Mandi’s blog

ICH KANN ES SCHAFFEN

I have been places since Pip died in January, and it was only when I went out with David the day after his death, I realised I hadn’t left the village for ……..5 months?  Is that right?  We went to watch a cricket match in Canterbury, in August.  He, Pip, had been signed off by the oncology department and was in the hands of the GPs and receptionists who were brilliant.  Given the hindrances the palliative care team have to dance around, they were really good.  It is just a shame that the framework they prescribe from is structured the way it is. 

So I emerged into the daylight.  Started picking up the bus, and good old Sean was there to scoop me up and deliver me to the next travel hub.  Over the next few months as it got warmer, I ventured further afield and by June had been up to Faversham numerous times and up to London to test the Underground to Clapham.  Actually, Brixton to be precise.  None of the Clapham stations have a lift.  Quite important if you’re in a wheelchair.  Only a third of Underground stations have step free access.  Talking of which, remind me to tell you of the time David and I were at St Pancras, working our way up to daylight when the fire alarm sounded.

I very much wanted to visit some friends in June but bailed out as I was concerned about Mabel’s ability to negotiate the steps and slopes and paths around their house.  So instead I decided to go to Salzburg.

BA’s website is quite informative, but you can’t really get answers to the questions that really need to be asked until you’ve parted with the dosh.  Having done that, and got access to the magic telephone number it was easy.  Oh, so easy.  You get to talk to a real human bean – and you could even ring back to ask some more questions, and get the same person.  And they remembered me!  I set off a week later with absolutely no qualms at all having ironed out a minor health issue at A&E (circulatory problems) and Heather’s Taxi from the village delivered me to Gatwick the evening before.  I only had hand luggage and had devised a way to attach that to Mabel (which involved a bit of rope and my version of a clove hitch) which I will update, but presented myself at check in as I was not sure whether Mabel would go through the hold or not.  The helpline’s words had been, “If there is room, your chair will go in the cabin, otherwise in the hold”.  Although I would much prefer the former I was assuming it would be the latter and I had checked whether or not some sort of bag for Mabel would be compulsory;  and it was not.  I had a luggage strap to stop her unfolding which is very important as, if you don’t know which bit to hold she will just ‘un-collapse’ herself, but then she’s easier to move around as a manual chair instead of an awkward 23.5 kgs.  The check-in chappie asked lots of questions re weight/battery/connectors which I was able to answer.  There was some concern and muttering about the fact they were lithium and what may happen when condensate may make contact.  But in the end they were happy.  I disconnected them, removed the joystick which went into my hand luggage and showed the ground crew where the luggage strap should go as they wanted to push her to the hold instead of carry.  Fair enough, but it would help if they listened to my instructions as to where the luggage strap should be placed.  I have to admit I did not feel happy turning her over to the ground crew but…….you’ve just got to trust people haven’t you?  I was wheeled onto the aircraft from the Gate and was able to walk down the alleyway between the seats.  There was a very slim chair to hand if I had not been able to walk that very short distance.  I was the last on the plane, doors shut and off we went.  

At Salzburg a different operation.  A very nice Austrian, extremely capable girl came on board and helped me out onto the lift.  It turned out she was a paramedic.  She walked backwards holding her arms up for me to hold/lean on and then wheeled me to baggage reclaim after we had gone down in the clever lift/vehicle which took us to the airport door.  As the luggage appeared on the carousel, a door opened and out rolled Mabel.  Sure enough the luggage strap had slipped and she appeared somewhat deshabille!  Accent please.

Once united and all connections made I was whizzed through passport control and customs and there was my host, Peter.

After a very lovely and very relaxing week in the Hausers beautiful home on the edge of this gorgeous city, it was sort of the same in reverse.  No problems or hold ups anywhere except perhaps a bit of a delay getting me off the plane back at Gatwick.  They all knew what they were doing but it would have been useful if they’d told me.  There was quite a delay in marrying me up with Mabel and much jesting about how I’d be going off to Tunisia next.  I also witnessed the cleaning crew going about their tasks.  A very nice young captain (who looked about 12) asked me if I would like to join them on their next flight but funnily enough it didn’t really appeal.  I hoped that maintaining contact with the Salzburg crew would make sure they delivered ALL their cargo to the right place.  And they did.

So what have I learned?  Get the luggage strap indicator thing sorted.  I’m sitting here now, looking at her trying to work out a fool proof instruction list.  And I’m not sure a bag is the answer.   And if I wrote a list, they wouldn’t read it.  Or carry it.  I can certainly fit it for them, but there’s no point if they want to push her to save them carrying her.   Just had a thought……I‘m going to ask the manufacturer? The wholesaler? Hmmmmmm – dont think it works like that anymore.

I might tell you about the fire alarm at St Pancras next.

Even though Pip is not. But I’m getting it together and, thanks to David, having managed to get back on-line with my blog which disappeared, I will start to regale you with the latest Mabel adventures.

My last post was with the latest Neurologist’s decision not to give me any treatment and so I am driven to try and make my life not so pain riven and to maximise on what I can do.

Give me a day or two to put something together and for those of you who are new to this sort of thing, scroll down to the bottom to get the first post, written 5 years ago. I began this blog with the intention to stick to the disease, not meander off down a route cataloguing the escapades of, say, Huffkin (the dog), but there’s not a lot more I can say. The professionals have signed off on me. But there’s always Mabel and the places she can whisk me off to. And I do think I can add to the world a disabled person inhabits. You can go places.

via his secretary.

”Dear Mrs. Strevens,

I have heard back from Dr. Nisbet with regard to your email below, and he replied:

No evidence to enable either stem cell treatment or disease-modifying MS drugs.

Kind regards”

well……….succinct and true to form

How long has it been? I went to see Dr Nesbit in Hove in May, and here we are nearly in December and I now have the Radiologist’s report on the six scans I have been able to get together.  

The last scan was done in August and the Canterbury Radiologist’s report and release of the scan didn’t happen until the end of October. And we then had another four weeks of Dr Nesbitt instructing his radiologist Dr Panos Koubalis.  You may recall, to qualify for any interest/treatment as a primary progressive patient, lesions have to be ‘active’.   I received the results last weekend; Saturday morning. As I fully expected, there do not appear to be enough changes, or should I say lesions/enhancements to be put forward for stem cell treatment. I still find it hard to understand why my condition has deteriorated so drastically and swiftly when apparently there are no new lesions. Here is the reason why: ‘The high level of lesional burden in the cervical spine may account for the significant disability.’

I could publish the whole report so you can read for yourself what the Radiologist’s professional opinion is, but I am not sure I should do that.  From reading the scan repeatedly I would argue that there is activity, if ‘atrophy’ is taken as a verb, or whether ‘the high level of lesional burden’ is viewed as activity.  Perhaps what is more relevant is for me to hear from Dr Nesbitt as to his opinion on the report and I will be interested to see if he offers me anything. Anything at all. 

To date, since my diagnosis in December 2017, I have received nothing, so why should he be any different?

I may update this when I hear from him. Ive sent him an email asking for a response……….I rather get the feeling he does ‘paperwork’ at the end of the week.

Jubilee weekend coming up and the day before it begins the letter arrives from Dr Nisbet along with his one to my GP (who I have yet to meet), and NH consultant Dr Hari.  The letter to the GP was probably the most descriptive of all the correspondence I have seen from any Neurologist and I will not even attempt to translate it for the purposes of this post.  But the contents of his letter to me, which do not require translation, I will reveal.

With regard to the negative oligoclonal bands, Dr Nisbet does not think it is worth repeating the LP.  Exactly why, he doesn’t explain and should I get to see him again, I will ask.  The horse has bolted on this point and I think it needless to specifically raise this now.

Where he does diverge from all the other consultants I’ve seen, is delving further into the MRI’s to make a case for either stem cell treatment or Ocrelizumab.  The previous consultants were unequivocal in refusing the aforesaid treatments as I did not meet the criteria and anyway the procedures/drugs weren’t worth it anyway.  You, dear reader, will remember this from my earlier posts.

 When I asked Dr Nisbet about the efficacy of these two drugs he disagrees with the Kent and London people and thinks they are worthwhile.

So, I must now chase up (for the third time) the radiologist’s report and find out about the next MRI.   I have a telephone appointment with Dr Walkington in 10 days time so I will raise this, if it still hasn’t materialised as well as the MRI appointment.  I will also try and find out about getting one done privately for Dr Nisbet.   Monday’s homework. 

To clarify:  I need another MRI for deeper investigation by Dr Nisbet.  Having already discovered that these consultants are quite loyal to their own machines I need to check with his secretary where he would prefer I had it done.  Even going down the private route, this will take some while.  Don’t hold your breath.

And on a finishing note those bloody snakes are back.   I find it quite laughable that about 6 weeks ago I was thinking about dropping down 100mgs to 1900mgs.  Whereas a few years back I would have been increasing the dose (I had got up to 2900mgs), but where did that get me?  

That’s for another post. Oh, and just to clarify as I know I’ve spelled his name incorrectly in my earlier posts; he is Dr Angus Nisbet.

I cannot report fully on the consultation with Dr Nisbet as it’s all still in progress;  I will explain in a moment.  ‘Twas a day of two halves and I don’t mean morning and afternoon.  More like journey and hospital.

It was a long day of travelling, but everything was on time and all arrangements were kept, with a few nailbiting moments.

I had made sure I had contingency plans for every occurrence;  the only thing I couldn’t have a back up plan for was if Mabel cast a wheel or something. And I decided that if something happened that I couldn’t deal with, I would just ring the police!  I did ring a magic telephone number given to me by the station from where I collected my tickets a couple of days before travel.  The person I spoke to was so calm, quick and efficient and I had absolutely no qualms about the whole expedition.  The end of May is turning out to be really rather wet and on the day of travel we had rain of biblical proportions. Thankfully, Pip loaded Mable up into the car which saved me one soaking and it at least alerted me to take something waterproof!  Just as we arrived at the station the weather became monsoon-like;  The traffic came to a standstill and people were scurrying around with coats over their heads and a lot of angry taxi drivers were getting cross with everybody.

I rolled into the station, Canterbury West, to be greeted by an extremely pleasant man.  “Good morning Mrs Strevens” he boomed across the concourse!  The gate was opened and he beckoned me to sit near an overhead electric fire which nicely dried out my thin waterproof. Brett explained that I would be accompanied onto the train by Ulysses(!) and within minutes I was on the train and heading towards London on the train which becomes high-speed once it reaches Ashford.

55 minutes later we rolled into St Pancras, and I had in my hand a small piece of paper with all the platform information I needed to board the right train for Brighton.  It was just as well I did, as I didn’t receive the same amount of help I had in Canterbury West, although there was somebody there with a ramp to run up to the train which was just as well because there was no other way of getting off! Well, not on four wheels, anyway.  As I was going down the three levels in two different lifts, somebody in railway uniform hove into view to ask my name and then said they would meet me on platform whatever it was to board the train to Brighton. Having got out of the lift I was then rather nonplussed to see nobody with a ramp and trains were whizzing in and out with everybody seeming to know exactly where they were going and what they were doing.  It then dawned on me that the platform was very slightly raised and watching a train come in I realised that I would be able to just roll on with no need of a ramp. Which is exactly what happened.

And off we set for Brighton.  An hour and a half later I rolled off again, consulted the map app on my phone and set off for the 15 minute journey on Mabel towards the hospital. This was the one bit of the journey that proved to be a bit hair-raising.  The pavements were really narrow with little or no margin for error and the first one I encountered beside quite a busy road, had an alarming slope towards the curb, which is not one of Mable’s favourite things.

Added to which there were no let down curbs on two of the roads I had to cross but thankfully a curb at that point was rather worn which meant I could drop off it without too much of a bump and get up the other side.  I arrived for my appointment 25 minutes early and then settled down to wait.

And wait.

And wait……… Dr Nesbit appeared out of his consulting room and immediately apologised for the delay. It had turned out to be ‘one of those days’ with all sorts of unforeseen things happening. Unfortunately this unforeseen thing happening wasn’t written into my contingency plans, and apart from anything, all the journey plans and help at stations (which I would need back at St Pancras to board the train – and Canterbury West to get off) would be completely thrown into disarray. So I had to say to him that there was no way I could over run my schedule and he fully understood and wasted no time in getting down to the reason I was there! I will now be brief and just say that he was extremely nice, and of all the consultants I have visited he is the one I found most approachable and kind. He appreciated the letter I gave him from my NH consultant in Canterbury to my GP, which was written in the style and format doctors understand. Therefore he did have an immediate grounding of my case.

I explained to him why I had made an appointment to see him (see my former post) and I made it quite clear I did not expect him to wave a magic wand, or shunt, but I made a point of raising the negative oligoclonal bands, and whether the problems I had with my eyes back in 1986 were possibly the beginnings of MS or not.  So with the 30 minutes I had with him he was able to assess my physical state and see the whites of my eyes, and I left promising to send to him the Radiologist’s report that I had neglected to get. I had the actual MRI scan on disc but I had forgotten that the consultants appear to rely on the Radiologist’s interpretation although I did end up leaving that scan disc with him. Since then, I have spoken to the Radiology department at Kent and Canterbury Hospital who are going to send said report to my GP so I can then collect it and send on to Doctor Nesbitt!  Since returning to Kent, I have been in touch with both his secretary and accounts manager to request that perhaps we could complete the consultation before I pay his bill!

To return to the other half of the day, the journey, I then got back to the station by using the bus service, which was as brilliant as my friend Sean’s in Petham, And I just got back to the railway station in time for the train.

I wasn’t particularly happy negotiating the sloping pavements with inhospitable kerbs.

A man appeared at St Pancras with a ramp and another speedy and on-time journey got me to Canterbury West where I was met by another nice man with a ramp!  Day done.  I slept quite well that night!

Yes a lot has happened, one of which is learning a very simple form of Mahjong.  And with bridge online three times a week plus my piece of music a day from a Year of Wonder by Clemency Burton Hill and a poem for every night of the year, my time is being well spent.  Add to that, operas in alphabetical order (I’ve got to G) each day is full of beauty and inspiration.

Fit into that the time I sit in the greenhouse where I can still just about prick out seedlings (left handed) and take cuttings; but to be honest just sitting in there and watching everything grow around me brings me a lot of pleasure.  It’s extraordinary what you see, when you actually stop.

And apologies for the huge gap since my last post.  The reason is simply I have had nothing to add except mundane, routine stuff with regards to my health.  

Although I have become a granny!  Certainly NOT mundane and hardly routine.   Lily Isabella is a positive delight and I could fill this blog with beautiful photographs and anecdotes of the young family’s adventures so far.  Her passport is being well exercised!   But I must resist that temptation and concentrate on the real purpose of this blog.

Back to mobility, Mabel is still going strong and I have some fairly hair raising rides around the garden and negotiating tree roots, low branches and slippery paths. But so far so good and I’ve only ended up in the flowerbeds a couple of times. 

But my great excitement is the local bus service and my new best friend Sean, who is the driver of the 620 bus which visits the village at least a couple of times a day.  It visits more often during the term time. I still haven’t quite got the hang of the service times, but I’m not overly sure that matters because Sean will quite often take his own little detour in order to give a service to people who find it difficult to negotiate a problem and public services at the same time. For example, I asked him if he could possibly drop me at the top of the lane from where I could then get the rest of the way to the MS Centre on Mabel. Bless him, he takes me right down to the rugby club car park, where he can then turn round to resume his official route, and I am about 50 yards away from the front door of the MS Centre! He is also a source of information with regards as to who lives where, how often they travel on the bus, whether they are hosting Ukrainians or not, and how long they’ve been travelling on the bus! What’s more, when I return from Canterbury, he drops me at the bottom of our little driveway.  How is that for service?  How do you put someone forward for an MBE?

And I have just obtained a Railcard, so my next excitement will be negotiating Network Southeast to travel to Brighton.  And this is the reason why I am offering this post to you today.

A friend has told me about somebody she knows, living in a different part of the country who was misdiagnosed with Multiple Systems Atrophy and after a visit to a doctor in Brighton has had a shunt inserted.   He has/had Encephalitis and now his life is returning to normal.  Within 24 hours he began to feel an improvement and instead of taking the MSA diagnosis and heeding the advice to just wind down and prepare for the end of his life, thanks to his son he has questioned the diagnosis with positive results.  

I am sure I have not been misdiagnosed, but I have always wondered two things. You may recall from earlier posts on this blog that there was some question as to whether my MS may have begun when I had problems with my eyesight back in 1986.

If that was the beginning of MS then it would mean I have secondary Multiple Sclerosis not Primary which I would’ve thought would make a difference to the drugs I could have been given.  Stable doors and horses bolting I know, but for future use…..?

Also the lumbar puncture I had at UCLH revealed there were no oligoclonal bands.  For the full explanation of this terminology I would refer you to the MS Trust’s website.   If these bands were present it would show the presence of disease activity. Whilst it doesn’t necessarily mean that someone has MS, about 80-95% of people with MS do have oligoclonal banding in their cerebrospinal fluid.   I think I’m correct in saying that before the days of MRI machines a lumbar puncture was (and still is?) a necessary tool to give a diagnosis.  And MRI machines aren’t necessarily the definitive answer;  to quote George Jelinek from his seminal work “Overcoming Multiple Sclerosis”,  ‘It should be noted that a very large review has shown that MRI is not particularly accurate at diagnosing MS…….’.  It is on this basis I am prepared to see another specialist.  So, on Friday, mounted on Mabel, armed with railcards, phone and back up batteries, wearing my best fighting trousers and not forgetting my glasses (might even take a spare pair) I’m off to the Montefiore Hospital on the Sussex coast.   I will also have discs with the MRIs and reports and the lumbar puncture result and report.

This is the seventh specialist I will have seen.  I really don’t hold much by it, so I will not be disappointed if there isn’t a magic shunt, or something.  But at least I get an outing on the train and find out for myself how accommodating people are on the railways when they have a wheelchair to deal with.   If it’s anything like the buses it will be fine.  And I don’t think I’ve ever been to Brighton except putting into the harbour for a night when sailing from Falmouth to Dover. I don’t think that counts!

Life at our new home continues to be as perfect as it could be – health matters aside. 

Pip continues with his chemotherapy.  I think he’s on the fourth lot now which is mainly oral and a mind boggling timetable of when and how they should be taken.  One does wonder what on earth happens to your insides when you swallow something that is recommended ‘you shouldn’t touch’!!

I will update you after Friday’s appointment.

Gosh…..it’s been an age since I have updated my blog. There are loads of reasons but I will not dwell on them now. in fact I’m not going to dwell on anything yet. I have not even been able to enter the site in order to write something, but suddenly, this morning, I have! But I have nothing prepared. So this post is just to let you know I will be updating you. Quite a lot has been going on, so watch this space.

GO –   I hardly even start so I’m not going anywhere.

Whitechapel and Old Kent Road – my sister carried out part of her nursing training in a hospital in Lewisham.  I gather nursing practices have come a long way since the early 70s.

Community Chest – “Doctor’s Fee pay £50”.  I wish.

Income Tax – £200  –  this is why we pay our taxes isn’t it?  Great infrastructure and free health care.

King’s Cross Station – I can’t drive now so trains are the way forward.  I’m after every station I can get hold of.

Angel Islington, Pentonville and Euston – not an area I know well, except for the well trawled Exhibition Halls at The Angel.

Chance? – “Advance to the nearest station”

Jail or Just visiting – Thanks to all my friends and family and Mabel and Huffkin, I do not feel confined or that I’m missing out on anything.  At the moment.

Pall Mall, Whitehall, Northumberland Avenue – a reminder of times past.

Electric Company – Here we are, four miles from the centre of the City of Canterbury and we have had more power cuts in the 19 months we’ve lived here  than either of us have ever experienced in the whole of our lives.  And don’t even ask about our internet connection.

Marylebone Station – perfect landing.  Now, that’s two.

Vine Street, Marlborough Street, Bow Street – adjacent to streets that have old favourite restaurants we used to visit.  Dining out now is a logistical nightmare but at least I get……

Free Parking – except at the hospital, though Pip gets much subsidised rates.

Strand, Fleet Street, Trafalgar Square – and there’s a Chance amongst those –   “Speeding Fine:  pay £15.00” – Mabel is super speedy whizzing up and down the aisles of Waitrose.  Hand brake turns round the latest promotions – makes life a bit more exciting? (Next time you see me ask about the pyramid of toiletries Fenwicks had on display.  Note the word had.)

Fenchurch Street – To add to the collection

Leicester Square, Coventry Street  – Theatre District:  that’s a thing of the past. But then it is for everyone thanks to Coronavirus.

Water Works – all part of the logistical nightmare.   If not on a personal level then on a logistical one.  

Piccadilly – I’ve just come up with my next challenge……David Hockney at the RA.  Do I go up with Pip in the car or on the train?  Now I have 3 stations.  But, still a challenge for Logistics.

Go to Jail – were it not for Mabel that is how I could feel.  But I assure you that I don’t.  But my world is now very small.

Regent Street, Oxford Street  – definitely avoid the latter, too many people. But I would like the wide pavements of Regent Street.  Hang on, another Community Chest coming up. “Receive £20.00 Consultancy Fee”.   I think it works the other way round……and £20.00?  Dream on.

Bond Street – and after the RA I could whizz up the Burlington Arcade for a spot of shopping?

Liverpool Street Station – bingo!  That’s the lot.

Park Lane – perhaps a visit to the roof top bar at The Hilton.

Super tax – £100.00.  No comment.

Mayfair – after shopping in Bond Street, a spot of supper at The Connaught?  Too much choice really. And then I must

Go.

Yesterday I had an appointment with the Neurology consultant at Kent and Canterbury Hospital.   That deserves a post of its own.  Maybe even a Monopoly square?  What was more beneficial to me was the jaunt I had on the bus and around town afterwards………..

If I was a filing tray in the medical world that would be my label.  Or my contents would be.  And what am I hanging around for? In short;  following the cancellation of my appointment with the consultant at the beginning of the year, I contacted the MS nurse.  I’m a bit slow on the uptake but I now realise that only one problem can be tackled per appointment, but through persistence I managed to log with her the issues I needed to raise.  So, she has pushed me off her desk and I now sit in the pending tray of the Occupational Therapist, the Physiotherapist, and scanning departments various.  The Occupational Therapist gave me online swallowing lessons(!) the Physio’ could only manage “pain in the neck” which is how my query to the MS nurse re shooting pains up into my head to the back of my eyes was translated.  The total uselessness of my right side seems to have been forgotten but apparently I’m getting another appointment with another OT regarding my arm.

Oh! And there are Vitamin B12 injections on the way.  Apparently*.  

You may remember that the Consultant I saw in the clinic in Blackheath in 2018 prescribed some steroids which he asked me to try, and then report back to him as to their efficacy.  Having just had a rotten couple of weeks I thought I’d resort to the steroids, which were out of date.   I am sure it would make no difference but on the basis it was something of an experiment I thought it would be best to use something that was fully potent.   So I fixed a telephone appointment with my GP to see if she could renew the ‘script’.  Which, it turned out, she couldn’t do.  So I telephoned the consultant’s secretary for another appointment to get the script renewed.  The appointment was yesterday and, hurrah, the script is on its way either by post or email to the GP’s surgery.  Also Mr Silber has prescribed Baclofen which apparently helps with muscle stiffness, which, I have been advised, may go too far the other way and make the muscles too ‘floppy’ to use.    But at least I’m out of his pending tray for a few weeks and I feel somebody has done something helpful.  It may not be useful but at least somebody in the medical world is helping me.

As to my physical state:  If my left side was as affected as my right I would be completely scuppered.  My left drags my right side around and has to do everything.  So far, so good, except for writing, knife use or spooning food into my mouth.  But I can still pass the spaghetti challenge**!  Buttons and zips, hooks and eyes I can just about manage.  Thank God for the dictation facility on my phone or iPad.  Luckily, my signature has always looked like something between a squashed spider and an ink blot so, as yet, it’s not an issue.   I am trying to be one step ahead of this monster, but it is not easy.  

*They start today – it’s 3 or 4 days since I wrote the above.

**  twirling the pasta onto a fork.  That movement using the thumb and first and second fingers.  I can twizzle left handed!