“Life is a Rollercoaster” might have been a more obvious accompaniment to this post, however I’m not in favour of the directly obvious song choice.
Suffice to say it’s been a really up and down few weeks. But I am still here, mostly with a smile on my face. I still put one foot in front of the other and turn my face to the sun. It has been difficult physically, from a pain and symptoms point of view but also emotionally and not least from a finding my way through the Pembrokeshire palliative care system perspective.
I had got used to finding my way through the Hertfordshire cancer centres. I didn’t have to think about who I called or what department was open when or who I could ask stupid questions to or who when everything else failed, I knew would find a way to help me. To take nothing from my shift to Wales and the brilliant service I have been provided since I landed on their care system, it is taking me a while to figure out my way through it, which is hardly surprising.
I have been asked a number of times whether I prefer the English or the Welsh system. Presumably this means specifically the systems I have become familiar with. Both are brilliant. I am more familiar with Hertfordshire simply because I spent 3 and a half years being treated there rather than Pembrokeshire which I am still finding my way around, and they are still getting to know me. Had I been given a choice I would never have felt unwell in June, had to be admitted and then never stood a chance of making it home. That lack of choice is not conducive to feeling brilliant. I have the hospital, the doctors, the palliative team, the hospice (in fact two), specialist nurses, district nurses and the list goes on. This is not something to complain about, and trust me I am not, but it’s not always easy to know which is the correct port of call. There are pros and cons to both Herts and Pembs and in the end its not as simple as which I prefer, no such luxury of choice. The point is they have had to provide very different care at different times as the needs of my illness and situation has changed and deteriorated. I am impressed by the care I have seen, apart from the occasional breakdown, and am truly grateful.
I have also been asked whether I would prefer to still be living at home in Hertfordshire. The answer is of course that I wish nothing had changed and that I was still able to live a healthy “normal” active life of a forty something. But I can’t, and wishing for what I can’t have is something that I try desperately hard not to do. I’ve always believed that giving yourself a satisfaction v. desire delta is the fastest possible route to misery. And so I simply don’t do it. I am happy for what I have. In the past, if I’m not happy with what I have, then I change it, but now, I accept what I have to and move on. Whilst I would rather be on Life Plan A, I am not, so I am very grateful to be housed in a beautiful place with my family. My sister and parents look after me unbelievably well. My small neighbourhood community make me feel incredibly at home.
From a treatment perspective, there has been quite a lot going on. Following the last drain, I had a couple of weeks respite where the pressure and swelling was considerably less. After that the fluid retained again. My breathlessness worsened considerably and my pain deteriorated. One speedy and uncomfortable visit to the GPs one afternoon I was given an given a higher dose of painkillers. And my lungs became a cause for concern. It turned out that my left lung had partially collapsed and wasn’t serving the rest of me very well. There is not much to be done about this. There are ascites/fluid sacks sitting around my lungs and abdomen which makes it near on impossible to figure out what to do. But the lung is not worth it’s own drain intervention and anyhow, the abdomen drain will reduce pressure on the lungs. I then started pushing for another abdominal drain.
Sure enough I was invited in to the day unit the following week for another drain. First came a blood test to ensure platelets were high enough, which they were. So the drain was able to go ahead. The test showed that the hemogloblin was too low, and so I asked for a blood transfusion as well. In fact I had to beg for it because this was not considered necessary but I realised that the symptoms of the previous week were all related. So in the same day I had a drain of 8.5 litres, a unit of blood and was home by tea time. It was an incredibly efficient system and I was looked after unbelievably well. They were so kind and I was looked after on the unit magnificently. I cannot speak higher of the day unit.
On the way to the hospital early that morning I really struggled to get in to the car. It was painful, traumatic, and difficult. I was breathless and we all found it something of a challenge. In fact when when we got home my Dad stated that we weren’t doing that again. I thought he meant that he needed some time to get over it. But in fact he is true to his word and the next day started looking for options that would make my life easier. We discovered Wheelchair Access Vehicles that you can can drive a wheel chair in to the back of and sit comfortably in the back whilst you go for a journey. After a couple of phone calls we found a dealer in Weston Super Mare that had a vehicle in stock. Sure enough a week or so later, my sister and he headed off to collect the car – this is a 7 hour round journey. They returned with a vehicle I can actually walk in and then sit in in my wheel chair and then be wheeled out of. I’ve written before about my incredible family. This is utter proof, were it needed, that they are incredibly kind and generous people who right now are putting me before themselves. I could not be more grateful.
The new car has allowed me to really change how I do things. I have been out and about on little trips and been to the beach far more that I might have previously. And we all know how much I love the beach.
A couple of weeks later I ordered a mobility scooter which may be the best thing I ever purchased. I bought one that is entirely fun and I absolutely bloody love it. Again it means I can get out and about much easier and move around. I don’t think I had realised how hard this had become. I can go up and down the street, even as far as the quay and the seaside and around the garden. It’s super zoomy and brings me a whole heap of joy.
I have had various visitors, including another long trip from my best girls. My Uncle and Aunt have been to visit as well as local pals. My sister’s girlfriend has been to stay for a distanced visit and her beautiful dog made friends with Thomas of Goswell. It was so great to see them all. I’m really worried the covid distanced visits will have to come to a halt some time soon.
In the last few minutes I have opened another parcel that left me in floods of tears. I can not get over people’s kindness and generosity. It floors me when what are sometimes complete strangers show their support.
Slowly but surely the ascites are worsening, nausea/vomiting and pain are increasing. I have long stopped caring too much about how much I look, but I do look a bit like I’m gestating a teenage elephant. As well as increasing medication I am booked in to have a permanent drain fitted to my abdomen next week.
It has taken me an inordinate amount of time to write this blog. I think my concentration is deteriorating as well as my need to sleep increasing. I hope you can bear with me if I start not to make too much sense from this point forward.
Is it time to start talking about Autumn and are the winds of change starting to blow? If it’s OK I’m going to hang on to summer for a tiny bit longer.
Sending love. Feel your boobs and bits.
Big love, AG xx
JEWEL / GRATEFUL
This is a great song and I recommend you have a listen to the artist if you can x
When everything’s wrong
When I can’t find my song
When darkness is all I see
There is a remedyIt’s all the little things that make the world go ’round
It’s all the little things that almost powerful
There’s no politician, no sky too dark
No one, no one can take the love from my heartThe sun gonna shine
And in this heart of mine
The sun gonna shine
And in this heart of mine
The sun gonna shine, ooh, ooh, it’s true
‘Cause I can always be gratefulWhen the loudest sound
Is your own life crashing down
And when your friends, when your friends, they don’t come around
There’s one true thing I’ve foundIt’s all the little things, the bells that ring
The green, green grass and the birds that sing
I’m gonna choose the bright side to see
And no one, no one, no one can…