so much of my lack of skill but my loss of tummy fat, resulting in the injections going into the muscle rather than subcutaneous fat. Wah! Only wearing the DVT stocking at night now.
Another week of rest before coming back, so I am hoping that these small improvements will gain pace. Meanwhile, fret not, I love being on my own; the day is punctuated with visitors, the evenings alternate with meals in and out, Tommy’s girlfriend Olivia has arrived and the family feels complete again.
Louise, xmas 2010
vickygoestravelling 