Radiotherapy programme in place at last

Early this morning the taxi took me down to the Institut du Cancer de Montpellier.  This is a vast, impressive pile of concrete and glass, luckily at the entrance to Montpellier on our side. This is regional centre for cancer for the whole of the Languedoc Roussillon region.  I found its imposing presence reassuring: this is the place to be to deal with cancer.

The first steps inside are classically French: intimidating and impersonal.  The taxi driver, Luc, showed me the machine into which I had to insert my carte vitale (health card containing one’s personal data) and then I had to indicate on the touch sensitive screen which doctor I had come to see.  Out popped a ticked with a number and instructions to wait until called.

After that things got more human.  My number came up on the screen and I went to desk C where I was greeted in a friendly way by a receptionist (far better than our arrival at Beau Soleil).

When at last I saw my oncologue radiothérapeute (oncology radiotherapist), Dr Elizabeth Kerr, she was brilliant.  She was friendly and approachable (explaining her name was because of Scottish grandparents), extremely concerned that I should understand exactly what had been done so far and what were the options for treatment now and why, and that I should understand what was involved with radiotherapy. I’ve been given a whole lot of bumf, including a very well presented booklet on endometrial cancer treatments, and I rather suspect that she is the consultant involved in this work.

Dr Kerr stressed that of course there was no guarantee of elimination of the cancer, but that the purpose of the radiotherapy was preventative: to try to ensure that no cancerous cells had escaped during surgery and remained in the abdomen.  She said that chemotherapy was only used if the cancer had moved to the other organs, which it hasn’t in my case.

I asked about the potential damage to the gut and bladder of radiotherapy, and whether they used a technique called IMRT.  She said yes, it was difficult to shield other organs, which is why they would be giving 25 light doses of radiotherapy rather than a big blast, to give the gut and bladder time to recover a little each night. (And yes, they had been using IMRT for over a decade.)  Most people don’t have major problems following this radiotherapy, but she warned that the main side effects could still be diarrhea and fatigue (not helped by the daily taxi trip to Montpellier) and that it was important to follow the advice on diet during radiotherapy to avoid unnecessary problems.

The diet is pretty grim: pretty well everything I like is ‘déconseillé’!  I can expect a summer eating very bland hospital type food, while watching my visitors enjoy more appetising fare.

diet

 

Meanwhile I’m digging into the stock of delicious spiced meals, made by my brother in law, Peter, while I may still eat spices.

On Monday I go back to Montpellier for scans and then I have to wait while Dr Kerr and her team set up the complex program to target the relevant areas.  The actual radiotherapy will start on 9 July and continue until about 13 August (I still have to get the dates and times).

At the end I will have one larger dose of internal radiation, through the vagina, targetted exclusively at the cervix, the point at which the cancerous uterus was removed.  I apparently get more information and counselling from the very nice nurse, Rosie, who is to be with me at all sessions from now on.

Home at last

This time I’m home ‘définitivement’.  Unlike the interim two nights between hospital and convalescence, I feel ridiculously well. Of course I’m doing nothing round the house or garden and not taking Poppy for walks, but apart from being tired in the evening, no complaints of significant aches and pains. The first weeks at Beau Soleil seem like a distant bad nightmare.

Poppy was gratifying pleased to see me but then, being a fickle animal, was confused when Margaret left, abandoning her to me.  But she soon settled down, and did some proprietorial barks to chase off intruding marauders.

This morning friends took me to the lovely local producers’ Tuesday market.  It was great being greeted by so many old friends and acquaintances, confirming the feeling that I was really back in the real world.

Only downside was meeting two other people with cancer. One was the woman who  owns a veg and deli shop where the Tuesday market meets.  I had heard from my friend, Marie, that she had breast cancer and was wearing a wig.  She evidently had been told about me and we are now comrades in arm, as it were.  I might even bump into her at the Institut de Cancer in Montpellier.  The other was a delightful man from the nearby village of Mars who has nly recently discovered he has a rather nasty cancer affecting bones and lymphs.  Really upsetting – I had supper with him and his wife a few days before going into hospital.

The general talk here is about how many people in the le Vigan region seem to have cancer.  Even my doctor is overwhelmed by the apparent epidemic.   Is it statistically true? Is it national? And of course, I think often of Sylvia, whom I have left behind in les Chataigniers.  As soon as I’m back behind the wheel I will go down to see her.

Lunch today was bliss: after all those weeks of disgusting hospital food (yes, here in France), I enjoyed smoked trout from Vero’s trout farm up the road, organic salad from Andy and Yvette, and apricots from another local grower.

Now I’m about to dine next door, as my neighbours, Neville and Janet, have just arrived for their holiday.

Algerian history

Two days ago I was made aware of how little I know about the history of north Africa.  I remarked on the name of the nurse taking my blood pressure, saying how unusual (and pretty) I found it.  She explained that her parents came from Algeria.  Then she corrected herself and said they were Kabyles from Kabylie.

I had never heard of Kabyles, so of course consulted the internet and discovered they are a Berber group in a province of what is now Algeria, with a strong cultural identity and fierce defenders of their Berber language.  Judging by this nurse, they also have a distinctive beauty.

Yesterday when I said goodbye to her, I was touched when she leant forward, gave me a ‘bise’ and wished me good luck.

Radiotherapy – how much, when?

Today was very frustrating. I had understood it was to be the day when the surgeon, Dr Courtieu, gave me details of the radiotherapy programme.

When I got to Montpellier I found that the Centre for Rare Tumours had still not sent their report. I expressed some irritation and Dr Courtieu said he would chase it up.

This gave me nearly two hours to observe the unsatisfactory treatment of outpatients, many of whom had potentially grave ailments. The ‘waiting room’ was an enlarged area of the corridor, next to an entrance door that banged and creaked loudly and incessantly, and close to the queue for the reception desk, staffed by unsmiling secretaries. And precious little room for the patients in wheelchairs. Clearly find a non portakabin home for outpatient consultations is lower down the priorities than the parking house being built.

Just before lunch the report was faxed through. I was given a copy later, but all Dr Courtieu said was that it confirmed that the treatment should be radiotherapy (he repeated his earlier figure of six weeks of daily sessions) PLUS curiethérapie (internal radiotherapy aimed at the cervix). Started looking this up on the internet but stopped. It is not nice and I need to talk to a radiotherapist before worrying.

And this was what really got to me. Here I am in the post- operative stage, I have travelled to Montpellier, and all I see is the surgeon (history) rather than radiotherapists and oncologists (the next stage).  Dr Courtieu assured me that there is no time pressure – I have to recover from the surgery before treatment starts  but in a joined up medical world rather than parallel professions working separately, I think the treatment guys should have been there

Instead, Dr Courtieu will now pass my case to the Institut du Cancer de Montpellier. Hopefully not too much longer I will make another trek to Montpellier for a meeting in I hope to finally get some answers.

At any rate I think it safe to say that much of this summer will be spent  on the road to Montpellier. My taxi driver today said that the secret is to ask for early morning sessions so I’m home before midday. So, sorry friends and family coming this summer. I just hope you enjoy your visits. I certainly look forward to enjoying the afternoons with you – after a recovery siesta.

For those that like medical gobbledygook – in French – here are the conclusions from the national rare cancer centre in Lyon – Le Centre Expert National, Tumeurs Malignes Rares Gynécologiques. (A committee of surgeons and oncologists reviewed my case.)

conclusions

Toothache

For over a year now I’ve had a problematic crown sitting on an implant which my dentist out in about 12 years ago. He acknowledges there is a problem – the crown moves and eventually comes out – and he has promised to replace them free of charge.
Sod’s law the crown comes out whenever I’m in hospital. And it did yesterday. Despite being booked up till September my dentist saw me this morning. It looks as if the replacement is going to be major work, which he will do in November after I have recovered from radiotherapy. Meanwhile he stuck the old crown back and said not to hesitate to come in whenever it came out.
An hour later I developed excruciating toothache- the worst I have ever had – and it lasted ten hours, despite the doctor here increasing my painkillers.
Maybe this is all to remind me what Sylvia endures every day. At any rate I learnt the word for the roof of my mouth: ‘le palais’. Some palace!

The other patients

Now that I’m feeling so much better – just a strange sensation that my abdomen is no longer mine reminds me it is only weeks since I was really quite ill – I feel a bit of a fraud being here. Others, including of course Sylvia, are so much worse off than me.

There is the usual collection of fragile octogenarians, both men and woman. At lunch Sylvia and I sit opposite a delightful couple who have been married for 57 years. She had polio soon after they married and in a wheelchair, he is her carer and damaged his back badly when lifting he, and is currently wearing an extremely uncomfortable solid plastic version of my corset.

He was a winegrower till his retirement, just outside Ganges, but as none of their four children wanted to continue, when he retired, he dug up the vines and sold much of their land. I gradually realised that they had been the main landowners in Moulès-et-Baucels, now an extremely ugly dormitory village just beyond Ganges – no doubt all the villas sitting on their former vineyards.

At supper we have had two quite different companions: an amiable enough woman in a wheelchair and a very strange individual whom Sylvia called ‘Miss Grumpy’. At first she would not even say hello to me and we wondered whether it was xenophobia, but in fact it turned out to be a dislike of change, and she came to regard us as bosom pals. She went today, so we await to see what this evening brings.

There is a collection of particularly scruffy men, who spend much of the day smoking at the entrance, and lots of others who look very decrepit.

In other words, now that I’m feeling better, there is nothing to keep me here other than a desire to keep Sylvia’s spirits up. I’ve got to get out! I know it is only six weeks (tomorrow) since major surgery, but I really feel remarkably well, and visitors keep exclaiming with some surprise that I have a ‘bonne mine’. I have provisionally set my escape for next Monday

Les chantiers

I seem dogged by noisy building sites and roadworks.  At Beau Soleil the noise and dust outside was relentless from dawn to dusk.  They were not only building a carpark near my room, but immediately underneath my window a pavement, with much cutting of paving stones.  Despite temperatures being in the mid-thirties, I had to keep the window closed in my hot little room.

Then when I moved for calm and peace to Les Chataigniers, I found myself in a room facing the road (rather than, as I had hoped, the hillside) and in the midst of major roadworks.

The mayor of Molieres Cavaillac is also President of the Communauté des Pays Viganais – that is, all the local communes.  And surprise, surprise, there is this major building project in his commune: laying pipes and completely redoing about two kilometres of road.  It has been going on since the beginning of the year and the bulldozers and steam rollers have currently reached the stretch outside our building. A relentless noise all day long.  It was bad for me when I had my headache and last week, when the temperatures were very high.  It is worse for my poor friend,Sylvia, in the room next to me, currently undergoing another course of chemeotherapy for her brain tumour.

A pity, because the building is surrounded by some pleasant places to sit (as in the last photo), but now only if you can put up with the beep beep of vehicles reversing.

Bad times just a memory

Now that I have my Mac again (and am feeling better than a few days ago)  can start putting pictures on my blog again.

These ones are from my month in la Clinique Beau Soleil.  It is amazing how really tough moments have now receded like a bad dream.

Pehaps I shouldn’t put the first one up, it is so unflattering!  One of the girls took this, I think the day after the operation. I was still high on morphine and had not yet started to feel so ill.

Then followed the awful period with the naso-gastric tube, to drain the contents of my stomach while nothing was working.  It was kept in place by a large amount of sticky tape on the nose.

Walking the corridors was quite difficult, with a stand holding all my farious ‘perfusions’ – stuff being dripped into me – refusing to go in a straight line, ike a badly behaved superarket trolley.  By the time th thir photo was taken all the perfusions in the veins in my hands and arms had failed and the anaesthetist had put a needle into a deep vein in my neck.

The fourth photo shows my miniscule room, the following two the corridors where I walked back and forth.  And finally an example of the good quality art on all the walls.

 

 

One step back

The last three days have not been brilliant: extreme fatigue, a constant headache and erratic blood pressure. Today the physio was kind and reassuring, reminding me – as all the doctors have – that this was pretty major surgery. He said I should stop worrying about the exercise targets I had been setting myself and just accept that I needed more rest. I just wish I could sleep at night rather than through the day!

 

Finding a pattern to convalescence

Now that I feel so much better, the challenge is to find a way to get through the days without succumbing to boredom and complaining.

Mealtimes should be a welcome diversion, but the table companions….. Luckily this evening Sylvia and I managed to be at the same table at last.

Little things can entertain: at lunchtime there was suddenly a terrific noise of banging and drilling. An elderly patient who was borderline confused managed to lock himself in the lavatory. It took a good half hour to break in. The door would have done proud at Fort Knox.

I now alternate walking round the whole building several times with lying on my bed, feet high to drain them. This afternoon I had my first session with the physio and was impressed. He massaged the legs and feet, manipulated the arthritic knee which has flared up over the past month, and gave me lessons on how to breathe properly, which will apparently help with the lymph gland problems.