A Hard Day’s Night

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Today has been a bit of a rollercoaster. Brenda had an issue with her pain relief running out this morning. The term ‘patient’ has an implied direction in it, but this shall we say, casual approach to her care, necessitated the ‘squeaky wheel’ option to be taken and by the time I arrived, some oil had been applied.

A whole slew of good things then happened. A shower sponsored by Jo Malone, whose shares must be going through the roof. Then the news that Brenda’s catheter and last drain would be removed, which would make her more mobile. A certain amount of trepidation greeted this news, but both procedures, I’m happy to report, passed without incident. This was followed by a spot of physio, a brief performance on the parallel bars and some step climbing. Adele, soup maker extraordinaire, paid a visit and by the time she left, the stuffing had been well and truly knocked out of Brenda.

This afternoon she had a procedure to move her central line from above her clavicle to her jugular. The operating theatres are cold, and by the time she returned, she was freezing, feeling a bit knocked about and on top of that, everything clouded by anaesthetic. She will be fed through the central line for the next few days. She is desperately thin and there is no need or any great incentive to rush headlong into a menu of jelly and ice cream.

Here’s hoping for a good night and a day where she can enjoy being able to race about the corridors.

Hot for Tea-cher

IMG_3484Okay, so I’m pushing my luck with the song titles but, the tea is a good sign. Walkies, blood pressure down to normal, epidural out and main incision dressed. You name it we did it, baby, that gal was cooking with gas today. Hair-wash, a walk down the corridor, and the green light to move out of intensive care tomorrow. She even voted. Lots of snoozing too, I hasten to add but lots of positives today. The Wonder Woman dressing gown ( a gift from the Queen’s ladies) will be revealed in all its glory when Brenda next goes walkabout.

 

Under my thumb

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A plan to get Brenda out of Intensive Care today didn’t come to fruition. Her blood pressure is still low and the nurses are trying to coax it upwards. Lots of good things though. She now looks more herself and was able to Facetime her Mom to sing her Happy Birthday. The physios managed to ease her into a chair for two half-hour stints and she also made two exploratory circuits of the ICU unit supported by a gaggle of acolytes. Very importantly, she was able to give her son a kiss in the flesh. I left her this evening freshly plumbed into a unit of the red stuff in the company of Madelaine.

The Lady in Red

 

IMG_5790Wonder Woman has hers and here are our own Superhero’s red booties. Brenda’s second physio session of the day saw her sit in a chair for ten minutes. Earlier in the day she had been coaxed into a sitting position on the edge of the bed so something of a quantum leap. She also enjoyed a bit of a wash and brush up but, clearly tired out by all this activity conked out.

The trajectory of the route to recovery isn’t always upward. Such early days but, nevertheless, today was a little bit of a reality check. She is looking more like her old self but was happy to zone out in her own world for protracted periods.

Great for Brenda to see Bridget Jacob (who stayed overnight nearby and did a double shift) and Madelaine Verchere who will stay into the evening. I’m now home with India and will be having a home-made soup courtesy of Adele Cleaver. So many people to thank Sam and David on Bonzo watch, Louise, Greg and Kirsteen with India. For the moment it suits India and me to have as few moving parts as possible. We are happy to be home together and I will catch up with Teddy tomorrow who will take the train into Basingstoke from Bristol.

 

 

The long and winding road

‘At least it is done’ is the main thing we took out of yesterday. Team Trenowden has had less bumpy days, it is safe to say.

I spoke to Brendan (surgeon) midway through the operation. He found the tumour to be worse than he thought. A real tangle and he was very despondent. He and his team worked very hard to untangle things and in the end things worked out better than he anticipated.

Surgery complete Brens is in ICU. Our friend Phillippa (ICU nurse from last time) has been in attendance and I can’t emphasise what a fantastic thing this has been for me. A calm, steady and reassuring hand. The toll on Brenda cannot be understated. Her muscle wastage was plain to see for everyone and that basketball on her tummy didn’t just get there of it’s own accord. I think we all knew things were pretty serious.

As I write to the rhythm of her ventilator we wait for her to be bought round. She has been fighting the sedative so she is ready to rejoin us all at about 9am.

ABBA on the radio, she’ll be dancing before we know it.

My Hero (Foo Fighters)

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I’ve had such a phenomenal past couple of weeks, I haven’t had time to think about what I have ahead of me a week from Monday.

First of all, we launched the latest 30% Club campaign ‘The Missing Millions’ at the London Stock Exchange last Friday morning.  Although it was my third time opening the market, it was still very exciting.  In fact, I was told that it was one of the biggest and best market opens at the stock exchange.  We had a fantastic group of global CEOs as well as the Chair of the Stock Exchange for our opening panel followed by a brilliant panel moderated by my dear friend Christiane and a standing room only theatre of wonderful supporters.  It was the culmination of a year’s work from our very dynamic workgroup and the start of what we hope will be a movement of companies coming forward with examples putting a gender lens across everything they do – from product and service design to marketing and advertising, supply chain and strategy.  It was magical.

On top of that, I’ve had many lovely dinners and drinks evenings arranged by various groups of friends – all of which were great fun and have forced me to spend time catching up with people and counting my blessings for so many wonderful friendships.

And then last Sunday evening India and I joined my friend Emma and her daughter Alice to see Hillary and Chelsea in conversation with Mary Beard about their new book, ‘Gutsy Women’.  It was a super evening and all three were inspiring.  I was then pleased to be invited to see Hillary in conversation with my friend Julia Gillard on Wednesday at King’s College.  I told Julia about Hillary’s presence in hospital with me almost 3 years ago (in the form of a life-sized cutout, courtesy of Gabrielle), and I asked if she could introduce me to her – and she did.  I have to say that it was a real highlight for me.  Hillary was warm and engaging and she had incredible presence.  I had to stop myself crying (which I find myself having to do a lot lately).

Roll forward to yesterday (Friday) when Trend and I found ourselves back in Basingstoke for my pre-op stuff – blood tests, heart rate, meet the anaesthestist, etc.  The nurse who took my blood, Naomi, remembered me from the first time around and asked if I would be bringing Hillary back this time which helped lighten the mood.  Otherwise, it was all a bit real.  A week from tomorrow we check-in and then on Monday morning I’m off to be sedated at about 7:30am.  I was reminded that even though there are fewer organs to come out this time, the fact that it’s my second op means that it will be more complicated and it will be very similar to the first in terms of recovery.  I’m hopeful that they’ll open me up and find it isn’t quite as bad as they expect.

Trend will pick up the blog post for a while and will report on things when I’m out of surgery on Monday evening.  I expect to be in Intensive Care for at least 4 nights, and then back on the Lyde Ward as before for another two weeks.  But we won’t really know much until after the op.  I’m getting to the point now where I just want to get it over with and get started on the recovery.

‘Galvanize’ (Chemical Brothers)

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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 25th 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 25th November – all of your supportive comments mean so much to both of us.  It really helps to know that we have such wonderful friends.