OCAM - End of Treatment in Sight (October 2015)

21 March 2016

Whilst it was lovely to be able to spend the school summer break with the boys, it was exhausting. As typical boys they need to keep active otherwise their energy is deployed in sibling combat.  It was a fine line finding something to keep them out of mischief whilst trying to avoid wearing myself out in the process; alongside getting all the day to day chores done, keeping on top of the inevitable chaos that two young boys create in the house and trying to squeeze in some exercise to maintain my fitness level. Suffice to say after 7 weeks of school holidays we welcomed the back to school routine with open arms. On reflection, the loss of control triggered by my sudden diagnosis was kept in check by the structure and routine I’d developed for myself around the school routine. Over the school holidays it felt like the activities that had become my routine were on hold and I had to consciously focus on not letting anxieties take hold.   

Initially when the boys started the new school year I felt slightly adrift, finding myself with time to fill and an overriding need to find a sense of purpose. As ever I’m still notoriously bad at just doing nothing and set high expectations for how I’ll fill the week. With the end of my treatment in sight (three more doses of Avastin to go as I write), I feel I have ‘permission’ to think beyond December 2015 to the post-treatment phase. I’ve had a series of discussions with my employer about a potential return when I am able. Work continues to be very understanding and will be supportive whatever I decide is right for me. I’ve concluded that I would like to return to some form of work to provide mental stimulation and financial reward, but equally it is important for me to balance that with doing all I can to help keep the cancer managed and to spend quality time with family and friends.  

I’ve taken on a voluntary admin role for one of the boys’ football team. It feels good to exercise my brain again although its highlighted challenges in short term memory recollection – perhaps age-related, perhaps because I’m out of practice at multi-tasking outside the context of home life or perhaps a symptom of the widely documented ‘chemo brain’ (chemotherapy-related cognitive impairment). I’m also helping out at school once a week in the creative room – the regularity helps provide some structure to the week at the same time as being rewarding without having any associated pressure.

I’m convinced my abdominal hernia which developed after my surgery is getting bigger. I’ve shared my concerns with my oncologist who assured me it’s possible that it is getting bigger. He examines it each time I go for my check-up but to date he isn’t concerned about it being anything more than a hernia. We’ve talked again about the prospect of having it repaired; not a procedure that would be done whilst I remain on my treatment due to it slowing the pace at which wounds heal. I’d like to look into getting it repaired early 2016, in part because it doesn’t look nor make me feel great but also because I constantly worry it’s hiding something sinister beneath. 

The hair’s still short; my youngest cannot get his head around why I feel the need to visit the hairdressers to have it cut. I’ve kind of got used to wearing it short. It’s so much easier to manage and generally feels neater, however now it has some length on it it’s increasingly feeling messy and I feel I should know what style I’m aiming for – who knows!

In awe of friends with older brothers, my youngest asked whether they can put my womb back in so he can have an older brother. Once I’d explained that womb or no womb I couldn’t produce an older sibling for him it did make me realise that he’s taken on board what the surgery aspect was about.  

I’ve still got the portacath fitted into which I have my drug administered and my bloods taken.  I’ve got used to it being there now, now it’s established it’s far less sensitive when it’s being accessed by the oncology nurse and feels less at risk of being dislodged through exercise, although I still wouldn’t risk doing front crawl in the pool. 

In a recent appointment with my oncologist I asked that we revisit the topic of recurrence which I figure there remains a high probability of happening. We went back over the discussion we’d had back when I was in the midst of my chemotherapy. Once again we didn’t talk specific percentages but my oncologist assured me that for a proportion of ovarian cancer patients who have a similar grade of cancer and treatment regime, the cancer doesn’t bother them again and it remains managed – I sense this is a small proportion, but enough of a hope for me to cling onto. Subsequently Rob and I had a brief conversation around survival rates, comparing what we’d separately gleaned from the internet (on my part inadvertently). I’ve no desire to research it at length to ensure any figures are from a reliable source but we figure the five year survival rate is circa 20% which isn’t too encouraging (even when taking into account all the cautionary notes about reading too much into statistics; that they’re based on many years’ worth of data and I don’t fit the typical age profile of an ovarian cancer patient).  If nothing else indicative statistics like that are a stark reminder of the risks I now face and a useful backdrop against which to make decisions.

Family and friends continue to ask how I’m doing, I’m guilty of just updating people on the physical symptoms stemming from my treatment; it’s not easy to articulate the emotional side. I find myself paranoid on occasion that people are holding back their life challenges/health issues figuring I’ve got enough of my own to worry about. Whether there is truth in that or not, I hope people don’t feel they can’t tell me things.

On a positive note I got the results back from my latest blood tests. My CA125 tumour marker indicator remains stable and well within the normal range which whilst not conclusive, is encouraging.

opefully in the background as I get on with my life and see my loving boys grow up.

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