Day 58 – 12th February 2012

Sunday is always quiet at the clinic as those patients who can get out and about, try to do so as there are no treatments during the day. Saturday was the worst night Jenny had experienced for some time due to pain control and general “uncomfortableness”.  It seems we are reaching a familiar crossroads as the level of morphine Jenny “thinks” she requires is leading to a psychological dependency, as much as a physical one.  Unlike a lot of painkillers, morphine doesn’t have a maximum limit and in theory the dose can continue to be raised depending on the patients requirements.  However, like most drugs, as the dose is raised then other effects become a factor and in Jenny’s case the major side effects are confusion, fatigue and disorientation.  We are close to the point where I think the level of morphine she is having on a 24 hour period is a bit high and causing some of the above side effects.  She is waking up during the night and immediately requesting a morphine infusion before even thinking about it (as if it’s the first things she should do when she wakes up).  During last night if Jenny thought a morphine infusion was being prepared then her pain levels would reside, with the same thing happening if she was given a relaxant.  I’m not suggesting she is making up the pain but is simply “expecting” pain when she wakes and is therefore associating this with needing instant relief – it seems like a replacement psychological issue for the earlier panic attacks.

What happens now?  Well, we have a few options.  The first is to ride it out and see whether the issues are part of the switch from IV to oral meds last week and based on the length of time and high dose Jenny has been getting it make take a little time for the body to re-adjust.  We could ask for the IV meds to be re-instated which would probably sort the problem in the short-term, but gets us nowhere in the long-term as we would need to re-address this again at some point if Jenny is to return home without needing full-time nursing care which is what would probably be required with a syringe driver.  The third option (and my preferred one for the next 24-48 hours) would be to try to work on her “desire” for morphine and replace it with a tablet drug which she has prescribed, but isn’t convinced that it works as well.  We’ll discuss this with the doctor at some point but it is difficult for Jenny to fully comprehend all of these issues at the moment as she is a bit off her box on the morphine.

On a positive note her vital signs are stable, her oxygen requirements are lower than before and when comfortable she is coherent and can hold decent conversations etc.  She has tended to yo-yo a little bit over the last 4-6 weeks with some days being not too bad and others being difficult for her and at the moment she seems to be in a “difficult” stage.  She does have small amounts of food during the day and receives IV glucose and energy drinks as well.

Today also finally saw the departure of John & Mary.  Regular readers will know their story and understand how difficult a time they have had over the last 5 weeks with various attempts of returning home to Sydney, Australia being thrown up in the air at the last minute due to Mary’s health.  They finally managed to “escape”, but not without quite an emotional farewell with several of us who have grown close over the last 2 months.  It is unclear if they will return to the clinic as Mary is able to receive various treatments in Australia which may be more suited in the future.  I got quite close to both Mary & John (John in particular) and we have certainly helped each other over the last few weeks.  They are going to be greatly missed here at the clinic.

Jenny, Mary & John Andy, Mary & John

Over the last day or two I’ve got to know Lisa who is here supporting her father Mike.  They are from Queensland, Australia and Lisa is a junior doctor.  She is great fun and has a bubbly personality which makes her instantly likeable and she fits in well with everyone.  I found out yesterday that she is a pretty good skipper (rope not Lisa & Sylviaboat) and she has agreed to teach me to skip like Muhammad Ali (or maybe like this).  Now that may take some time but one of the first things I bought when I got here was a skipping rope so you never know.

I made it back into the gym today with my new gym buddy Alex, who doesn’t hold back.  This is great for me as when I getting to the gym is usually the motivational barrier I need to break – once I’m there I enjoy it.  I’m not sure how long Alex will be here for but our plan is for regular sessions now.  I’ll be a bit sore tomorrow but no pain no gain and as an added bonus I have a massage with Rochelle.

John & Mary made their escape at just the right time as on the menu for dinner last night was herring – erm no thanks!  A few of us decided that we would eat out and the venue was set as the Kurhaus hotel.  Hilary & Arthur, Cathy & Dick, Sylvia, Lisa and I had a lovely time and even managed a collective table dessert (pud!).  The scene that unfolded in the restaurant once the dessert fridge had been pointed out was a sight to be seen.  Discussions flowed as usual with people around the table coming from the UK, USA and Australia.  By the end of the meal everyone fully understood correct napkin etiquette, what a pud (dessert), the value of a vegetable patch and the concept of dogging!  A few other patients must have felt the same way about the clinic’s evening offerings and also made it to the Kurhaus for their dinner (including Tony, Sonia & Ali and Jackie).

Proper Food Proper Food
Tony, Sonia & Ali The queue for dessert!

We’ve had some cold weather here over the last week or two and now and again we wake up to a blanket of snow in the village which makes the whole place very pretty.  Dick has very kindly emailed me a couple of photos around the village after a recent snow fall.

Snow Snow
Categories: KTF | 2,878 Comments

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  46. Rebecca

    The psychology of pain is a hard beast to tame but keep at it and I’m sure you’ll win this one.
    Rooting for you every step of the way. And it really is every step…just tiny steps…5 minutes at a time.
    You’re a great gal and you will overcome this.

    Andy, I shouldn’t laugh but you did make me chuckle with the ‘off her box’ phrase!

    Lots of love from all of us. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  47. June

    Jenny, feel for you so much….those demon panic outbursts are trying to get the better of you, and getting to grips with the transition of your oral medication is problematic…you are the strongest person I know and are at the hardest part of your journey…this too will pass and the warrior princess will rise again always KTF…where ever there is human fear there is an opportunity to keep hope in your heart…strive little soldier ..stay vital !
    Best wishes go to Mary and John on their return home..good luck with your treatments back in Australia. It must have been an emotional time for you all. You have all grown so close and for all the times you have shared happy times in the face of adversities in all your lives especially between each other at the clinic, the friendships you have formed will stay precious.”Let us be grateful for the kindness of friends, they are the gardeners who make our souls blossom”…Proust…
    Always in our daily thoughts…love to you both..June and Ron xxxx

  48. Jackie James

    Thinking of you both .. KTF!!!

  49. Jo

    Hi Jen & Andy, sorry to hear bout the meds situation, it does definitely sound like a psychological issue which can be very difficult to deal with. I hope your anxieties get better over this Jen.
    Good to hear your getting back to the gym Andy, exercise is very good for your mood as well which must be low at times.
    Glad Mary & John finally made it home although you’re both gonna really miss them but it sounds like as 1 lovely lot of people leave they are replaced by another lot!!
    We are looking forward to seeing you both soon.
    KTF always
    Love
    Jo
    Xxxxxxxxxxxxxxxxxx

  50. Ann

    Hope Jen’s medication gets sorted out in the next couple days and she starts to feel more comfortable and have less pain so you can think about getting home, can’t wait to see you both, everything seems to have come to a bit of a standstill at the moment but hopefully things will start moving forward again soon. So pleased Mary & John have managed to leave for home, hope they have a good journey and wish them both well. Lovely to see photo of Sylvia, she looks well, send her our wishes. Glad you had a good meal out at the hotel with everybody, can quite understand why you and everybody else gave the herrings a miss, can think of nothing worse!
    The village looks lovely with all the snow, it has been very cold in Liverpool last week but we have managed to escape the snow thank goodness! today has been a bit milder, quite dull and dry and the girls have had a good run down at Hale.
    Enjoy your skipping lessons, used to be a very good skipper in my youth! glad you are getting back into the gym. Keep strong and keep fighting both of you. All our love and kisses as always Mum, Dad and Girls xxxxx

    • Georgina

      Was so lovely to Skype last night. We think about you all the time, and today I asked my guardian angel formerly known as Aunty Beatty to skip over to you and ensure you have a bit of her care, love and attention!!! she was and is still by far my biggest influence in all things not of this world….. Jenny I hope by sending her attention your way she will be able to give you a boost, onwards and upwards we love you both very very much. KTF ing all day ever day. Love us G,G D, J & Shady xx

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