Final chapter in clinique

Things are better, but at the same time unsatisfactory and inconclusive. Mobility is much improved but way behind where I should be at this stage. The mysterious knife-like pain is much reduced (or masked), but still threatening if I try too much and still undiagnosed.

Already by mid-week last week I was slowly increasing mobility. But I am still only lifting my arm to 60 degrees, I use the right hand with difficulty when eating and I can still not touch the top of my head.

The vibration therapy is really helping: I no longer have the violent shooting pains, just warning signs not to overdo it. It is easy to forget that the vibralgic is reducing pain but not removing its causes. Yesterday morning, full of optimism,  I did about a dozen lifts of my arm, first in front and then to one side. An hour later I was temporarily doubled up. The Thursday and Friday Vibralgic sessions had clearly worn off.

The two further exploratory tests prescribed by Dr Belhassen proved abortive.  The medical secretary mistakenly sent me off for a scan rather than scintigraphie on Friday (I was not too distressed as I’m convinced the problem lies with muscles and tendons rather than bones). Then yesterday’s échographie, which was supposed to be done while injecting something in the biceps was totally unsatisfactory. The radiologue more or less said it was pointless sending patients with shoulder replacements for échographies; he could see virtually nothing, let alone enough biceps to do an injection.

Well, that’s it: no more tests to run, still no clear conclusion about the cause of the pain. Yesterday afternoon Dr Belhassen acknowledged there had been some improvement in mobility but gave his opinion that the operation had not been a success.  He was clearly pleased that the Vibralgic had helped and is going to add Tens treatment electrical nerve stimulation. (I’ve already had some electrode therapy, but designed more to stimulate the muscles rather than tackle pain.  I’m not clear yet if the two are different.) Then, he said, there was no more à rééducation centre could do for me (i.e. Pressure to use my place…).

I’ve now been given a definite departure date: 11th February.  Until then I’m being kept as an inpatient rather than lodging out  (I learnt from Delphine that this is because there are no more day patient places, rather than generosity keeping me on full time!)

I’m resigned to this, and the fact that recovery is going to be a long, slow haul, with months of daily physiotherapy sessions. I have found a practice in Ganges with several physiotherapists and a pool.  It’s 25km from the house, so the daily trip is going to be a challenge until I van drive again.  Dr Belhassen is confident I can drive already, using mainly my left hand, provided I can reach the gear stick with my right hand. Let’s hope my insurers are equally sanguine!

 

Mad, Mad and Bad

Every day I wake up and something new and more awful has happened in the world. What Trump is doing is surreal.  Words fail me. All I can do is publish these images posted on Facebook over the last 24 hours.

My surgeon a prosthesis pioneer

There are quite a few amputees here.  Most appear to be waiting for their stumps to strengthen before being fitted with and learning to walk with prostheses – artificial legs.

Traditionally this has been an artificial limb which you put on or take off. I well remember as an undergraduate, when a group of us went swimmining in the River Cherwell, seeing one guy leave his jeans with the articial leg sticking bizarrely up into the air.

I have just been learning that a new, still unusual procedure is to put a titanium implant into the bone of the stump and attach the prosthesis permanently to it.  This is known as osseointegration and sounds very similar to the technology used for my expensive tooth implants!

It  turns out that my surgeon, Marion Bertrand, is the leading pioneer of this technique in France. So far only a handful of amputees have benefited from this procedure. A fellow patient here, a young woman in her late thirties, is awaiting the operation, having formerly had a traditional artificial limb.

All three of her patients here – this young woman, Nadine and me – are really pleased that a woman has made it in the male dominated world of surgeons – and retains qualities of patient care and communication.

Small world

For the past ten dweeks days one of my dining companions has been a woman from near le Vigan: we have the same GP, physio, surgeon, and now, centre de rééducation!

Nadine is very much the sort of strong personality you expect from the Pays Viganais: a retired maths teacher and accountant, active in Amnesty and Restos du Cœurs (the charity which distributes food to the needy), opponent of employing people on the black, and staunch believer in healthy eating and living and alternative medicine.

Her husband, who runs a trout farm, is a gentle, smiling character and – again, small world – Chris and I bought the wood for our bookshelves in the house below from his father (who at 95 is still driving…). His sister is the mother in law of my doctor – and hence related by marriage to Jacky, who built my bassin! And, and – his family (Nouguier) are cousins of Christine Capieu, with whom I used to play music.

A better week

I was still fragile over the weekend: the pain was if anything worse after the infiltration, and I was demoralised by my failure to book a taxi VSL for the daily trips between my next place of stay and clinic (22 abortive phone calls!). Then this week things have looked up.

The return to passive rééducation – a ban on any activity which causes pain – has given the muscles, tendons or whatever a chance to calm down. Then on Tuesday Dr Belhassen said the scintigraphie would be on Friday and the échographie on Monday – and that meanwhile I should remain an inpatient here. So just as well I had called a halt on phoning taxis!

I have been noticing a slight improvement in my shoulder and arm.  It could, of course, be that once again I am not doing much. But although the sudden knife-like pain is still there, I do have increased mobility.  Nothing like where it should be now, but I am using both hands to eat (and type, for limited periods), I can touch my chin and left ear (but not the top of my head) and I can shake hands. I reckon I’m still only half-way to the target of raising my arm 90 degrees, so essential for leaving and driving.

Yesterday there was a minor breakthrough. Dr Belhassen had asked Delphine to try using a machine which vibrates the muscles in the area with pain whilst I was doing my daily exercises for her. Result: no shooting knife pains during the exercises, instead just low level warning signs. Dr Belhassen had told Delphine that he had read that this procedure could increase mobility during rééducation by up to 15%.  I think he has reached the stage of being ready to try anything.

it is not clear why or how long the benefits will last, but this morning I’m still more mobile than previously and the shooting pains are less frequent. Delphine expresses caution, given that I’m not demanding much of the shoulder. We are pinning hopes on Monday’s échographie revealing the cause of the pain.

One thing is for sure: this shoulder is going to take a long time to heal.  I must now continue my reasearch for a physiotherapy practice in Ganges with a pool and prepared to take me on for daily sessions.

Delphine – and other quality staff

Sometimes I have made passing negative references, but on the whole this is the best run clinic or hospital I have been in.  In particular the staff are almost universally welcoming, smiling, sympathetic and helpful.  From doctors down to cleaning staff.

Perhaps the gold star goes to the ergothérapeute, Delphine. You could mistake this slight, pretty young woman with pony tail for a student.  But no, she is a superb professional with at least ten years experience. She combines a sense of authority with that of someone who is always observing, watching and listening to (à l’écoute de) the patient.

It’s difficult to describe the work of the ergothérapeute. Yes, she does the work of an occupational therapist, preparing patients for the practicalities of life at home, providing equipment advice and techniques for coping with handicaps.  But also, for people with arm and shoulder problems, she works alongside physiotherapists to help you regain movement. Each day we do apparently simple movements, often involving the use of toddler toys (wooden blocks or three dimensional wooden solitaire) and I have experienced the satisfaction of improvement, albeit slower and more painful than usual. I have also enjoyed chatting with such a very nice young woman.

On Monday she completely overwhelmed me with her generosity.  She had heard of the problem I had had finding somewhere to lodge and invited me to stay with her. It turns out that she has a compagnon (partner) with some sort of neurological disorder so he is in a wheelchair (she met him when he was a patient here). More than that, they took in his 80plus uncle temporarily while looking for a flat near them, and, when he then had a stroke, took him in permanently, offering him one floor of the house and sharing meals. As she said, cooking for a fourth would make no difference.  I was really touched, but said I would prefer not to intrude on her already complicated life.  But I know if things get too difficult I can always turn to her.

The kiné, Audrey, finds it harder to empathise with patients, but she means well, and as I have now discovered, has been reporting my problems back to the physio service.  Yesterday while waiting outside the doctor’s room, the head of physiotherapy, whom I know only to say bonjour to, came over and gave me a big hug. And the physics who supervise my pool sessions are quick to encourage me not to try too much. (Well, most of them. There are a couple of young men who still have to learnt to relate to patients rather than their smartphones!)

I see less of the nurses and aide soignants these days as I am virtually autonome. Delphine was a bit taken aback when I confessed I now put on my compression stockings myself, albeit with difficulty (essential if I am to be autonomous).  But they are always cheery and caring. So too are the women who bring breakfast and clean my room. I’ve just been sympathizing with the young woman (Senegalese I think) who is cleaning my room while I sit writing this in one of the sitting areas. Her three year old has been sick so she had to take time off work. i told her about my three year old granddaughter and we shared the marvel of this stage – the firm transition towards independence.

Even, as I have said, I appreciate the willingness and sympathy of my mercurial Docteur Belhassen .

Somebody, somewhere has done an excellent job on re ruitment and staff management policies.

Depression

This blog is more a personal diary for myself – To keep the brain cells working – and also a way to communicate with family and close friends. But because it is open to the wider public, sometimes I  think twice before writing. This morning I hesitated, then decided to acknowledge- to myself as well as to others – that for the first time in my life I am suffering from depression.

This has been building up over the last month: I have faced endless setbacks and lack of progression in the rehabilitation, combined with the stress of combatting the system to keep on having treatment.

The real killer has been not so much the usual discomfort of rehabilitation but these sudden, mysterious, violent, knife- like pains in my right arm, which occur with a frustrating lack of pattern. Since the injection in my arm they have if anything got worse – but that could be because of increased, determined exercise by me in my twice daily pool sessions.

There has been an embarrassing and more frequent tendency for my eyes to fill with tears during sessions with the kiné, Audrey, and ergothérapeute, Delphine, when some movement has precipitated this sharp pain. Yesterday morning was particularly bad, so I decided to seek help.

I was already scheduled for a routine visit with the clinic’s psychologist, Francette (I had somehow slipped through the administrative net and failed to see her on arrival), and decided to ask her what I could do to stop this embarrassing weeping. I was not expecting miracles, just some practical advice about how to cope better.

My first ever visit to a psychologist! She turned out to be extremely nice, intelligent, sympathetic and easy to talk to. I recounted my difficult four years – shoulder operation, hip operation, cancer, and second shoulder operation (all operations with complications) and added Brexit in the list of setbacks to overcome.

Francette completely understood that it was the shock of how one’s country of birth could display such intolerance as much as the practical impact on my life that had generated physical distress. She said she had been abroad in 2002 when the French left had to vote for Chirac in order to keep Le Pen out and she had experienced the same physical shock.

She confirmed that it was the horrible question mark over what was causing the pain and the potential this had to completely overturn my plans for my life over the next few years which has proved the breaking point.  My body, she said, is responding physically to the combination of physical pain and emotional stress and uncertainty. It is saying: “enough!”  (This sounds more plaisible and articulate in French.)

i will see her again, but meanwhile she encouraged me to revisit plans for what she delicately called the next tranche (slice, I suppose means more, stage) of my life. At the same time she also thought a course of anti-depressants could help stop the current cycle and would be passing this opinion to Doctor Belhassen. I agreed, acknowledging I had no fear of dependency as I had always found it easy to stop medication following lengthy use after operations. I’m also booked onto a lesson she gives on relaxation (less convinced by this…). An interesting aside, I think the French have a much more open and ready acceptance of the role of psychologists and therapists than we do. I saw for example that the – apparently very self confident – policeman was the patient before me and showed no embarrassment at meeting me on leaving.

Then on to a pre-scheduled meeting with Docteur Belhassen to review the effect of the infiltration. He was not surprised it had not worked at all and repeated his scepticism that the problem was in the biceps.  He repeated that it upset him as much as me that he had so far failed to discover the cause of the pain, but the arm is filled with a complex mixture of muscles and tendons making diagnosis sometimes tricky.

What was promising was his declaration he did not want to give up. He has decided to send me for a scintigraphie and also a special échographie where the arm is examined while moving to try to track down the problem. He added that he did not want to prescribe me anti depressants yet as he was convinced that knowing what was causing the pain – and hence having a strategy for solving it – would be the best medicine I could have.

then he came round his desk to shake hands -as we do in France – and to give me a big hug – less commonplace.  Despite his excitable, eccentric behaviour I’m actually quite fond of Dr Belhassen.

Preparing for the next stage

i suppose you could say I have conceded partial victory to the other side. On 27 January I’m moving out to La Pasqière and will continue to come here as a day patient for rééducation.

Marie Laure and others thought I should have been fighting harder, resisting the pressure to make me leave, maybe applying to transfer to another centre, and soliciting the support of my surgeon. I think I have given in for various reasons.

First I do recognise that the non- functioning of a shoulder (and hence arm) is nothing compared with patients with the dreadful multiple injuries that come here every day and I would not wish to deny them a room. Also, I think I have been – and continue to be – very lucky when compared with people in my plight in the NHS.

But also there is an element of pragmatism: I don’t agree with those who think I would be successful in an application to transfer to the Clinique Fontfroide. Nor do I reckon that my surgeon, however much I like and respect her, would regard my case as one to pick a fight with one of the best rééducation centres in Montpellier. After all, she is continuing to send her patients here, but at the same time she is not one of the big names (i.e. Expensive) who could threaten to withdraw referrals if she doesn’t get her way.  I will email her, however, so she knows that her instruction that I should stay here until I could raise my arm 90 degrees has been ignored.

It has been an interesting lesson in the ambiguous balance of power between surgeon and establishment applying government guidelines. It is not clear to me yet whether it is just Maguelone ruthlessly applying protocols for length of stay after joint replacements, or whether this is something that has happened everywhere in the last two years since my lengthy stays after left shoulder and hip replacements. I can completely understand the presenting economic case, even though it rides roughshod over individual cases presenting particular problems – like me and my tendons – and the long term total cost of sending someone home if there is not the support structure (in my case, a rural community with inadequate health resources and transport problems). I have seen some worrying cases of people being packed off to homes where they live alone and clearly not in a state for autonomous living.

So, I’m going before pushed. I’m going to a centre run by Catholic volunteers, primarily for people visiting family members in hospital (I suspect the main target group may turn out to be parents of sick children) but also accepting people receiving daily hospital treatment providing they are autonomous. It’s essentially a bed and breakfast place and weekends could be a problem as the centre is closed for five hours on Sundays. At 24 € a day it is cheap – just as well, as it turns out this charge is not covered by my mutuelle, so I will be paying. Evening meals could be a problem (time to start my diet?) but I will continue to get lunch here as part of my status of hospitalisation de jour.

I also get my transport between lodgings and centre paid for by my mutuelle, though the medical secretary here said it was up to me to make the arrangements, and added ‘bonne chance!’. Apparently it is difficult to get the taxis vsl (medical taxis) to do these daily runs because it is not worth their while financially – they make more taking people for dialysis or radiotherapy.

At least this means that I continue to get my daily treatment here for another three and a half weeks.  I especially value my two sessions a day in the pool, which I regard as essential for upper limb injuries, where the water supports all your movements. It’s hard work and it hurts, but I can feel myself improving. Even so, when I asked Delphine if I would reach the 90 degree target before the end of next week she was clearly sceptical, though her language was not as brutal as Dr Belhassen’s .

I saw Dr Belhassen yesterday, by the way, for the injection into my biceps prescribed by the surgeon. So far, no effect, but maybe it will take a day to work  I was however cheered by his evident surprise at the progress I had made since a Friday .  He offered his handshake almost as a challenge  I met it, plus the request to touch my chin, with glowing colours, but failed when ordered to touch my left ear or the top of my head.

i have already told him that my two targets are to be able to drive and to play the cello. Note that cooking and housework are not on the list… …  but perhaps I should have added a third target: to able to take photos  obviously I have not been able to use my camera this winter, but also it is virtually impossible to take photos with my phone : I cannot really hold up the phone with my left hand and press to snap the shot with my left forefinger.  Nor if i hold the phone up with the left hand can i reach high enough up to take a shot with my right forefinger.

 

 

“Stay positive”

How right I was to say that the war was not over. Yesterday I saw Dr Belhassen to discuss the report from the surgeon, expecting that the words “récuperer l’autonomie avant la sortie” would have done the trick.  Autonomy for the surgeon meant the ability to raise my arm 90% and thus be able to drive.

Instead, Dr Belhassen launched immediately into an interrogation as to why I had not followed up the phone number he had given for someone who could provide lodgings if I wished to continue rééducation here.  I said that first I had thought that this was the work of the Assistant Social not the patient and anyhow, that information had predated the surgeon’s report.

He replied, in his usual energetic excitable fashion, that there was no way the centre could keep me on for an open ended time.  He tried ringing the number he had given, only to discover that the lodgings were not available till March. So he said he would sign for another two weeks, but he was dubious as to whether I would reach this target by then.  He then dealt me the blow that stunned me: I should start making practical plans now for living with limited mobility.  He added hastily that this was looking at the worst scenario, but he was not at all sure that this operation could be regarded a success and I needed to come to terms with this.

I pointed out that after the month of obligatory ‘reeducation passive’ the following month had also been mainly ‘passive’ because of first the scare that I might have had a pulmonary embolism and then because of the tendon/muscular pain which they had not been able to explain.  It was only  the last two days that I had really been able to embark on ‘active’ rééducation (in particular strenuous exercises in my twice daily pool sessions and my brief but good exercises with the ergo-thérapeute). Dr Belhassen denied this, both implying that all reeducation is in fact active, ie one is moving the shoulder to some extent all the time, and anyhow, there was a limit to what I could do even now because of the continuing pain.  I pointed out that I was prepared to work through the pain barrier, if necessary with additional pain relief, as suggested by the surgeon.  But this particular appointent had reached an impasse; I left feeling pretty shattered.

My two friends here (both road accident victims, each here for a year or more – my third friend left yesterday, walking stiffly with a spine held in place by a metal frame) were horrified and angry.  Catherine suggested that we tried the place where her sister stays while visiting and Alexia, the animatrice and friend of Catherine’s offered to ring them for me.  This is looking promising: this is a house run by Catholic volunteers mainly meant to provide accommodation for families visiting patients in Montpellier hospitals, but also accepting people receiving daily treatment, provided they can dress themselves (which I now can).

On Monday I’m going to ring my mutuelle (my complementary health insurance) to see if they will cover this and the cost of the daily taxi to and from the centre (the house is about six km away and public transport is too difficult).  I reckon the bill for lodging and taxis could be for about 1000€ for a month.

At supper my friend Marie-Laure reminded me how much progress she had seen me make over the last few weeks.  At the end of December I was eating with my left hand only, now I’m cutting up my food myself and even managing (with some effort!) to get a soup spoon to my mouth.  Ignore Dr Belhassen, she urged, think of the progress you are making and stay positive.

Battle won. War not over yet.

Another tiring day.  I had just finished drafting a letter to my surgeon and passed it on to Marie Laure for comment and correction, when I bumped into Delphine, the ergothérapeute. Ah, she exclaimed, so you are getting to see your surgeon today!

Dr. Belhassen had phoned Marion Bertrand last night and the 1 February appointment had been brought forward. I wonder when Patricia, the medical secretary was going to tell me… so I scrapped my draft letter and asked Patricia for the papers and scans to take with me this afternoon.  (Another minor panic when Patricia first denied the existence of a post-xmas scan – and then found them lying in a pile of chaotic un filed documents in their office!

As soon as Marion Bertrand heard me describe the main pain as being like an elastic band, she diagnosed the problem as being inflamed and fragile biceps. She confirmed there was no damage to the prothèse itself – just painful, sore tendons. She regretted the last month’s ‘passive’ rééducation programme. Now, she said, I would need intensive, painful, active rééducation to recover lost ground, probably with increased painkillers before sessions and ice packs after. Wow, I have been warned.

We discussed the availability or non-availability of physio services in le Vigan and I disabused her of her perception of the hôpital du Vigan as a suitable place for treatment.  She confirmed that the centre Maguelone’s desire to get rid of me is tied up with pressure from the social security system to keep to standard protocol stays for various operations. Nevertheless, she has marked in her report that I should stay here until autonomous, which she defines as able to raise my arm 90% and thus able to drive (!). Thereafter she said I will need to continue regular physio and pool sessions for months but if I can drive I can take all day if necessary getting to services in Ganges if nothing suitable is found in le Vigan.

Im not sure where this leaves me in terms of staying in the centre or being farmed out elsewhere.  I suspect I will be allowed to stay for a few more weeks – I’m praying I will be fit to leave by the end of January.  At one stage today the medical secretary thrust a name and phone number in my hand. Apart from the fact that this is irregular – it is up to the centre not me to make arrangements for my departure, I’m firmly doing nothing till dr Belhassen is here again on Friday.

I can see that another problem for the centre is that it is currently half empty, following the Christmas period. But Montpellier’s surgeons have been back at full speed since Monday, so next Monday I reckon we can see a huge influx of arrivals.  This does make me feel bad when I see people with far more serious problems than mine. At the same time, regaining the use of my right arm is important for me!