I am alone in the room that Jenny and I have shared for the past 9 weeks, writing this blog post. It is a post I hoped I’d never have to write, but over the last 3 months I’ve known deep down that writing it could be a very real possibility.
After nearly 4 years of courageous and inspirational fighting, my Jenny died at 5.30pm GMT yesterday (18th February) here at the clinic in Germany with Gemma, Cathy, Helen & I. I had rehearsed how this could all pan out many times, and my defence mechanisms had been sitting to one side in anticipation of her death – how I thought I’d feel and how I actually feel aren’t that different but very little prepares you for the physical and emotional rollercoaster that I’m experiencing right now – just about holding it together.
This will be the last time I’m in this room and it feels appropriate to spend it writing my final post here in Germany. It has been our home for the last 9 weeks and we have shared many happy times with tons of incredible people here and in some way I’ll miss it – it’s become a little bit of a home from home. I’ll blog more about this in a future post.
The next few days are about being strong and organising everything as Jenny wanted it. We all fly back to the UK tomorrow (Monday) and, following the required legalities and paperwork, Jenny will fly back on Tuesday where she will be met by our funeral directors and come home with me until final details have been decided amongst us.
There are too many people to thank individually so I won’t at this stage. There are people who have contributed in many ways that touched both our hearts, and the level of generosity and support we have received over the last 4 years has been incredible and overwhelming. Lance Armstrong once said, following his cancer battle, that he was one of the “lucky ones” – not because he beat the disease but because of how the disease changed him for the better. It is only when you are in a similar situation to him that you fully understand the impact of this statement. I truly believe Jenny and I were “lucky ones” in respect the cancer and I promised her that I would try my very best to continue my life in this vain.
I love you Princess and am so proud of you – Keep The Faith x
Today started with another lie in. I’ve decided sleeping in at the clinic isn’t a major problem as it solves too issues – it means I can get as much sleep as I need and also means I miss breakfast, meaning I only have to worry about eating 2 meals a day instead of 3 (trust me, that’s enough here if I want to lose the gut).
Jenny had a settled night and woke up in good form. She decided she would like to have lunch in the dining room, so we headed down there around 12.30pm. I ordered a 2-egg omelette, which somehow ended up being translated into 2 omelettes, meaning Jenny ended up with an omelette she didn’t really want. However, it worked out for the best as she did enjoy it and resulted in her having the first proper main meal in several days. Dr. Herzog also noticed she was in the dining room and came across to let her know he had clocked the fact she was downstairs and out of bed (big tick in the box). we haven’t quite cracked the seating in the dining room for Jenny yet so she still struggles to get comfortable, but we’ll work something out I’m sure.
Last night was reasonably settled, but not quite as easy as the previous night. Jenny experienced some pain during the night but nothing that was close to the previous few nights, and nothing an infusion or two couldn’t solve. I made breakfast this morning to make sure I saw Arthur & Hilary before they left to return to the UK and then promptly fell asleep, when I returned to our room, until around midday when Jenny was visited by Dr. Rosalis and Dr. Dimitry who were both pleased with her progress and agreed that the syringe driver was the correct decision. We need a few days of stabilisation before making any major plans but we did discuss maybe looking to have the port fitted on Monday.
This afternoon Jenny had a foot massage with Rochelle whilst I went to the gym with Alex & Lisa. I was looking for some instruction to improve my poor skipping skills from Lisa, who had said earlier this week that she could skip a bit – erm not half. “Shit hot” is the best way to put it. She has clearly spent a lot of time skipping and was a member of a team / club back in Australia and can do all the fancy stuff you see on You Tube – no really! I’ll try to get a video of her to post up to prove the point. I’ve always wanted to skip properly and here is a perfect opportunity to learn from someone who can potentially teach me. Not only can she skip but we found out she is part-human, part-machine when it came to a workout, much to the detriment of Alex & I. The abs workout we were both put through, with a medicine ball, may prove very sore tomorrow – there were even forfeits for non-compliance!
I wrote a post on day 40 which mentioned that if anyone would have said to us before we left the UK that we would still be at the clinic after 40 days, then I wouldn’t have believed them…well here we are at day 60! Sixty is the sum of a pair of twin primes (29 + 31), as well as signifying a diamond wedding anniversary, is the international dialling code for Malaysia and believe it or not, the highest obtainable level on World of Warcraft (apparently). As well as being day 60, it was Valentine’s day and also the day everything changed and Jenny took back control of this disease.
As mentioned in yesterday’s blog we made the decision to revert back to the IV base dose of morphine and stop the oral medication last night – what a difference that decision has made. Fast forward 24 hours and whilst it is early days, Jenny is starting to be herself again. She slept well last night with minimal pain and distress, meaning I got a half decent nights sleep as well. So how did she fare today…
Today started too early for me as it was around 4am when I finally managed to get off to sleep last night, with Jenny struggling through the night needing quite a bit of pain relief. We had seen Dr. Herzog and Dr Wright around 11.15pm last night and discussed our options for the next few days with regards to pain management and we discussed whether we needed to consider re-introducing the IV morphine pump. It was decided to give it another 24 hours before making a decision. This morning there was some confusion with Jenny’s oral medication which caused us some issues as she didn’t get it on time for a variety of reasons which I’m yet to get to the bottom of and frankly haven’t got the time to try – it was just annoying, especially considering the issues Jenny was having. Once washed and settled, Jenny spent most of the day asleep, which is always a good sign for the next few days – the body tends to sleep when it needs to.
Dr Herzog & Dr Rosalis came to see Jenny late morning and spoke with me as she was asleep at the time. It was clear to both of them that Jenny was struggling with the current pain management regime. I’ve always had concerns about returning to the syringe driver as it has implications back home. However, Dr. Rosalis suggested that we may consider opting for a small pump back in the UK which can be changed every 3-4 days, meaning Jenny could be at home rather than require daily nursing care in Marie Curie. It is important to both of us that we return back to our home when we land back in the UK, and all the organising we will do will centre around this.
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.
We have had Jenny’s mum and her cousins Helen & Justine staying with us for the last 2 days so there has been limited opportunity to post a blog entry, but the upside is that there is quite a lot to catch up on. It is now Saturday 11th February, or day 57, or the 1st day of week 9 depending on how you want to look at it, and we still don’t seem to be any closer to returning home. Is that true? Well, we must be closer to returning home and I’m sure that is the case but without a definitive date to aim for and arrange flights, then I suppose things are still up in the air.
Since our trip to Gießen hospital on Tuesday Jenny hasn’t been too good with fatigue and pain being her main issues. She continues to display good vital signs (especially her blood pressure) so no real alarm bells are ringing. We are quite used to the ups and downs of Jenny’s health over the last few months and there are usually indications as to the reason, and in my opinion this little spell of “down days” is no different. Earlier this week we switched from IV meds to oral meds, which was always going to be a little difficult based on previous experiences. This coupled with a bit of constipation and subsequent loss of appetite has led to some quite average days in comparison to the last week or so. I’m confident that this will pass as Jenny has improved slightly each day over the last 3 days. In light of this recent spell, Dr. Herzog felt it appropriate to cancel Friday’s appointment at Gießen for the portacath. This has been rearranged for Monday and we’ll take a view on it over the weekend. Pragmatically, it is definitely the correct way forward in terms of administering medication for Jenny but we keep stumbling at the final hurdle with this procedure and Monday will be our 4th appointment!
Jenny has not felt her best today with some nausea overnight and general sicky feeling for most of the day. However, her blood results are encouraging and don’t indicate any major problems (not to be confused with the blood results we will get tomorrow about the port procedure scheduled for Friday). She has rested all day in bed, with only a foot massage in terms of treatment, and will hopefully bounce back tomorrow. All her vital signs are fine and there are no reason for any concern, it just seems she is having a difficult day after the stresses of yesterday and the trip to Gießen hospital.
We woke late and missed breakfast, so lunch was the first meal of the day for me – vegetable studel which was surprisingly tasty. Jenny hasn’t eaten much today so she has been receiving glucose infusions to boost her energy. I managed a snooze this afternoon before dinner – fish which was again very tasty. Today Mary had her appointment for the results of yesterday’s MRI scan and the results are good with a full recovery expected and I think they have been told they can start to make plans to finally return to Australia.