Brenda won't back down

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’

I can’t believe that next Wednesday is the last of my chemo for now – 12 of 12 will be done.  It’s been unpleasant but surprisingly bearable.  My chemo nurses can’t believe how well I have tolerated it.  Don’t get me wrong, the symptoms are nasty and I can’t wait to get back to normal, but in the grand scheme of things, I’ve been lucky that I have been able to continue working and campaigning for the 30% Club full-time.  The last chemo coincided with the deadline for Gender Pay Gap reporting in the UK, so it was a busy week with tv and radio interviews – I even managed to do 4 on chemo day, two of which were during the chemo itself.  Teddy couldn’t believe that all of my friends were able to suddenly quiet down while I did my radio interview as I had the usual salon of amazing women.  I had wonderful homemade soup from Sam, delicious sourdough bread brought from London by Anne and fab brownies from Annie (and lots of other nice gifts and treats).  I am so fortunate to have such a wonderful support network – I am truly spoiled by my friends and family.

I visited my amazing surgeon Mr. Moran in Basingstoke this morning to discuss a redo surgery.  Happily he doesn’t think we need to do anything at this stage.  It’s likely that I will have to have the surgery again in the future, but there is no justification for it now.  I do have fluid again, but the chemo has reduced it.  My tumour markers were all back in normal range at the last scan, and I have no symptoms from the disease and no sign of tumours at this stage.  We will know more when I have my next scans in early May and see the oncologist, but based on the scans at the halfway point, the view is to scan every three months and keep an eye on things, but do nothing for now.  It seems that systemic chemo is not usually effective, but the doctors were ‘fascinated’ to see that it had had a positive impact for me.  I am happy to continue to be ‘fascinating’ as a case study for them!

So for now, I am anxiously awaiting the next Salon on Wednesday so I can anticipate getting my taste buds back, having a normal head of hair again, losing my steroid puffiness and bad taste in my mouth.  I’m also looking forward to getting rid of the sore feet so Madelaine and I can get back to our running as the weather improves, and I can’t wait to be able to drink cold drinks again and eat cold, healthy food again – smoothies, yoghurt, salads, fruit, etc.  I am really going to appreciate food and wine when I’m able to taste them again!

So much for a day off for Chemo Bloodwork. We have just two chemo sessions to go then we can say goodbye to the noxious clear liquids. There has definitely been some wear and tear on her but, Brenda keeps on keeping on. For an update, if you missed her on the World Service yesterday or BBC Five Live this morning, she’ll be on Newsnight tonight.

The BBC Newsnight bullet dodged, we are back in the swing of things at home. Brenda has just finished her eleventh chemo session. A fabulous turn out to the ‘chemo salon’…we’re going to have to get a bigger driveway for the last one in a fortnight’s time.

 

 

 

Friday afternoon and I am sitting at Heathrow waiting for my driver.  I’m just back from a quick business trip to Zurich and despite the cold, it was really nice to just be out with colleagues pitching business to a client and being normal.  As it’s 9 days since my last chemo, I am feeling really well.  Side-effects were bad just after Round 8 and I had the added pleasure of red sore heals this time round (which has prompted the wearing of some great bling silver and gold trainers) but I seem to continue to be able to bounce back each time, which is great.  I will admit, however, that the snow and cold weather we have had over the past week has been a challenge.  Thank goodness for my Canada Goose parka and hand warmers.  I wouldn’t be able to function without them!

I’ve been connecting a lot lately with my closed Facebook Group – PMP Survivors – and have realised that this really is just a blip and I am dealing with a very slow-growing, low-grade cancer that is not going to affect me in the near term.  Lots of people are kicking around many years after diagnosis or surgery (15+ years) and are stable.  I know that I will be in that group.  I am feeling very positive and upbeat and happy with my life.   My health and fitness are great, other than the side effects of the chemo (which will go away when I finish in mid-April).  It’s been a wonderful experience being part of this group – everyone is so supportive of each other and there are members from all over the world.  It’s a massive endorsement of the positive aspects of social media.

Next week is International Women’s Day, so weather and temperature-permitting I am going to go into work on Thursday with my chemo pump hidden away in  a snazzy cross-shoulder bag.  I missed it last year and I don’t want to miss it again this year.  Nothing more to report this week.  I’m just conscious that I haven’t written in a while and I don’t want anyone to worry.  The main reason is that I’ve been really really busy, which is great.  Thanks again for all of your support and warm wishes.  I’m soaking them all up!

Fortified by a week of half term sun.