Oops – WordPress posted my blog before it was finished – so please look at completed version here!
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…