OCAM - Treatment Done … Now What?

Date: 22 March 2016

December 2015 – So, 22 cycles of Avastin done, the 3 weekly visits to the hospital come to an end, an emotional milestone. Having the last treatment felt flat. It felt as if it should call for some sense of occasion if it wasn’t for not knowing what lay ahead. A huge relief to have made it to the end of treatment; in the early part of treatment I had my doubts as to whether I’d even be here 15 months on but what now? What if the Avastin has been the thing that is responsible for keeping my cancer managed? What’s going to be thrown at it now? Well if my scan comes back clear then nothing, it’s deemed to be controlled and I’ve got to cross everything going in the hope it doesn’t come back. There’s no getting away from my hospital visits, I’m going to be seeing my oncologist every couple of months as part of the monitoring process and I’ll continue to have regular blood tests to keep an eye on my tumour marker levels. Given they’ve been stable for a good year now any changes must be a strong indicator that something is amiss.

In practice a scan at this point in time wouldn’t be deemed necessary as none of the indicators (CA125 test results, symptoms and physical examination) present a cause for concern but my oncologist decides it’s sensible to do one before referring me for an abdominal hernia repair.  Logically I shouldn’t be too anxious about the scan results but obviously the fear creeps in big time and the vicious cycle of “must be positive, what if I’m positive and ill prepared for the negative?” creeps back in.

Now able to focus beyond active treatment, I revisited the discussion with my oncologist about recurrence. We’ve talked explicitly about that % of women for whom it never bothers them again. As suspected it’s a lucky few (10 – 20%), confirming I face a 80-90% chance of recurrence at some point in my lifetime. I have to hope I’m one of those lucky few who don’t have to endure the battle again or at least hope I have a good few years ahead of me before I do. On a positive note, I’ve seemingly responded well to the treatment regime on the first occurrence so there’s nothing to say it wouldn’t be equally as effective on a second occasion. Furthermore there are other treatment regimes available that could be considered.  

I’m still undecided on what to do about my portacath. If all is OK with my scan then I’ll look to get it removed early in the New Year. A foreign body always comes with increased risks of infections/blood clots however small and if I were to keep it in then I’d need to visit the hospital every few weeks to get it flushed.  It was a fairly minor procedure to have it implanted therefore if I need it again I can have it put back in. Others have talked about the feeling of tempting fate if they elect to have it removed at the end of active treatment but I sense that feeling would always be back of mind regardless of when I choose to have it removed.  Hopefully my veins have had chance to restore themselves (or whatever they need to do) so regular blood tests shouldn’t be too much of an ordeal without the port in situ.

I’m really not digging the short hair. It’s recently been described as resembling a ‘mane’ and a ‘mad scientist hairstyle’ by my boys, admittedly around the time of their protracted bedtime performance when I’m feeling particularly frazzled. I’m under no illusion I’ll ever be sporting long blonde hair again but it feels such a mess and goes uber curly if there’s any moisture in the air. I’m still optimistically hoping its inclination to curl will reduce as it gets some length.  

I’ve still got the desire to return to some form of employment, predominantly for a sense of purpose and some income, if I can find a role that enables me to spend quality time with friends and family and gives me ample time to look after myself and get the sleep, diet and exercise I need to feel I’m retaining some control over the management of my cancer. What continues to be frustrating is the ability to identify exactly when I’ll be in a position to return, as the side effects incurred from treatment are unique to each individual and so is the rate at which they dissipate. I continually question whether the dizziness and thick head sensation will disappear. Increasingly I find myself making a conscious effort to retain a piece of information only to find I’ve forgotten it only moments later. The fatigue lingers. It’s not shown any sign of improvement for a good six months now. Here’s hoping end of treatment will change that. In the last couple of months I’ve noticed an unusual taste now and again, not as unpleasant as chemo metallic taste but a ‘chemical one’. It might be linked to the sore patches on my tongue that have developed as if I’ve burnt it. I’m told these are likely to be a side effect of my treatment where it’s irritated soft tissue membranes on my tongue.

Physical exercise has been a coping mechanism for me throughout adult life. When things felt like they were getting too much juggling work and family life, then finding time to exercise felt like I was regaining some control over life. Regular exercise continues to be a key coping mechanism in adapting to a life with cancer. I continue to focus on swimming, running and cycling, all activities which allow me to adapt my intensity levels to my limits on any given day. Participating in exercise has given me more strength to adopt a positive outlook than I would have done otherwise and it’s not gone unnoticed that regular exercise has proven benefits in helping to keep cancer managed.  

My chats with my Macmillan nurse continue to be invaluable, helping me make sense of my emotions and keeping the things in perspective.  I continue to review cancer-related books on behalf of the Macmillan Cancer Voices network, in part to help others determine whether the book is an appropriate read for their circumstances but in reading them I feel more assured that the feelings cancer evokes are normal and less alone facing it. I’m passionate about helping to raise awareness of ovarian cancer. 

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