Despite people’s expectations, diagnosing Cancer isn’t a two minute job. There is a whole host of stuff to consider and medical staff clearly want to get it 100% correct in order to plan and manage the patient’s treatment. I wrote a blog on 26 July “celebrating” 4 years since diagnosis – it’s worth a read, check it out at this link here: http://wp.me/p4AplF-c
Continuing with the ‘four years on’ theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis. I think many people might expect a quicker execution of treatment. However, I cannot remember becoming impatient, albeit mine was to be palliative/cyto reductive (tumour debulking) rather than curative. I did have a 3 day Octreotide Scan midway within this 6 week period and this gave me some confidence that I hadn’t been forgotten! Despite being told my cancer was incurable, I vividly remember not feeling ill enough to be a cancer ‘patient’ and I therefore continued to act and work normally. After getting over the initial shock, a little bit of me still thought it was all a big mistake!
Then, on 6 Sep 2010, I was introduced to the world of ‘Somatostatin Analogues’ – namely Octreotide. Although I was working normally, I was experiencing worsening flushing episodes, some of which were drawing attention at work with one person asking if I had blood pressure problems! The flushing was a result of my metastatic Neuroendocrine Cancer and associated Carcinoid Syndrome. Check out this blog: http://wp.me/p4AplF-2w My Oncologist was spot on though, as the flushing had to be brought under control before I could undergo the cyto reductive surgery – an acute syndromic effect known as ‘Carcinoid Crisis’ during major surgery could be fatal. I was fortunate enough to have home visits from a Nurse as part of my treatment and ‘Ann’ turned up with a box of daily dose Octreotide (25 micrograms) plus a ‘sharps box’. Ann came to see me the first 3 days to make sure I was able to self administer – however, I volunteered to stick it in myself on day 1 – in for a penny in for a pound! It did eventually reduce the flushing and was sufficient to counter the risk under anaesthesia.
The daily Octreotide was a bit of a pain to administer though. The dose was in an ampoule which had to be ‘snapped’ open and the (very expensive) drug then had to be aspirated using a wide bore needle from the ampoule into the syringe. Then the needle had to be swapped for a smaller bore which I would then self-inject against a rota of left stomach, right stomach, right thigh, left thigh, and so on. I only messed it up once which resulted in a cut finger and a wasted drug dose. I’m no longer squeamish about injections though 🙂 In Dec 2010 after major surgery, I was converted to a monthly long acting injection of Lanreotide (same job as Octreotide). This is a thicker and larger needle and is injected ‘deep subcutaneous’ into the buttock by a trained nurse – check out this blog post: http://wp.me/p4AplF-cV and here: http://wp.me/p4AplF-6c I’ll most likely be dependant on ‘Somatostatin Analogues’ for the rest of my life but I almost look forward to my 4 weekly ‘butt dart’ (a brilliant term used by my American friends). I suspect these injections are the reason so many people say to me “You look so well”.
I haven’t had a single flush since surgery/start of Lanreotide – lucky I’m not a card player 🙂
Please help spread awareness of Neuroendocrine Cancer by sharing this blog.
Ronny
Follow me on twitter here: https://twitter.com/RonnyAllan1
Want to receive my blogs by email? Click on the ‘Follow’ button.
