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.

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Day 50 – 4th February 2012

So, here it is – day 50 is upon us.  If someone had said to us at the beginning of this journey that we would still be here 50 days later I’m not sure what we would have said – but we are and it is what it is.  I was starting to wonder if anyone had ever stayed here longer.  Amongst the current patients / support we are certainly the “longest-serving” but I understand that Tim from Adelaide was here for 4 months solid!  I’m quite happy for him to maintain that record.

Yesterday Jenny woke up a little down and today she has hardly woken at all.  She slept most of the day until about 4.30pm and that tended to help her energy levels.  She woke up very positive and got herself washed and dressed with minimal assistance.  The antibiotics have been continuing as have all the usual infusions and we are looking a little better each day.

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Day 49 – 3rd February 2012

Today Jenny woke up a bit “blue”.  I’m a little surprised at this as she had a great day yesterday and also managed to Skype with her cousin Jo before she fell asleep last night – it just emphasises to me the roller coaster of emotions that she is going through and having to cope with.  It didn’t last long though as her fighting spirit kicked in and she quite quickly recovered and headed off for a shower – walking all the way there and all the way back herself.

We met with Dr. Herzog this morning, who continues to be impressed with Jenny’s steady progress.  Jenny spoke about her desire to remove the syringe driver (morphine) at some point as it is clear that to continue on a semi-permanent basis would hinder her physical progress.  It has been decided that we are going to switch the medication again from IV to oral on Monday, with a 25% increase in the dose this time to combat any withdrawal symptoms.  Jenny has a few days to mentally prepare and we are confident we can avoid any panic attacks this time.  We are all in agreement that the supplementary oxygen can also be reduced and we will try to lower this in stages over the next few days and that towards the end of next week we should aim to have a portacath fitted with a view to coming home soon after.

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Day 48 – 2nd February 2012

It was an early start for me today as I wanted to see Fiona, Amber & Ellie depart.  They were due to leave the clinic at 8:30am and I needed to return the Downton Abbey DVD they had lent to us before, they left (we’ve now also watched the recent Christmas special – Series 3 comes out in September).  I was down for breakfast at 8am (which is unheard of for me at the moment) and most people were surprised to see me surface at that time.  I suppose an early night helped.

Michelle, Stewart, Daphne, Russell, John & I had breakfast with the “Mackenzie Triplets” before John and I went to see them off from the back of the clinic.  They had written letters to both Jenny and I which were lovely to read and very heartfelt.  We have grown close to all 3 of them and Fiona has made incredible progress since she arrived on the 21st December.  Prior to their arrival Fiona and her daughters had been in Fresno, California for 6 months of treatment and we saw little of them during the first week they were here, as Fiona was quite unwell.  However, we have all seen significant improvement in her health going from being wheelchair bound with supplementary oxygen, to walking quite normally and mixing with everyone in the clinic.  They arrived on a first class flight from the US with medical assistance and a hired nurse and she walked out of the clinic this morning to board a normal BA flight back to the UK – quite astonishing.  Her “jock-straps” came in the form of her 2 daughters who religiously cared for their mum and took it in turns to stay with her during each night.  They had a second bedroom in the clinic which allowed them to relax every other night between caring for their mum.  They are both in their mid-twenties and like Renae, are wise and mature beyond their years – no doubt due to their experiences with cancer.

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CancerCom

Following a discussion with Ney a few weeks ago, he spoke to me regarding an idea him and Roland had for a site that would allow everyone to stay in contact and also share specific, relevant information amongst its members.  I spent a few days pulling a few things together and came up with CancerComCancerCom, an online site for the use of past, present and future patients of the clinic.

I’ve been running the site for a couple of weeks now and there are members from as far afield as the USA, Mauritius, Canada, Australia and the UK with people regularly contributing and sharing information.  The idea is to keep the emphasis of the site on the Fachklinik Dr Herzog as opposed to it becoming a general cancer site in order to keep the information relevant and specific.  There are plenty of generic cancer forums / sites and I’m hoping this one allows a small number of patients and support who have used, in the process of using or are thinking of using the services of the clinic to maintain links.

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Day 47 – 1st February 2012

We have now officially entered February – a month which we thought would see us return to the clinic (we certainly didn’t expect to still be here).  Today is the birthday of Lisa Marie Presley, Garth Brooks and Duane “Dog” Chapman and would have been Clark Gable’s 111th, Sir Stanley Matthews’ 97th and Boris Yeltsin’s 81st birthday.  The 1st February was also the day in 1992 when the cold war official ended.  In the UK, in 1952, TV licence vans were launched and in 1984 the half penny ceased to be legal tender.  In the Iran in 1979, Ayatollah Khomeini returned after 14 years in exile and in 1835 the 1st February saw the abolition of slavery in Mauritius – for us it was Day 47!

Back to the present day and I was hoping to announce something equally significant for the above list, here at the clinic – but alas, it has been quiet once again.  Jenny had another relaxing day which bagged a bit more healing time.  Her general health is improving and she met with Dr. Herzog late morning.  He has indicated that we maybe close to re-commencing with some local body hyperthermia treatment soon which is great news and clearly demonstrates Jenny’s continual improvement.  Her liver enzyme numbers also continue to improve.  Her bed sores aren’t getting any better due to the amount of time she is spending in bed and I’m hoping an increase in light exercise may help.  She is also having a small problem with the central line again – I certainly think it is time for a port once she is well enough for the journey to the hospital at Gießen.  The line keeps moving and is slowly coming out which is understandable due to the amount of use that it is getting with infusions and IV antibiotics.  We were close to losing the line last night but it has been saved for the time being.

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Day 46 – 31st January 2012

I awoke earlier than usual this morning after a very restless night for me (don’t know why).  Jenny slept well all things considered, and didn’t wake up until around 11am.  I showered and then caught up on some emails that I had been meaning to write for some time.  I also felt it necessary to start writing today’s blog a little earlier than usual based on Janet Tarpey’s post on Facebook.  Then I saw Betty Bee’s latest blog post and did chuckle to myself…

Keep Calm & Blog On Keep Calm & Stop

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Day 45 – 30th January 2012

Last night was a difficult night for Jenny with pain so the morphine level was raised, temporary, in order for her to get comfortable.  However, this morning and through today her pain seems to be more stable and I think its fair to say that our aim in terms of pain is for a “comfortable pain” as this is manageable for her on a daily basis.  To be completely pain-free is probably a little optimistic at this stage.  Jenny once again refuses to lie down and continues to fight on all fronts – determined to Keep The Faith.

Today she has managed so much – she has conquered her panic attack issue, been on top of her medication, made it downstairs for lunch and dinner as well as a massage and being in and out of bed numerous times.  Considering the weekend we have had, which has been tough to say the least, she has relegated some of the issues we were struggling with and emerged victorious on the other side.

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