Day 51-53 – 5th-7th February 2012

Apologies that I’ve had a little break from posting daily news – I’ll be right back on it from today. My absence has been due to friends visiting, busy schedules and beer!  However, before I bring everyone up to speed with the last couple of days here is this weeks menu…

Menu

I Bag Packing @ Tescowanted to mention the amazing fundraising efforts that many family and friends have put in over the last weekend.  On Friday was the KTF quiz and raffle, organised by Kevin & Janet Tarpey which by all accounts was an amazing night and raised £1700 for Jenny’s cause.  Quite a few people who attended that event then also gave up their Saturday (the next day) to help with the KTF bag packing at Tesco’s Bidston.  This was organised by Cathy & Gemma and with everyone’s efforts over £1000 was raised on the day – many thanks to Tesco’s for their support and everyone who donated.  The real stars are the people who have given up their time (not just last weekend) to raise much need funds for Jenny’s treatment.  Let’s not forget that this treatment is life-saving and would only be possible with everyone’s efforts and generosity.  We can’t thank you all individually at this point but its important that each and every one of you realises that your contribution, however small, is guaranteed to make a difference – you are all heroes!  I’ve uploaded the photographs from Damsy here.

Where shall I start with the happenings here?  I suppose were I left off on Saturday would be a good place.  We met with Chris & Debs at the local hotel here in the village, for a meal with quite a few friends from the clinic – Alex, Barbara, Michelle and Stewart and we also met Tony, Sonia and their daughter Ali for the first time.  They arrived on Friday (I think) from Perth, Australia.  Chris & Debs joined us all for a nice meal (where most people ordered steak – Jenny had pasta) having drove straight from the airport and successfully managing to miss any major delays at Heathrow due to the snow.  It was the first time Jenny had been out of the clinic properly for some time and certainly the first time we had been out for a meal since we were with Dave & Sharon between Christmas & New Year.

Meal @ Kurhaus Meal @ Kurhaus

It was amazing to see Chris & Debs.  They’ve been great friends over the last few years and Chris has always been supportive both personally and professionally and I’ve learnt some important lessons from him over the years (I’m not sure he is aware of that) and Debs has always been a great listener and great support to Jenny.  Following the meal we returned to our room which resulted in some beer being demolished and Debs having a drop of wine.  They were also bearers of gifts.  I received a thermal t-shirt and some creme eggs from my parents and Jenny got a small electric fan (much-needed), baby wipes and pyjamas.  Chris had got me a Top Gear book and Debs had got Jenny a lovely picture, Jo Malone candle and a new addition to the good luck charms – christened “Freedom” as it helps Jen avoid the panic attacks (Thanks for the help on this Debs)…

"Freedom"

We met Chris & Debs for breakfast on Sunday – this was the first breakfast Jenny had been to for probably 3 weeks.  It was decided that following a little rest we would split into 2 teams (boys & girls) and head our separate ways for the afternoon.  Debs & Jenny were going to relax at the clinic whilst Chris & I headed over to Nidda to catch up on things and sample the local brew.  Now, up until this point any alcohol I’d consumed since being here had been in moderation and the plan was for this excursion to be no different.  We set off walking to Nidda around midday in freezing conditions (it had been -16°C first thing in the morning) and made the pub for 12.30pm.  We found out that the pub served beer in 1 litre glasses and it became clear that we may be there for some time.   

Oh Dear! Oh Dear! Oh Dear!

We made it back to the clinic around 7.30pm via a taxi and I was a little worse for wear!  Chris seemed a bit more sober but I’m not sure as I went off for a cup of tea (I think) to be found 90 mins later by Debs having fallen asleep in the library!  It’s official Lord McGinty is a bad influence!

Asleep

Yesterday saw the McGinty’s return to the UK in the afternoon after having breakfast and spending the morning with us.  It was great fun to have them over and had been looking forward to it all week.  The beer situation is getting chalked up as “a blow-out” based on the last 7 weeks pressure.  Much needed I felt but now parked until I at least get back to the UK.  Before they left, Chris showed me a piece of writing that I felt was worthy of a mention here.  Chris & Deb’s youngest daughter Grace is 12 and I find her intriguing.  She has something going on behind her eyes which indicates a budding genius but I’m not sure what.  A star just waiting to be born…

“My name is Grace and I have hair as light as a light bulb, but that doesn’t mean I’m bright, but I know sums like 3+5.  My eyes are as big as blue pools where no-one ventures; just like me, no-one knows what’s happening deep inside me.  My eyelashes are like the ones on cows, long and thick, sweeping away like a brush on cardboard, although my eye lashes feel as smooth as tiles.  My body is as thin as a piece of paper, rapid  in the wind, but strong when I want.  You can draw all over me, but I can rub you out when I get annoyed. My personality is like a dog’s nose, funny and cool (I wish). I giggle like a tickle and I can stop when someone tells me to; I then giggle inside.”

Just after Chris & Deb left we saw the return of Hilary & Arthur who arrived mid afternoon on Monday.  We have been awaiting their arrival as they were amongst the very first friends we made here in the clinic, along with Cathy & Dick (who arrive back again on Wednesday) and John & Mary.  Hilary made her last visit on her own and I was glad to see Arthur return with her this time as he is great fun and always manages to raised a smile on both mine and John’s faces – it was also his round!  We haven’t seen much of Hilary yet as she has had her whole body hyperthermia today and was running around getting a few things organised yesterday evening.  I understand from Arthur everything has gone according to plan today and she is recovering well.  I called up to she her this evening but she was asleep so no doubt we’ll catch up with her tomorrow.

Last night I went out for a couple of beers (definitely only a couple!) with Fiona’s husband Mike who was due to return to the UK today for work.  Mike had mentioned last week about touching base over a beer before he left and we headed off to the Kurhaus hotel for a couple of hours.  Fiona is due to complete her latest cycle of treatment this week and flies back to Scotland on Friday, however Mike has recently started a new job and needed to fly back a few days earlier.  These are yet again another great couple and one we met early on in our first few days here – this is now Fiona’s 3rd visit since we arrived!  The good news is that she looks to be making improvements which is fabulous.

Yesterday morning saw the IV morphine taken down and replaced with oral medication.  We’ve been here before with limited success, but this time Jenny was better prepared mentally and the dose was more tailored to her needs.  The switch was done mid morning and so far everything seems to have gone according to plan with Jenny even having small occurences of “pain-free” time.  It’s still early days but we have had no real problems today either.  Previously the panic attacks have caused anxiety and distress and were a major contributing factor to why she returned to IV morphine a couple of weeks ago.  This time she is better prepared and in a stronger mental condition to handle the switch.  She has also devised some small routines, with Debs and Fiona, to ward off any potential panic attacks should they arise.

Awaiting a procedure at GießenToday (Tuesday) was our scheduled appointment (the 2nd!) for Jenny to have a portacath fitted at Gießen Hospital.  We left a 9.15am for the 35 minute journey by car.  This was a big test for Jenny and her health, as we need to see how she could cope with travelling in a car etc.  I’m pleased to say she coped brilliantly and managed very well.  However, we didn’t have the procedure as there are some concerns over her blood and its ability to “clot”.  Since the blood clot she suffered in her lungs a few weeks ago, she has been receiving heparin injections to thin the blood and prevent any additional clotting and because of this her blood presents a higher risk in procedures such as inserting a portacath.  Our options were relatively simple – we had 3.  We could do nothing, we could proceed and risk it or we could run some blood tests and return at a later date for the procedure armed with the knowledge that the blood consistency etc would be known in advance and therefore any complications (which are in the low risk category) could be easily dealt with.  Based on our history with procedures and potential issues we both felt that the 3rd option was the one for us and we are now booked in for the procedure first thing Friday morning.

So, how is everyone else getting on here?  Well yesterday I heard from Renae’s mum Tracey who sent the following email about Renae’s 2nd operation.  We all continue to wish her the very best – to the bravest teenager I know x

Just a quick email to let you know have just seen the Doctor after surgery and all went very well.  They removed one existing and found one more tumour on the scan (a little deeper in the lung) and also one small one on the top part of her lung.  All were removed successfully with very little tissue damage.

We will get to see her soon in ICU.  Surgery was later than we expected and she was her usual calm, brave self.  We were good too for her last operation – no tears just relief.  More info later as all is good  One step closer to home.

Love Mark, Tracey and one Sore Homesick Princess  x

Ney was also due his first chemotherapy today (Tuesday) back in Queensland.  I had an online chat with him and Sylvia a couple of nights ago and he was all set for his treatment and infusions.  I’ll catch up with them soon and report back on his progress.  There is also great news in the “Postle” camp as Mary has improved significantly over the last 24 hours.  She had taken a backwards step over the weekend and John had to postpone today’s flight back to Australia as she was clearly not well enough to travel.  Today she was due an MRI scan at Gießen and tomorrow she has a follow-up neurological appointment to ascertain her condition but she seem much more herself and managed dinner this evening where she was star of the show at our table.

There are things that frequently make me think “what a small world it is” and whilst we were leaving the hospital today this is what our car was parked next to (it seems I can’t get away from work wherever I go!)…

Surveying @ Gießen Hospital

 

Categories: KTF | 1,978 Comments

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1,978 thoughts on “Day 51-53 – 5th-7th February 2012

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  47. June

    Jenny and Andrew,
    Glad you both had a great time with Chris, Debbie and other friends…a lovely meal and good time by everyone…especially Andrew, a “BIG DRINK” was had, sleeping beauty seems an appropriate nick name for you..but you are worth it !!!
    Jenny hope the transition to oral meds is kinder to you, and the panic attacks have subsided some what.I’m sure once the the portacath will be fitted fine once your clotting ratio has settled…hopefully Friday will be the day.
    It is going to be busy for you both with the return of some of your friends at the clinic and the arrival of Cath, Justine and Helen.
    The fundraising weekend went well. Bag packing was great with all us KTF troopers ,”KEEPING THE FAITH” big style, all for our worthy cause…warrior princess Jenny ! Keep strong little soldier and remember, Hope can soften some of the worst blows that life delivers and the love of everyone for you both will always bring be there…hope is faith holding out its hand in the dark…sending you a HUGE hug, love
    June and Co..xxxxxx

  48. Jane

    Great blog today Andy for a variety of reasons. Great to her Renaes surgery was successful, great to see Jen out and about even though it was as successful as you hoped and great to see you pissed asleep on the couch!!!! Results all round is say. Jens coming along each which is wonderfully news. A small step here and there is leading to giant improvements , keep up the wonderful work xxxxxx lots of love xxxxx

  49. Ann

    Hello Jen and Sleeping Beauty! ( Chris tells me that this is your new nick name around the clinic now after Saturday’s drinking session – a well deserved one at that!) Great for us all to have the blog back though!
    Lovely to see you Jen and what super news that you were able to go out for a meal with everybody. I’m sure the visit from Chris & Debs has been a real boost for you both. Good news that the panic attacks have stopped and the switch of your medication has gone well. Best to be on the safe side until the results of your blood come through but sure that everything will be fine for your porthacath to be fitted on Friday, will keep everything crossed. You must be looking forward to seeing your next batch of visitors on Thursday, enjoy your time with them.
    So pleased to hear Mary is improving again and lovely news about Renae doing so well, what an amazing brave girl she is!. Hope Ney’s treatment goes well for him.
    Looks as though you can leave a tripod and instrument unattended in Germany without it getting robbed!
    All our love and kisses as always Mum, Dad and Girls xxxxx

  50. Laura Oakley

    Hi Jenny. So glad you have managed to venture out and think you were very wise to postpone the porthacath until your clotting has been tested. Brilliant that you have got some help with the panic attacks and long may they stay away !
    Andy, you soooo deserved a blow out, at least you got some proper (alcohol fuelled) sleep that night.
    Brilliant to hear all the comings and goings at the clinic and if the film ‘the secret’ has any truth in it, your positivity is drawing all these lovely people to you, who are bringing their strength to you and Jenny.
    Thinking about you both all the time and sending you big hugs and wishes-KTF.
    Laura Oakley

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