Brenda won't back down

Who’s Zoomin’ Who?  Am I up or am I down?  It’s been hard to tell lately, but as usual, I would lean towards ‘up’.  Perhaps it’s because I’ve just completed my second 3 miles of my Royal Marsden Cancer Charity 40 miles in January challenge.  Exercise always makes me feel good as does loud 80’s music (which is playing in the background as I type).

A year ago today I was not even a month out of hospital after my second MOAS (Mother Of All Surgeries), I was a piffling 52 kg and was desperately trying to put on weight while adjusting to life with an ileostomy.  Happily, I managed to adjust quite quickly and was back at work and and out and about in February.  I had a fabulous string of International Women’s Day events touting the 30% Club #theMissingMillions report just before lockdown in mid-March.

Today I am weighing in at a slightly too healthy 60.5 kg and am determined to take some off (and have ordered a Peloton to help with that).  Having thought that I would never get used to my ileostomy, it is my ‘new normal’.  And, like everyone else, I have adjusted to work on GoogleMeets, Zoom, Teams, etc.  It’s been a very busy year for the Inclusion and Diversity business and I’ve worked with many new clients and some teammates that I have never actually met in person.  My work has been a real tonic – I love what I do, I really like my clients and my team and I feel a huge sense of purpose in what I do, which has really helped me to push my cancer concerns to the back of my mind.

Health-wise, it’s hard to work out what’s actually happening.  That’s the nature of this very rare disease – there is no clear path or prognosis and progression is not linear.  My latest scan showed progression and I am now more aware of my symptoms than ever before.  I have at least two very large cysts in my abdomen, one of which is draining on a daily basis keeping me very close to the loo at all times; the other is slightly larger than a cricket ball and is directly under my stoma (I originally thought it was a hernia).  It’s not painful but it does stick out a lot and means that tight waistbands can be a bit uncomfortable (thank goodness for dressing from the waist up for Zoom calls).  What will happen to these ‘cysts’ – will they continue to grow?  Will they have to come out at some point?  I don’t know.  At this stage my surgeon is not keen to operate unless I have organ failure and given the COVID situation, I don’t know that I could get in even if he did decide to do something.  My oncologist is trying to manage the fluid production in my abdomen with a drug that is used on other cancers.  It’s not a cure but he hopes that it will improve my quality of life.  I had the first injection just before Christmas and have two more scheduled in the coming weeks.  So far it hasn’t helped, but I hope that the second injection in a couple weeks may make a difference.  I don’t know if I have had any side effects or not – I’ve been napping a lot more over the past week and have really felt the cold, but that may just be a combination of taking a holiday after working full-out and cold damp weather.  I’m sure everyone has been feeling a bit like that recently.

Now, as we move into January, I am determined to make a number of resolutions for 2021 – to keep living life to the fullest (whatever that means in Covid), to keep up with family and friends, even if it’s just on Zoom or the phone for now, to stay as fit and healthy as possible, to read more for pleasure (and create boundaries between work and home), to find ways to dance with girlfriends over Zoom (thanks for the playlist, Lucinda!), and to seriously consider ‘wild swimming’! 

This past week has been a tough one.  I had a CT scan and blood tests on Monday and then had to wait until Friday to have my follow-up consultation with my oncologist.  I have also been waiting for the results of a genomic sequencing that was being done on my original tumour to see if we could find any mutation to target.  Knowing that I am experiencing symptoms of the disease now and that it is clearly progressing, I have been more anxious this week than normal.  I thought I was keeping it all together until I broke down into tears in the office this week over a silly misunderstanding with a colleague.  I was mortified and had to explain that it was due to all that was on my mind and not the work situation – not one of my Wonder Woman days!

Time rolled on and I had my follow-up appointment with my oncologist yesterday and Trend and I left with a small glimmer of hope.  My oncologist’s take on my latest scan was there is clear progression of the disease in various places, particularly around my kidneys but that the rest of the diseased areas are largely stable.  My tumour markers from my blood tests were also stable.  The genomic sequence that they did on my tumour was largely inconclusive so there are no gene mutations that they can target with chemo or immunotherapy at the moment.  However, the one gene mutation that they could identify is the KRAS gene and it’s one that’s receiving a lot of attention at the moment as I believe it is common to many cancers.  My oncologist thinks that there could be treatments coming out in the next 6 to 18 months that could be relevant for me.

We also discussed the fluid that is being produced in my abdomen (which is how my disease manifests itself) – without going into too much detail, it’s currently coming out of me at the rate of 100ml per day.  I have to think that it’s a good thing that it’s coming out rather than building up as it did last year prior to my last op when my tummy reached full space-hopper proportions.  However, it does present some real discomfort issues for me in terms of feeling like I need to go to the loo all the time (and having to always be close to one) as well as having to get up several times through the night.  He knows of an injection used in other cancers to inhibit secretions and he has seen one case study of it being used in a patient with PMP with some success.  He is going to try to get approval to try it on me with monthly injections.

We didn’t discuss my new hernia under my stoma – I need to deal with that separately although I know that my surgeon is not keen to open me up again.  Luckily, it’s not causing any major problems right now.  I can exercise and jog with a hernia band on to give me support. 

So, although the disease is clearly progressing, I didn’t get the sense that I am in any immediate danger, and there is a small grain of hope in the development of the KRAS mutation treatments in the coming years.  We agreed that his job is to work with my surgeon to keep me alive long enough for the treatment to be available for me.

So I have a plan.  And for now, that’s enough.

The lyrics from Green Day “Summer has come and passed, the innocent can never last…” felt appropriate for this blog.  It’s a hard one to write as I’m not really sure what to write or why I’m writing it, other than perhaps helping to get the narrative straight in my head. 

I’ve had a lovely summer in spite of Covid.  It’s been great to have both children around so much and to have nice weather to enjoy some croquet and bbq’s together.  I was lucky to be able to have a short visit with my mum and to catch up with some of my friends and family in Nova Scotia, and my job is going well, my boards are busy and there has been lots of cricket on the telly.  And, I’ve been feeling well and managed to get out on my bike and do some lovely off-road running as well.

Prior to my surgery in November last year, I was having CT scans and blood tests every three months to monitor the progression of my disease, so we were very much on top of it.  Post-op, however, we decided to wait six months and then with Covid, we delayed further until mid-September – particularly as I was feeling fit and well.  As a result, it felt like a real slap in the face when my recent scan showed that the disease is progressing.  It really pulled me out of my world of ‘happy denial’ and I had a hard time reconciling the news with how well I have been feeling.  As for treatment, I’m not a good candidate for more surgery and chemotherapy isn’t known to have much effect on my cancer.  I’m not, however, one to just sit back and do nothing, so I am speaking to other doctors and looking into alternative therapies.

Coming back to why I’m writing about this – it’s not because I’m stepping back from things and sitting at home resting.  Of course I’m not.  I still feel really well despite what the scans show.  I love my work and my boards and 30% Club activities and all of these things together with my family and friends are what give me my strong sense of purpose and fuel my resilience.  However, as strong and as Wonder Wonder-like as I like to think I am, I do find it all a bit overwhelming at times and I do have the occasional blip.  When that happens I need to let a few tears fall, listen to some upbeat 80’s music and have a dance.  I would have said that I may ask for a random hug as well but sadly Covid won’t allow it.  It also means that I may not be as on top of all of my emails as I would like – please don’t worry or take it personally if I don’t respond right away.  I’m trying to get better at finding a bit of downtime to read or do some exercise or to just be.  I love my life and I intend to continue to enjoy every moment of it, to live life to the fullest, and to take the time to savour it.

As I sit in my lovely garden in Sevenoaks this morning listening to this classic tune, I am reminding myself of all of the things I have to be grateful for, starting with my family, my friends, Bonzo, and the sunshine caressing my cheek. It’s a strange and surreal time, particularly as we approach the summer without the usual anticipation of our long-planned holidays with family and friends.  Most are struggling to adjust to the uncertainty and ambiguity of Covid-19 life. We don’t know when or how we will go back to work. How our social life will be managed in the future. We don’t know when we can go to a concert or a sports match again, when we can travel freely, hug without fear, or even have a haircut? It’s tough and stressful to adjust to this way of living.  I know – I’ve been living like this for the past 3 ½ years.  One of my friends reminded me that I’m ‘ahead of the curve’ in that regard.  Living with an incurable disease isn’t the same as navigating life in Covid-19, but it has taught me to live in the moment, to take time to notice and appreciate things I had previously taken for granted, and to take life one day at a time.  Of course, those who know me, know that I love to plan, and, like everyone, I had lots of great plans that have been cancelled due to the pandemic – holidays with my family, a trip to Canada to receive an honorary doctorate, Glastonbury, a 25th-anniversary party, and the list goes on. However, this isn’t new to me – since my diagnosis in November 2016 and subsequent surgeries and chemotherapy, I’ve had to cancel lots of plans and re-arrange my life on an ongoing basis. I’ve realised that I’m actually quite adaptable and resilient. I’m still making plans, and I haven’t given up hope of getting to Nova Scotia to see my mum and our little house by the sea this year.  But, I accept that our new normal is still evolving, and I need to change with it.  In the meantime, I’m going to use this long weekend break from work to enjoy time with the family, have some Zoom calls with friends, bake with India (and continue to put on weight), have some socially-distance runs with Mads, listen to some vinyl and read in my hammock.

‘I felt so good, like anything was possible…’. – great lyric from Tom Petty’s song and it really described how I felt running through Sevenoaks in the sun with Bonzo this morning.  It was my second post-op run.  The first was yesterday in Knole with Mads and we ran through sun, rain and a hailstorm.  So, so good to get back to running.  It’s still short runs – today was 2.5 miles in just over 30 minutes – but it’s a start.

Tomorrow marks the beginning of my fifth week back at work and it’s going really well.  I still have a bit of pain as the scar tissue inside continues to heal and the top of my left thigh is still numb from the epidural, but otherwise, I feel really well.  I’m even eating a well-balanced diet now and I’m very close to my target weight (which sadly means I won’t need to eat ice cream every evening anymore).

This week will be busy as next Sunday is International Women’s Day with lots of great events this week and next.  Happily, my energy levels seem to be okay, but I’m trying to be sensible and not overdo it.

So, for now, things are good – I feel well, I’m adapting to the ‘new normal’ of having an ileostomy, and I’m happy to be getting back into the groove.

This is a quick update for those of you who saw my Twitter post last weekend – I was overwhelmed by the outpouring of supportive messages when I tweeted that some days were harder than others and that I realised that it was okay not to be strong 100% of the time.  I’m conscious that as a very ‘glass half full’ person, most of my posts are upbeat and positive, I’m usually smiling in my photos, and there is a lot of talk of ‘Wonder Woman’.  And, I have to say that the positive days do very much out weight the negative.  In fact, I did an online survey this week about my general state of well-being and happiness, and I scored quite highly.

However, in the age of artificially beautiful social media personas, I feel that it’s important to give a very balanced picture.  It’s not all smooth sailing and I’ve had some really bad days as well.  By the end of last weekend, I was absolutely worn down by my situation.  Without going into detail, life with an ileostomy is not straightforward and I really hadn’t anticipated how tough it would be – mentally as well as physically. A lot of tears have been shed in frustration.  And I hate crying.  However, I realise that it’s probably quite a good thing to do.  In fact, I’ve been advised to really howl when I feel bad.  It’s all part of the process of grieving and moving forward.

So, I remain positive overall.  I’m genuinely happy with my life.  I am grateful that I feel well, that my surgeon was able to operate and remove my diseased colon and that I can still function pretty normally.  I love my life – my family, my friends, my job, and my 30% Club work.  However, I am going to openly admit that I’m fed up with my new low-fibre ‘beige’ diet of white carb easy to digest food and with the added hassle of everything that goes with having the end of my small intestine sticking out of my tummy.  And my control-freak nature hates the fact that I have no idea how this disease will progress, so I can’t make a plan for dealing with it.  And that’s okay.  I am learning to just live for the moment, to ‘make hay while the sun shines’ and, if I shed a few tears in talking about it, please don’t worry – just don’t let me walk around with makeup running down my face.

Okay, so I wasn’t actually ‘rockin’ around the Christmas Tree, but I did have a very nice Christmas.  Along with my Mum who is visiting from Nova Scotia, our friends Bridget and David with their daughter, Elsie and toy poodle, Prince came down from London for Christmas as they do every year.  We played lots of games and laughed a lot, which was lovely.

I am taking it relatively easy with at least one nap a day and am starting some short walks.  I was delighted to wake up on Saturday morning and walk to the petrol station for my papers – it felt ‘normal.’

I’m still working on my weight.  I’ve been consuming as many highly calorific foods as I can and have managed to gain two pounds (up to 106 lbs now!) and I’ve been able to cut my pain meds back to only once a day before bed.  So, all in all, good progress – looking forward to more games on New Year’s Eve when Teddy’s girlfriend, Lottie (who is very competitive), joins us.  Bring them on!

Never has a song title been more apt. We are outta here!