Passing Cloud

Cornish Vacation

As the week draws to an end I can’t help but feel worried by my lack of activity over the last 5 days… I’ve been in a lot of discomfort and extremely tired, and I’m wondering if it’s a backlash from the hectic nature of the previous weeks. I’ve tried really hard to push through the pain barriers this week, it hasn’t been easy, but I have been able to do a couple of pleasurable things - gardening, a trip to the cinema and a hospice appointment. Not nearly as much as I usually do but enough to keep my busy mind contented. Unfortunately living an active lifestyle is my main method of keeping my mind busy - I love it when I’m so busy that there’s no time to let negative thoughts creep in. 

Tomorrow, we’re setting off on our Webber Cornish vacation 2012. I’m looking forward to the break away near the sea… a trip to my most favourite beaches is just what the doctor ordered :) Blog updates will be minimal. 

I’m mostly hoping for my health to pick up so that I can enjoy the time away in comfort. So for now I’ll say adios, but I’ll be back, soon!

Pulse? yep, still got one. Just awoken from a deep sleep with a 2am fire alarm…that gets the heart a-pumpin’ !!!

Where to go from here…

It’s been a tough few days. I haven’t been feeling good at all. Suffering with a lot of pain and discomfort. Spent this morning in bed until midday being sick…
Luckily I already had a hospice appointment scheduled for today. Whilst I was there, my complimentary therapist recommended speaking to one of the hospice doctors. He did a thorough assessment of my symptoms and we discussed some possible tweaks to my pain management. The main conclusion we came to is that I need to start taking things easy.

I’m always so busy and active, I never really stop and assess the stress that puts my body under. It’s a bit of a no-win situation - I like to keep busy to take my mind away from the obvious…and if I stop to rest, I think too much. To put it bluntly, I’m exhausted, both mentally and physically. Most evenings I reach a point of total discomfort - my liver feels as if it’s on fire, trying to burst out of my rib cage and I hobble about just trying to stand upright.

Most people see me out and about and assume that if I’m looking well, I must be ‘doing quite well’… unfortunately what appears on the surface is not always the case. Plus the fact I’m a really good actress! Last night I had a bit of a break-down and allowed all the fears and anxieties to flow. It felt like a long awaited release. 

Despite the sickness and dizziness this morning, I’ve spent the rest of the day trying to pull myself back together and figure out a way to go on from here. 

sadness in the sunshine…

I told myself so…

The consultation with my oncologist went as expected yesterday. I was really anxious and frightened about going back to the hospital and ward initially. This is where I’ve had all of my chemotherapy treatment and bowel surgery - and of course heard some hideous news. But I actually managed pretty well. All the incredible nursing staff and my oncologist made it much easier for me.

Before my appointment, I was mulling things over and it occurred to me that if there was an alternative chemotherapy, why was I not offered this before being passed on to clinical trials? After all, clinical trials are meant to be the last resort…so why revert back to chemo when it hasn’t worked in the past!? 

I was right - and my oncologist apologised on behalf of the registrar at the Marsden who had referred me back to her for a consultation regarding this type of chemotherapy, that is only administered in combination with a drug I’ve already received in the past. For those who don’t understand the laws of cancer…the cells become wise and programme themselves to (eventually) resist chemotherapy. This is why chemotherapy is not a cure… So, the cells on my liver became wise to the initial treatment drugs that I received in 2010, and by the time they made their way up to my lungs through the blood stream, they’re already ‘programmed’ to resist these drugs. The cells keep diving, and the tumours keep growing. SO, this chemo was never an option in the first place, and the doc at the Marsden should have identified that from viewing my history in the first place. So, ultimately, this news came as no surprise…and was in fact, a complete relief! Had it been an option and had the success rate of prolonging my life been high, I would have had a decision to make! or more like - some chemotherapy to crack on with! 

It’s an odd sort of territory, being a patient who’s not receiving treatment. It takes a lot to let go and become acceptant of the knowledge that I will die from this disease. But I will always take a realist approach, with an added dose of hope of course. I’ve seen people in denial… but like Ive said, there’s no right or wrong way of coping. 

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I hit the ‘post’ button for this blog last night and proceeded to cry a sort of cry that I haven’t done for some time. The sort that comes from deep within your soul…the sort that hurts. It seems absurd that their should be no other medical attempts at getting rid of this thing.  Biology is just too clever at this level. It just seems ridiculous. 

Take Stock

Many people comment on my zest for life and find it hard to comprehend where I get my enthusiasm from when I’m realistically wading deep in the great cancer bog of doom. 

I’ve said it before, but most reflect on their lives and wonder what they’ll be like when they’re 60, 70, 80, 90… but who’s to say you’ll live that long? We never know how long we have. Life can be taken from you in an instant, when you’re least expecting it. The difference being that I know what’s happening to me, I’ve been forewarned.

How do I get up every morning and get on with my day like I’m so frequently asked? …how do you get up in the morning and get on with your day? yes, I have the prospect of death looming over me, but what am I meant to do? sit in the corner of a room and cry about it all day? we could all do that!

I think the hardest part to cope with is not being able to foresee a future like others do…there are a lot of positive moves I would make in my future if I were to be given a second chance - one of the greatest gifts would be to become a mother. I would love to have children of my own…and when I recognise that this will never be a possibility for me, I cloud over with sadness. When the doctors have asked me to ‘get out there and live my life’ when treatments haven’t worked - I’ve wondered what they expect? Like I’ve said before, I could travel the world a million times over and it wouldn’t be the ‘future’ I want.

Last night I sat outside in the heat of the evening sun and watched life unfold in front of me within the house. Charlie was playing the piano, Mum and Dad were busy clearing things away and Richard had just finished eating his dinner. I looked around me, I smelt the air and realised…this moment is perfect. We’re just humans, living out our existence’s, and in that moment I decided to treasure that memory, because I felt well… 

There was a moment when I was in intensive care, a day after awaking from life support - I was in such a bad way. I lay on the bed looking into the eyes of my Dad pleading with him to switch me off because I just couldn’t take any more. Mum and Dad told me not to be silly and tried to convince me I had the strength to get through it. They asked me what I wanted them to do for me. I said the only thing I wanted was to be at home, sat around the table with all of my family, eating Mum’s home cooked pie! …and that simple thought was what got me through such a traumatic ordeal…it seems silly but it did! (I cried as I wrote that because I remember it so vividly).

I guess what I’m trying to say is that sometimes we should all take-stock of what we have right before us, and realise, it doesn’t get much better than that. It’s the simple things in life that are so precious. Money is a concept, things are just things… the next time you and your family get together for a Sunday roast, look around the table at each other and treasure that moment, because it’s special.

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I am so so frightened, I can’t possibly attempt to put into words how frightened I am…but I’m living the only way I know how.

Just Living

It’s been almost two months since I last went into the Marsden for clinical trial treatment… and man alive have I done some stuff in that time!!! …I’ve been dwelling on my upcoming appointment this Thursday with my oncologist. I don’t believe we’ve seen each other since November last year. Like I said last week, the aim of the consultation is to discuss an ultimate last resort chemo in conjunction with another chemotherapy I’ve had in the past. The success rate (of slowing the disease, not curing of course) is extremely low, and I’ve already decided that I won’t be putting myself forward for the treatment. As I’ve had first hand experience at how utterly awful chemotherapy is (x3), I know in my heart that I can’t put myself through it again, when the results are more than likely going to be negative…and with the majority of my time spent feeling rough, I won’t be able to do much else. SO, right now, I’m happy with living. It’s the best remedy. 

Tom shared this with me yesterday and I wanted to post it here on my blog, it made a lot of sense, particularly after such an enjoyable weekend. 

Science is not only compatible with spirituality; it is a profound source of spirituality.

When we recognise our place in an immensity of light-years and in the passage of ages, when we grasp the intricacy, beauty, and subtlety of life, then that soaring feeling, that sense of elation and humility combined, is surely spiritual. So are our emotions in the presence of great art or music or literature or acts of exemplary selfless courage such as those of Mohandads Ghandhi or Marin Luther King. Jr. The notion that science and spirituality are somehow mutually exclusive does a disservice to both.

                                                                                         - Carl Sagan

Happiness

This morning I woke up in a good frame of mind. I went for my shower and as I stood staring at my scars and bag etc - I realised that all of that doesn’t matter…because I’m happy.
I mean, apart from the obvious, I’m contented. Then I got to thinking about whether it was weird to feel this way? …and eventually, I decided, I think too much.

I’ve had a long day at the dentist and at the hospice. My nurse specialist and I went over my new pain relief regime and came to the conclusion that overall, it’s been having a positive effect and I’ve been managing well. I then proceeded to get a bit emotional and shared a few tears… The happiness of the morning soon turned into despair and I was once again riding that roller coaster!

There are no rights or wrongs within this situation. The mind and body does what it wants, when it wants. This is an exhausting existence to juggle.
Alas, I fear I have no other choice than to persevere… and just keep doing what I’m doing :)