Brenda won't back down

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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!

Goodbye central line. Brenda is off her TPN (Total Patient Nutrition) and eating three small meals a day. We’ve just walked downstairs together which is another tick in the box towards getting home.

Back on track. A good night’s sleep, a breakfast of champions (chocolate ice cream) and GREAT PAIN MEDS.

Brenda writes

‘Totally cr*p day today. No need to sugar coat it. I was not ready to give up the pain relief. I had many tears and have had some pain relief back. They are re-instating my feeding tube as I can’t consume enough calories on my own. They want me to eat chocolate bars and crisps and get at least 2000 calories a day – I can’t get near it. On a positive note, Trend helped me to have a shower. Not so strong today, feeling a bit sorry for myself. But that’s how it goes.’ x

Enough said. I will be popping into Starbucks on my way in tomorrow to buy an 800 calorie Signature Hot Chocolate with double whipped cream and marshmallows on top.