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The challenge of caring

9 Jul

This blog was supposed to be all about my fundraising for younger bowel cancer patients and the reasons why I’ve embarked on the challenge – but I’d rather like to morph it a bit.  I plan now to interweave some posts on other topics as they grab my attention, in-between posts on Bowel Cancer UK‘s Never Too Young campaign and my own attempts at fundraising so here goes….

“Too often we underestimate the power of a touch, a smile, a kind word, a
listening ear, an honest compliment, or the smallest act of caring, all
of which have the potential to turn a life around.”

Leo Buscaglia


Recently I became aware of this wonderful painting by Goya ‘Self Portrait with Dr. Arrieta’ painted in 1820.  Apparently in his early 70s, Goya was very unwell but was so impressed by the care of his doctor that he painted it in thanks.  How wonderful!

I too am frequently blown away by the amazing high quality care and dedication shown by many wonderful doctors and nursing staff in the UK and I am so grateful for them.  Yet I am also regularly inspired by many unsung heroes – unpaid carers – who should also be acknowledged and celebrated.  Unpaid carers are frequently family members and friends who often suddenly and unexpectedly find themselves in a care role when a loved one becomes unwell.   This unwelcome change of life can be so hard financially, emotionally and physically.


A recent research report entitled ‘Prepared to Care?’ launched during Carers Week in June highlighted that carers are being woefully let down by a lack of support when they first take on a caring role. The statistics are shocking:

75% were unprepared for caring role

81% said they were not aware of the support available

61% of carers have experienced depression

92% of carers say they feel more stressed because of their caring role

35% believe they were given the wrong advice about the support on offer

According to the Carers Trust  and Carers UK there are around 6.5 million carers in the UK and 6,000 people taking on a new caring role every day.   It really concerns me that they are not getting the information and support that they need.  I regularly talk to the families of bowel cancer patients and the strain is often palpable.   It has made me wonder if the lack of support and information is because there is a lack of understanding about what they do or how a loved ones health condition can impact adversely on them.    Of course the focus must be on the patient yet I don’t believe this should be an either/or – carers also need support to enable them to provide care and to maintain their own health and wellbeing.

During Carer’s Week in June I was fortunate to be invited to share my experiences as a ‘carer’ at Leukaemia Care‘s regional conference.  Of course my experience was of simply providing emotional support, rather than intensive physical care.  Yet as I prepared my speech (posted below) I was surprised to realise that the emotions remained so fresh and raw even though it is 10 years since his diagnosis.

I see my own experiences repeated in the families of bowel cancer patients I’m in touch with.  Of course many people have a much tougher time than me, but I think my personal insight gives me an ability to recognise the issues and empathise.   Through my job at Bowel Cancer UK I regularly witness the strain and terrible fear experienced by family members. I see the tears of worry and sometimes grief and feel the emotional strain it causes.

Surely we must all recognise this and ensure that ‘Carers’ vital role in health and social care is acknowledged and that they have access to information and support they need – including respite care where necessary.  I am convinced that apart from just not being good enough, if we don’t act and instead continue to neglect them then we risk creating a far greater health problem for us to tackle.


Speech for Leukaemia Care’s Regional Patient Conference in Worcester June 2013

I met my husband Rogelio (or Ro for short) just over 11 years ago.  It had been a hard few years – I’d recently got divorced from my husband of 10 years and was trying to keep everything stable, balanced and happy for my two little boys, Robert and Alex who were then 4 & 6.

Rogelio arrived like a knight on a white charger and brought sunshine and laughter back into my life.  He was brilliant with my boys with endless patience and energy to play football or have water fights.  He could even do magic tricks much to the boys delight.   He was sunny, friendly, positive and I think what I liked about him the most was that he always went the extra mile for people – for us. 

We bought a new house together – I left full time employment to become a self employed consultant so I could balance my life better and spend more time with the boys.  We planned to get married and hoped to have a baby of our own together.    The future looked so wonderfully bright. 

Yet in the first part of 2003 Rogelio started to get tired easily and his legs would ache terribly.  He also started losing weight.  I persuaded him to go to our GP.  It was a disaster – he was sent away and told to get fitter. Ro felt totally humiliated. I was furious.  He was a very fit, active man so the GPs response was silly.  But we decided it meant it couldn’t be anything serious and moved on.

Just before we got married he developed a terrible cough.  Our lodger suggested something really serious could be wrong.  I didn’t want to hear it. I was actually quite angry because I felt he’d worry Ro – surely he was just tired, run down, had a bug. Maybe he needed antibiotics.  He didnt want to go to the doctor and we agreed he’d go after our wedding and honeymoon in Edinburgh if it hadn’t cleared up.

By the time we were married on 4th July 2003 he’d lost a couple of stone in weight.  To my eternal shame I didn’t see how dreadful he looked yet today I can’t bear to see the photos of him as he was ridiculously thin.  But life was busy – with the new house, new job, wedding and baby plans.  I was also simply naive.

It was when we were in Edinburgh for our honeymoon that I knew he really wasn’t well…but still I just thought it was a bug.  Cancer had absolutely no resonance in my life – it happened to other people.

Whilst we were away he was very low in energy – really tired, had a very distended upper part of his tummy (I had no idea that was his spleen!).  His cough also hadn’t gone away.

When we came back he went straight to the doctor who referred him, thankfully, for blood tests.  We were having a wedding party on the Saturday at home so decided to stop at the local hospital on the Friday to get his bloods done and then go and buy all the food for the party and start preparing.  As we arrived home the phone rang, it was the hospital calling us back in and they told us to pick up a letter from our GP first.  The letter was to hospital admissions… Wow now we were really worried.

He was admitted and we sat around for 2-3 hours with confirmed diagnosis on his notes waiting to see a consultant to know what he had.  Late afternoon the consultant came round and two weeks to the day after our wedding, he broke the news that my darling love had chronic myeloid leukaemia.  

It was quite simply appalling.  If normal white blood counts are between 4 and 12, his was 344 off the Richter scale.  We asked if it could be treated or whether he was going to die? There was my strong positive husband sobbing and scared.  He stayed in hospital overnight and I went home to cancel our wedding party.  He started chemotherapy that day instead. He was 42 and I was 34.  I’ve often felt that July 19th 2003 was the day I really grew up and lost my innocence.  

Over the next few weeks, everything crumbled – I had an early miscarriage, all our hopes evaporated and for a while we lost our ability to dream.  No baby, possibly no husband, no future.. What would I tell the boys?  Rogelio was the patient yet my life felt destroyed too because my hope for my life was to share it with him.  

It felt so damn unfair.  I did all the why us, why me thing and wallowed in grief and self-pity.  We cried a lot in those early weeks and read a lot – much of which scared us even more, yet we felt that in information and understanding there must be power.  We also agreed we were going to be each others support and that we were going to talk about it. That meant sometimes Ro needed to comfort me but in that way we found our strength.

He started his treatment at Farnborough hospital in Bromley and we were so grateful for the kindness of the consultant and an amazing specialist nurse called Ali.  After a few months he was transferred to Kings College Hospital who were running a trial for a new drug Glivec which was having good results.  

But Kings was a shock – the queues, the waits, the number of people, the lack of continuity of care.  An appointment took up almost a whole day.  I found it very difficult to feel so out of control, probably even more so than Rogelio.  This was my husband’s life and I was expected to trust them with it.  I struggled with that.

Slowly I realised what my role was.  Of course to love and support Rogelio but also to be his advocate.  Because English isn’t his first language (it’s Spanish) whilst even back then it was excellent, he found it more difficult to express himself in the stressful straining hospital situation.  So we talked each visit through – considering what we needed to ask beforehand and what we’d understood afterwards.  I attended pretty much every appointment with him for the first 5/6 years until things calmed.  That was a key learning point about how important it is to take someone with you to key appointments – to think your questions through beforehand and to take notes of results because you won’t remember or get to ask those burning questions if you leave it to chance. The emotion of it all is too powerful.

I’ve also held his hand and re-assured him through endless awful bone marrow biopsies and discovered the pain level varies with who is doing it.  It’s been my role to remind the registrar to give him more anaesthetic before they take the bone out.

In the Autumn just a few months after his diagnosis I became pregnant.  That felt significant – yah… we’d begun to dream again.    We were so happy but also concerned.  We asked for a referral to the Harris Birthright centre for indepth antenatal scans as we were worried about the impact of the chemo and then glivec on the baby as no research had then been done.

In fact there was one particularly horrendous week when we were getting the first results which would tell us if the glivec was working and our first scan.    We were feeling stressed and frightened when we had Ro’s appointment with the registrar.  This was the day, or so it felt, that we would hear if he was going to live.  The registrar didnt know anything about us, hadn’t read the file, hadn’t got the results – was simply totally unprepared.  He called for the results in front of us and just said yes they seem fine. Ok?

We were shocked, I could see Ro’s ashen face and I knew I had to say something.  So as calmly as I could (bearing in mind my pregnancy hormones) I explained that no it wasn’t ok he was unprepared, and no it wasn’t ok that he hadn’t explained the results and that we realised he was busy and this was his job but this was our life.    His response was great actually as he apologised profusely and admitted he had got it wrong.  He eventually became one of our favourite registrars!  I think that’s a key learning point – sometimes it just isn’t ok and to ask questions and to expect answers you can understand is important.  The really good clinicians are absolutely fine with that. 

The baby scan was next – such wonderful news we were having a baby girl and she looked fine.  After six long months we were headed in the right direction.  

During Rogelio’s treatment we have learnt a lot.  We dont have clinical training but we have needed to understand because we realised we are paying much more attention to his care than anyone else.  Listening, taking notes, googling to understand is vital.  There was one period that this became particularly important.  We suddenly realised there was no case work supervision at Kings back then.  One registrar would contradict another and the Head of the Department would take an entirely different course of action to his staff.

18 months /2years or so into Rogelio’s treatment his results weren’t as good as they should have been. We’d been told to expect a significant reduction in his white blood count yet it had slowed dramatically.  The registrar said it was fine and just to continue.  We were surprised.  By random chance Ro’s next appointment was with the Professor, the head of the department – he commented the results weren’t right, gave him a 2 week glivec holiday and upped the dose to 800mg from 600mg.  This made sense to us.  I asked the registrar at our next appointment about it and how clinical decisions were made – and discovered they only referred back if they were unsure and she was honest enough to say she wouldn’t have considered the Prof’s approach.  As the appointment ended I asked her to check what she had told us to do with the Prof to ensure he agreed with the course of action.  Good to her word she did and called me a little later to tell me that no he didn’t agree and he wanted to do something different.  The point was made and it just wasn’t good enough.

From then on I insisted Rogelio see the consultant at every appointment to ensure expertise and consistency of care but also felt honour bound to feedback that the process needed to change.    I hope that my feedback, along with I’m sure many other people’s, contributed to a new casework supervision process being put into place.  They now review Ro’s case and pick him out to see the consultant if there is anything of concern.  Hurrah.

Cure is not an option for Ro.  A bone marrow transplant is too high risk due to his age and lack of a full sibling donor so we need the drugs to work.  Even the very highest dose of glivec never pushed him into a full remission – close but not quite.  Then after about 5 years on the drug he started to develop a resistance… We were back on the roller coaster.  Thankfully in the intervening years there was another drug he could take – dasatinib – he’s now been on that one with minimal side effects for around 4 years or so and just recently, nearly 10 years after diagnosis he had his very first results which said the cancer was undetectable.  How amazing is that!  We need another couple of results now to prove its not a blip but even after all this time, it gave us such joy and hope.

Cancer has affected every aspect of my life – perhaps bizarrely even more profoundly than Rogelio’s. 

For example, our beautiful little girl Gabriella Anne was born on 11th August 2004 by Caesarian section.  Cancer had a part to play in that.  I had a minor infection around her due date and there was a slight risk it could harm her.  As Rogelio had only been diagnosed just a year before it just didn’t feel remote or unlikely another terrible thing could happen so I opted for a C section which would, I thought, guarantee she was ok.  When we discovered more recently that she has learning difficulties – she is dyslexic, dyspraxic and dyscalculic – my first thought was that perhaps it was our fault.  That Ro had still been too ill when we conceived her, that the drugs had affected her.  Of course it’s silly and pointless to wonder as we will never know.  Yet I have grieved again for the easy life I wanted her to have – perhaps more than I might have – because she was, after all, our miracle baby.  Our hope in our darkest times and again I’ve played the victim and cried for the injustice of it all.

Funnily cancer has helped me though.  Through cancer I’ve learnt about victims and survivors and chosen to be a survivor where I’ve used the knowledge I’ve unfortunately gained to benefit others.  I’m still on that journey for Gabriella.

When Ro was diagnosed I was working in international human rights and development and hoped to live and work overseas.  Now Rogelio’s drugs are paid for by what was our local Primary Care Trust now Clinical Commissioning Group we can’t leave the UK.  So after my father developed and sadly died from bowel cancer, 4 years after Rogelio’s diagnosis I decided to change direction and do something positive with my newly acquired knowledge.  I’ve now worked for Bowel Cancer UK for 5 years and been Chief Executive for four.  I love it and am incredibly passionate about what I do because I get it… I may not have been a cancer patient but I’ve been through the journey. It’s affected my life and sometimes my health and well being profoundly without anyone really noticing or offering support and that’s ok I’ve found the positives.

For me they are:

1. I love cancer drugs for Chronic Myeloid Leukaemia (and I’d like something similarly amazing for bowel cancer) because my husband is alive – not cured – but here with a great quality of life.

2. I have a job I love and I have the opportunity to work with amazing people.  Through Rogelio’s treatment and my work I’ve met some inspirational pioneering clinicians and thank goodness for them – including the fantastic specialist nurses who make such a difference to people’s well being.  We need more of them.

3. I know very clearly what charities like Leukaemia Care and Bowel Cancer UK should be doing.  My husband was lucky he had a gobby wife to fight his corner – to be his personal advocate.  Not everyone has that or feels comfortable.  Our charities need to be that voice – to lobby for the best care for everyone irrespective of postcode and to hold NHS, private providers and the Department of Health to account if it is not in place.

4. Best of all I’ve learnt a lot about me including about my strengths and weaknesses.  I’ve learnt that I can choose who I am – it’s not easy… But I have become a determined survivor and always look for the positives even out of the darkest situations. 

Thank you

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