Meow Meow

I’ve calmed down, composed myself and had time to rethink my comments over how other people react to cancer. I know it’s difficult knowing what to say when confronted with other peoples illnesses. Half the time we don’t really want to know…”How are you?”, drops of the tongue far too easily sometimes. I’ve seen and heard a lot of it over the last few years, it seems that it’s far easier when someone is cured, and lets face it, more and more people are being cured of cancer. It’s not uncommon for diagnosis, treatment and cure all to occur within the same year nowadays. Better diagnosis, better treatment, improved surgery techniques and more targeted chemotherapy. It’s almost expected that they’ll recover and be back at work within months. It’s easier to say how pleased we are when this is the situation. We can openly say how strong we think they were, with their ‘battle’. How they fought, stayed strong, endured and beat the disease. It’s almost that we’re a failure if we don’t get cured, didn’t fight hard enough. When faced with something that is incurable and long lasting we don’t seem to know what to say. I include myself in that, I’ve been in the same situation and been lost for words. Sometimes I still feel like a leper (see, I don’t even feel like I’m a bona fide cancer patient) but I suppose it’s all part and parcel of having advanced cancer. In truth it’s often me that’s lost for words, what do you say when confronted with ‘oh my cat had cancer’ when someone learns of my diagnosis. Meow.

I was almost prepared for my own battle when attending my oncology appointment this week. I wasn’t prepared to continue with chemotherapy that was making me so ill. In the end the decision was taken out of my hands. I don’t know why I doubted my medical team, I’ve known them all long enough. I couldn’t have wished for a more sympathetic ear. Of course they understood what I was going through. Of course they understood how ill I was feeling, how desperate I was, how scared I was. They had no intention of letting me continue with treatment when I was suffering such a severe reaction to the chemotherapy. In a way I was perhaps a bit naïve in under estimating how it could affect me. I’d read all the paperwork, signed the consent forms, listened to all the warnings of the possible side effects, even if some of them were ‘rare’. Why should I think this one would be any different to other courses of chemotherapy I’d undergone, (even though they were different drugs) I’d sailed through them. A bit of nausea, mild diarrhoea, bit of a skin reaction, fatigue, but it was all manageable. Even having read through all the notes again, nothing could have prepared me for how ill it made me feel, and yes, I was just unlucky to have had such a severe reaction. It happens, my body was just hyper sensitive to this concoction. I left with the usual carrier bag of drugs too counteract the side effects, antibiotics, creams and ointments. My face has erupted with acne, another side effect. It’s like being a teenager again, but I’ve been warned that the risk of infection is extremely high, so I’m paranoid about hygiene, even more so than normal. I’m still awaiting results from tests looking for any further infections. They’re unlikely to identify anything, but there is a high probability that I might have picked something up when my bodies defences have been so low.

So I’ve got a month without any treatment at all (apart from the antibiotics and treatment for side effects), and then we’ll decide where we go from there. There are not many options left, but I’m far happier with the situation as it is. Quality of life is far more important than quantity. With four days left until we leave for Glastonbury I’m pleased to say I’ve started to feel better. There are still a few residual problems but nothing I can’t deal with. Lack of energy is my biggest problem, I can only manage a few minutes of doing anything strenuous without having to sit down for an hour to recover. The garden needs urgent attention but that is going to have to wait as there are more important events looming. There’s still colour, and you can’t see the weeds unless you look closely. I just don’t have the energy to do it at the moment. I’m so glad I’ve booked the electric scooter for next week. I can’t see me being able to get around without it.   I have to admit that there have been many occasions over the last few weeks when I doubted if I would make Glastonbury. I’m sure there were many who knew that was what I was thinking, but I wasn’t going to admit it. I’m relived to say that all doubts have now gone and in a few days time I’ll be back in the vale of Avalon and making the most of ever second that I’m there. Last year I took a bottle of champagne to celebrate the news that scans had revealed there was no evidence of cancer remaining in my body. As we now know that didn’t last very long and I’ve since undergone a second session of surgery on my liver, only for the cancer to return for a third time, this time inoperable. They’ll be no champagne this year, probably not even any alcohol, but I will sure to be celebrating being back there. Foremost in my thoughts will be Hazel (@stinkywitch) who sadly will not be joining us this year, but I know her spirit will be there with me. How quickly things can change, and it should be a lesson to us all that we should make the most of every second we have, every moment with those we love the most and savour the good fortune we have. I wish a few more friends were there with me, I still feel guilty at being able to get tickets when they didn’t, I’ll miss you, it’s been a long time since I did Glasto without you, but I’ll be well looked after. I can honestly say I don’t remember looking forward to going as much as I am for many many years, which is saying something considering it has always been the highlight of my year. It’s never been about headline acts for me, there is so much to do and see without going anywhere near the main stages. We’ll be camping in the disabled camp site which will be a totally new experience, it’s taken me years to accept that I might need a few helpful facilities.   So that’s about it, no more blogging until I get back. I’m almost organised, just a few clothes to throw into a bag, sort out music for the journey, oh and make sure I’ve got a big box of drugs and medication to take with me.

Once again, thank you to you all for the many messages I have received during the last few weeks of turmoil. We got through it in the end. I’ll be posting one more entry in the next few days which will be self explanatory, and I’ll be nominating my own candidates for the Liebster Award, so watch this space 🙂

Advertisements
This entry was posted in 5-FU, Be Clear On Cancer, Be Loud Be Clear, Beating Bowel Cancer, Bowel Cancer, Cancer, CAVA research study, Cava trial, cetuximab, Champagne, chemotherapy, Colitis, Colorectal Cancer, Fluorouracil, Folinic acid, gardening, Glastonbury, Glastonbury Festival, Health, irinotecan, Liver, Liver resection, Loperamide, Manchester, Metastatic Bowel Cancer, Oldham, Port-a-cath, Portal Vein thrombosis, Saddleworth, Springhead, Stage 4 cancer, Steroids, The Christie, Uncategorized and tagged , , , , , , , , , , . Bookmark the permalink.

3 Responses to Meow Meow

  1. SandyL says:

    Dear Chris, have the most wonderful time at Glastonbury. I truly hope things go well for you. I really look forward to reading your blogs, they sort of put into words just what I’m feeling. Every blessing to you and yours. Love SandyL xxx

  2. Nick Parry says:

    Hi

    Really enjoy your Blog….I love my music and we are both in similar situations with this bloody diesease! I wanted to go to Glastonbury this year but wasn’t well enough…it would have been my first time.
    I hope your treatment is going well and you will keep up the Blogging!
    Cheers
    Nick
    http://www.nickjparry.co.uk

    • Thanks Nick
      Sorry you weren’t well enough for this years Glastonbury, fingers crossed for next year, tickets on sale in just a few weeks, good luck.
      Sadly I think 2014 was my last, it was extremely hard work for me (and those with me). Blog to resume soon…watch this space
      Chris

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s