Brenda won't back down

It was hard to know what song to choose for this blogpost as my range of emotions in thinking about it has been very wide – from sadness, anger, frustration, resignation, relief to hope and optimism.  I settled on ‘Galvanize’ by the Chemical Brothers as that is where I finally landed – I’ve accepted my latest setback and am now galvanising myself for my next treatment.

I’ve gone from my disease being ‘slow-growing’ and my doctors advocating a ‘watch and wait’ approach with scans every three months and further surgery being ‘a long way down the road’ to a much more active disease.  This has manifested itself in my abdomen being very distended (like a beachball) due to a significant increase in the volume of gel (which is how my cancer progresses).  Although it sounds very superficial, my initial frustration was wardrobe-related.  None of my dresses fit anymore and I’ve had to buy new very baggy, maternity-like clothes to hide my bump.  Thank goodness big sac-like dresses seem to be in vogue at the moment!  I’m not in any pain, for which I am thankful, and everything internally is still working well, but this is not sustainable.  I do experience a fair bit of discomfort from my size – shortness of breath, soreness when I have been sitting upright for an extended period of time, and I’m not able to jog anymore (which frustrates me hugely).  If we leave it to continue, my beachball will become a spacehopper and the gel will crowd out my organs.  I am also suffering muscle wastage as the tumour is taking all of my nutrients which means that my arms and legs have gotten quite skinny and I’m a bit boney, and that’s not sustainable either.  So, back to Basingstoke to my brilliant surgeon and the wonderful team of nurses for another horrendous op (and just typing this is making me cry).  I can’t believe that I will go through that again, but at the same time, I’m glad that we are doing something.

This latest news is almost harder mentally than my original diagnosis as this time I know what to expect and this time I’m going in to control the disease, not to cure it.  If I let myself dwell on it for any amount of time I start to have flashbacks of waking up with the ventilator down my throat, all of the tubes, drains, catheters, etc. the hallucinations from the morphine, the long nights lying awake in hospital and the horrific back pain that took so long to get under control.  On the positive side, knowing what to expect will help me to prepare better this time and I know that I got through it before and will get through it again.

This time I may get away with a 6-hour op rather than 10 as there are less organs to remove.  They will still have to open me up from breastbone to pelvic bone, so a similar scar to last time.  They will take out the gel, remove my colon, perhaps some other bits, do HIPEC (heated chemo) and give me an illeostomy.   That will take some getting used to, but lots of people live active lives with stomas, and I’ll manage.  I’ve been speaking to people who have had stomas and reading up on it.  I’m very grateful to people for sharing their experiences as it makes it much less daunting.

In terms of ‘galvanising’ myself, my wonderful husband has bought me a cross-trainer which I’m using as often as I can, I’m going for dog walks with friends, I’m trying to carve out time for mindfulness and relaxation and focussing on my new job (which I love), the 30% Club campaign and my cricket board.  As was the case the last time, having such wonderful support from family and friends and having a strong sense of purpose really fuels my resilience tank and will help me to focus on recovery after the surgery.

I’m scheduled to have the surgery on the 25^th November so that I can be home in time for Christmas.   Hopefully a much shorter recovery this time!

And please do keep an eye on the blogsite for updates.  Trend will be taking over from the 25^th November – all of your supportive comments mean so much to both of us.  It really helps to know that we have such wonderful friends.

A week late but, what a weekend.  After my cancer diagnosis, a number of people asked me if I had a ‘bucket list’ and if so, what was on it.  I was embarrassed to admit that I didn’t (so my son Teddy bought me a ‘bucket list’ notebook to start thinking about it). After much reflection, the only thing that came to mind was Glastonbury.  Ever since I moved to the UK in the early 90’s I have wanted to go, but I’ve never managed to organise it.  That all changed this year thanks to Judith Wheelan for helping me source tickets and glamping accommodation and Madelaine Verchere for agreeing to be my Glasto buddy.  We were not in a tent, we were in a caravan with our own loo and shower. It didn’t rain, it was a beautiful sunny weekend.  And, we saw lots of amazing artists including Sheryl Crow and Kylie Minogue.  It was truly fantastic! #LiveLife

I’ve always liked John Lennon’s ‘Starting Over’ and it feels like the appropriate them tune for the past two weeks as I have just started a new career at age 51 (almost 52).  As of the 1^st of June I am a Partner at PwC in the People and Organisation consulting practice.   I will be consulting on all things people-related including Diversity & Inclusion, Culture, and Workforce of the Future.  While it’s a complete career change from banking, it’s very closely linked to my personal passion and my 30% Club work.  Very energising and exciting and well-aligned to my values and purpose.

For the first time in several years I returned to the Boxing Club on Friday morning and, gosh, it was hard.   I should explain that I’m on a short work break as I resigned from my job at ANZ and finished on the 12^th April.   At 51 I have decided that I have done my time as a Banker and it’s time for a new career that’s more aligned to my sense of purpose.  I have had this in mind for some time, and finally I took the plunge.  If all goes well, I will start my new role in early June (stay tuned…).

In the meantime, I’m enjoying my short break – doing lots of 30% Club work, some cricket work for the ECB, meeting up with friends and sorting things out at home.  I think Trend is looking forward to me going back to work next month!

For those of you who know Glen Campbell, you may remember this wonderful song – ‘Try a little kindness’ (and if not, it’s worth having a look on YouTube).  At the end of the week that included World Kindness Day on Tuesday, and after a lovely SLJ run in Knole Park this morning that started with a few warm and lovely hugs from old friends, I thought I should write a short blog to recognise the kindness of so many that I have experienced lately.

Although my chemo finished at the end of April, it has taken me months to get all of the poison out of my system and I probably haven’t felt back to a ‘new normal’ until October.  Many of you will know that I did my best to keep working full-time throughout the chemo with the exception of a few days when I was just too ill to work.  There were some people that assumed that because I wasn’t at home in bed, I was fine and I think they forgot that I was ill.  However, many others have been really sensitive and have shown me a great deal of kindness throughout, recognising that no matter how things look on the outside, living with a rare disease requires a huge amount of mental strength and it’s not the same on the inside.

So, today I want to celebrate and thank all of you who continue to show me such wonderful support, love and kindness.  I appreciate it so much.  And if I get tearful when you give me a hug or show me a small act of kindness, it’s not because I’m sad, it’s because I’m so appreciative.  Maintaining a positive mental attitude is absolutely critical for me and I feel very fortunate to have so many kind and wonderful people helping me to maintain it.  THANK YOU!

It wasn’t easy to find a good tune that actually had the words, ‘F*** You’ in the lyrics, but the uncensored version of Cee Lo Green’s ‘Forget You’ does the trick, and it’s a great dance tune (and I do love to dance).  It’s a fitting song for the release of the amazing Deborah James’s book, F*** You Cancer which came out last week.  I was honoured to be asked to contribute to the book – my story runs from page 190-196.  Deborah (@bowelbabe) has been a great friend to me throughout my treatment, giving me good advice ahead of and throughout my chemotherapy, and it was great to see her on such good form at her book launch last week.

Last week also marked an important milestone in the 30% Club’s campaign – we finally hit 30% women on the boards of the UK’s largest companies (the FTSE100).  However, we haven’t been breaking open the champagne as this is a collective 30% – some companies are doing exceptionally well and others are still below that level.  It also represents the target of our previous campaign that finished in 2015 – we are now aiming for 30% female representation across the FTSE350 Boards and, more importantly, 30% women in the senior leadership ranks (as a minimum).  Much more to do on that front!

And finally, I wanted to let you all know that I had a CT scan last week and as far as the consultants can tell, there has not been significant (>20%) growth since the last scan in early July.  I still have the disease and the gel (mucin) in my abdomen, but it’s stable for the time being and I’m feeling really well.  Back to dancing around the kitchen to Cee Lo Green!

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F*** You Cancer: How to face the big C, live your life and still be yourself

by Deborah James is published by Vermillion 

‘Summer breeze, makes me feel fine, blowing through the jasmine in my mind…’

The sunshine and warmth really does ‘make me feel fine’.  Today marks the 12th week since I finished my chemo and I am really feeling well.  I can taste things, my hair is growing back and I am jogging again.  In fact, I am planning to celebrate my 51st birthday on Sunday by running the British 10K in London with my 15 year-old daughter, India and my running partner, Madelaine.  I won’t achieve a PB in terms of time, but I will be pleased to be able to complete it.

Whilst I am recovering well from the chemo, the Oxaliplatin has done some permanent damage to my nerve endings – the only way I can describe it is that my fingers and the bottoms of my feet feel like they are permanently covered in wet sand.  Essentially, I’ve lost some of the sensitivity, so I struggle to put on earrings or do up clasps.  No big deal in the grand scheme of things.  I think I got off quite lightly!

The other bugger is the extra 14 pounds of weight I’ve gained with the chemo.  I know this sounds counter-intuitive but the strong steroids I was on to prevent sickness and keep my energy levels up combined with some odd eating habits due to change in tastes have contributed to my larger size.  Once again, it’s boring in terms of needing to buy new clothes, but I’m told that I was a bit thin beforehand anyway.

I’ve had a scan in the past week which has shown that the gel in my abdomen is growing again, but my blood tests show that my tumour markers are all stable and in normal range, so no tumours at this point.  I consider that a license to continue to ‘live life large’ and keep smiling.  Oh, and the recent recognition in the Queen’s Birthday Honours as a CBE (Commander of the British Empire) for my service to both gender diversity and finance helps as well!  The whole family are looking forward to going to Buckingham Palace in the autumn to collect my medal.  And coming back to my first point, let’s not forget this glorious sunshine.  I’m soaking it all up and savouring every minute!

It’s just over 3 weeks since my chemo ended and slowly I am getting my taste buds back.  I have started jogging at the weekends again but it’s slow going.  I know my expectations are too high, but I have never been one to have to stop and walk.  However, I am now finding that this is what I have to do.  I have to accept that it will take some time to get back in shape.

I had my end of chemo scans the week before last and also my follow up with Dr. Krell, my oncologist.  After the first 3 months the scans showed that the volume of mucin (fluid) in my abdomen has reduced and my blood tests showed that all of my tumour markers are in normal range.  At the end of 6 months the mucin volume was stable (the same as at the 3 month mark) and the tumour markers are all still in normal range.  As a result, we have agreed to stop the chemo and I will have a scan and blood test every three months to see how things are going.  This is good news.  As it’s low grade and slow growing, the expectation is that it will stay this way for some time.

It will take about 6 months for all of the chemo to be out of my system, but by 3 months I should be feeling back to normal.

I’m pleased with the result and very happy to be off the chemo and the steroids.  I’m looking forward to being able to enjoy food and drink again and as Kate Bush says ‘Running Up That Hill’ soon.

I had originally planned to use Yazz’s ‘The Only Way is Up’ for this blogpost, however this week it was clear that Sheryl Crow’s ‘Everyday is a Winding Road’ was more appropriate.  Overall, I’ve had a great couple of weeks.  The day before my last chemo I testified before the government’s BEIS (Dept. For Business, Energy & Industrial Strategy) Committee on the Gender Pay Gap, which was not as scary as I had anticipated – and the feedback was good.  I then had a brilliant final chemo salon on the 18th April with good friends, soup, bread and chocolate brownies.  It was followed by some great weather and a really nice PMP Well-being day at Basingstoke after I got my pump disconnected on the Friday.  Fantastic to meet others with the rare disease and to see how well they are all doing.  It’s a really supportive group.  I then had a fab visit and lunch with Joanna and Christy from Nova Scotia and Madelaine on the Saturday and I was feeling great and ready to get back to normal.  However, I was a bit shocked when I went for a 6.5km dog walk on Sunday and was a bit slow and short of breath.  Not what I had expected!  I thought I was still in good shape – but that is one of the side effects of chemo

Annoyingly this final chemo really knocked the wind out of my sails and I spent Tuesday and Wednesday being violently ill at home, having attempted to go into work both days.   I missed some great events and was gutted to be slowed down, but Trend and various friends reminded me that I had just finished a 12 cycle full-on dose of poison and I needed to accept that there would be some impact and that I should rest and recover.  I am definitely not a good patient and not good at taking it easy.  Happily I was better by Thursday and on the 5:50am train to London for a full day which ended with Fiona Murden’s book launch (Defining You) for which I wrote the forward.

I have been a bit slow this weekend and enjoyed a visit from Jeanette who was over from Canada.  Fortunately, I haven’t been ill since Wednesday, but I have definitely been a bit more tired in the evenings.  I am on the road to recovery, but I need to remind myself that there may be ups and downs along the way and I have to adjust for the downs and not have such high expectations of myself – even Wonder Woman must have some off days!

Wednesday is my PET and CT scan and then we see my oncologist Thursday – I’ll write an update after that meeting.

Still feeling upbeat and positive and while I will miss the social aspect of the chemo salons and the lovely Healthcare at Home nurses, I am so pleased not to be having chemo next Wed.  I will plan for a post chemo salon barbecue in June (we shouldn’t need chemo as an excuse to get together).

‘Everyday is a winding road

I get a little bit closer

Everyday is a faded sign

I get a little bit closer to feeling fine’