Archive for the ‘Healthcare at home’ Category

Osteoporosis and chemo

Saturday, November 7th, 2020

After returning from a fantastic family skiing holiday seven years ago, my three kids were keen to keep the memories going by running the videos through the TV. I sat back and was enjoying the show until I saw this little old lady coming down the slopes; who was she? She was stooping and looked quite frail. Slowly it started dawning on me that her ski wear looked remarkably like mine. Milliseconds later came the cold realisation that this stranger was actually me. How could that be? I was in my mid-50s then but felt decades younger, and had a wholly different mental image of me to the one I was staring at. I always stood tall too, or so I thought, but the camera never lies does it? I watched the video again and it was even more upsetting. I know I’m getting older, but that stoop was really ageing.

After a spot of self-diagnosis, I believed I had postural problem. My shoulders and upper back always felt stiff and my neck ached, which I figured went with the sitting-at-a-desk-writing-on-a-laptop-five-days-a-week territory. I needed to sort myself out, so I saw a physiotherapist for advice. Massage eased the stiffness fairly quickly and I was given exercises to strengthen my neck muscles and help combat my stoop. From now on it was sternum to the ceiling and shoulders back and down, chin tucked in. Problem solved – or so I thought.

After three years of walking like one of the Queen’s Life Guards, as well as taking yoga classes to strengthen my core and improve my posture, I was confident I was managing the situation until I went to my sister’s birthday party and the video camera came out again. Well, m’lud the evidence was incontrovertible; there I was chatting to friends and family, chin jutting out, neck at a 20 degree angle to the floor, back rounded. Again? Still? Maybe my stoop was a little more serious than I’d realised. As it turned out, it was.

I went to see an osteopath who examined me and said I had kyphosis. I’d never heard of the word, but it means curvature of the spine, where the top of the back to appears more rounded than normal. The word comes from the Greek ‘kyphos’ which means ‘hump’ and that’s what I was developing. The causes vary and include malformation of the spinal column in the womb, osteoporosis, spinal injury, spinal arthritis, poor posture and the ageing process. In my case kyphosis was caused by years of sitting badly, the fact that I was getting older (my spinal bones were weaker and becoming compressed) and the almost total absence of oestrogen. Oestrogen? Yes, oestrogen. And it’s a far more important hormone than I ever realised; had I known this a few years ago, I would have been far more proactive in negating its absence. Here’s the back story: I was 48 when I started the menopause thanks to the chemotherapy treatment I was undergoing, then I had both my ovaries removed as a risk-reducing procedure due to my faulty BRCA1 gene, which meant, from that moment on I had no oestrogen in my body, nada, nothing, yet it’s vital to many functions including the preservation of bone density. Who knew? Well I didn’t and no clinician thought to inform me, and I’ve seen so many. But back to the kyphosis. It was not considered serious and the condition could be prevented from worsening through specific exercises and lifestyle changes. If I did nothing, my stoop would gradually become more pronounced. You may never have heard of kyphosis either, but it’s an increasingly common problem, largely due to our more sedentary lifestyles and the fact that many of us spend too much time sitting hunched over our laptops, phones and tablets.

If your neck is beginning to jut forward – even if it isn’t – now’s the time to take action. The important thing is not to slouch and not to put undue strain on your spine. NHS Choices has lots of great advice to help you, for example: make sure your chair is supportive and adjustable; keep both feet flat on the floor to distribute your weight evenly; when sitting your knees must be slightly lower than your hips to keep the spine neutral; buy a laptop stand and separate keyboard and mouse, so you do not look down at your screen but across at eye level and, finally, make a conscious effort to hold yourself properly when sitting. I try to keep a straight back and my chin tucked in, I pull my navel in to my spine to work my abdominals and strengthen my core, but as I get tired, I start to slouch. So now every 40 minutes or so, I get up and move around, make a cup of tea, go to the loo, do lots of shoulder rolls, but I also go to exercise classes to stay strong, to stand tall.

I definitely feel better now, and think I look more upright most of the time, but I feel like I’m fighting my skeleton every single day. In truth I’m really fighting decades of bad habits and a lack of oestrogen, but what’s the alternative?

You shouldn’t have to queue for chemo.

Saturday, November 5th, 2011

I had the privilege of speaking at the National Clinical Homecare Association’s first annual conference. I was there to represent the patient perspective, and recount my experiences of breast cancer treatment both privately and on the NHS.

Here’s my speech; I hope you find it helpful:

Lorsque vous apprenez que vous êtes atteint d’un cancer, il est très difficile de réaliser complètement ce qui vous arrive. Que vous soyez jeune ou vieux, marié ou célibataire, les réactions sont les mêmes partout dans le monde: incrédulité, peur, refus… Votre cerveau refuse de comprendre et ne veut pas assimiler la majeure partie des informations données. C’est comme si vous écoutiez une langue étrangère: vous comprenez quelques mots, mais le reste est incompréhensible.

I’m going to hazard a guess that around 99% of you understood some of what I’ve just said. The odd word, phrase, sentence perhaps, but not everything. Well, that’s what it’s like when someone breaks the news that you’ve got cancer. Your brain doesn’t quite engage, and you miss huge amounts of information. It really is like someone is talking to you in a foreign language; you understand a small amount, but the rest is indecipherable.

By the time you’ve gathered your thoughts you’re in the system… havingconsultations, blood tests, an operation, getting dates in the diary for treatment, receiving handouts GALORE about side effects of the different drugs, more blood tests, meeting your breast care nurse, having treatment. But it’s good to be in the in the system, it’s there to help save your life, but you can easily feel overwhelmed, that you’ve lost control and cancer’s in control of you.

Not many of us have the ‘opportunity’ to experience cancer care both privately and on the NHS, but I did. I’ve had breast cancer twice in the last six years, so comparing and contrasting has been interesting and informative.
Initially, it doesn’t really matter if you’re on the NHS or private, when you hear the words: “it’s cancer”, you think you’re going to die and that’s it, your world’s over. Not long after that, you realise you’re not going to die and then CONTROL becomes a very important commodity.

I’d like to tell you a little story about control. My recent holiday experience in Mallorca with Ryanair in fact.
The family had had a brilliant time, and the last day was spent sightseeing in Palma before going to the airport. As soon as our flight was called, we made our way to the departure lounge and queued behind the priority boarding sign. The queue got longer, then the staff decided to change the queue for priority boarding. We all raced to the new location – this is Ryanair after all – and renewed the queuing. Then one of the staff told, not asked, told the first man in the queue to put his hand luggage in the little measuring cage. It went in after a little pushing, but that wasn’t good enough, he had to remove his laptop from the case. We all knew what was coming next: “you have two pieces of luggage, 40 Euro!” and she marched him off. We actually thought she was going to fingerprint him, but she just wanted to humiliate him, which she did, because she could. The priority queue changed again, but now most of us were locked together like a Rubik’s cube, so we all shuffled over, and when two Ryanair ground staff shouted at us to get into single file, we couldn’t. Then some of the children started to cry because the shouting frightened them and they thought their mums were going to be arrested for having oversized hand luggage. The delay in boarding, caused entirely by the staff, meant we lost our slot and had to wait in the plane for another hour and a half.

What did this teach me? That Ryanair had complete CONTROL but also that this kind of travel is an amazing masterpiece of logistics. Millions of passengers are processed and sent all round the world, very safely, 24/7. But a masterpiece of logistics leaves very little room for customer care or a bespoke service, yet we’re the paying customers.

In many ways hospitals are a little like airlines. They have to meet targets; they have to come in on budget; they have to keep the beds filled; they can’t let you ask too many questions in a consultation or the queues will be even longer than they already are; it’s a fast moving business. The problem here is that cancer’s not a business, cancer’s personal.

In 2004, when I was first diagnosed with cancer, I received chemotherapy at home. I was delighted by this, even though I didn’t know what chemotherapy was, I was on my own turf. The routine was as painless as it was simple:

• I met my oncologist who told me about my drugs and my treatment plan
• Everything was explained to me clearly and unhurriedly
• The dates and times for treatment were agreed with my chemo nurse
• I had the same nurse for virtually every treatment
• She was always on time
• The whole treatment was over within 2-3 hours max

I handled the treatment really well. I worked throughout it, only taking two days off for chemo. I had a great relationship with my chemo nurse Elaine – I could ask her anything and I’m still in touch with her seven years on. Most importantly, I’d timed the chemo to coincide with when my children came home from school. Even though I was plumbed in, we all had afternoon tea together. They could see that chemo wasn’t scary at all, and it took a load off them and off me too. I felt in control of so many aspects of my treatment and very confident about my future.

In 2009, at my five-year check-up, I found out that I had breast cancer again, another new primary. I no longer had private medical cover, but I asked my oncologist, the same one, if I could have chemotherapy at home. I received a very swift and definite ‘no’. I put forward the argument for home treatment, but it didn’t wash. So this was my new NHS routine:

• I met my oncologist who told me about my drugs and my treatment plan
• Everything was explained to me clearly and unhurriedly
• There was no choice of date or time, I had to fit in with them
• Then I had to queue…
o The first queue was for the car park (I usually ended up in an NCP)
o The second queue was in the outpatients waiting room
o The third queue was in the oncology corridor, where everyone was also weighed in public view
o The fourth queue was in the chemotherapy waiting room
o Finally, I got to have chemotherapy, sitting alongside ten people, each accompanied by a friend
o The whole process usually took five hours, but one day because of staff shortages, I was there for seven hours

And, as I rarely had the same chemo nurse, I couldn’t build a relationship as I had previously.

I still continued to work during treatment, in fact I had set up my own company, but if anyone asked me how I felt on the third day after chemo, I’d start crying, but I had no idea why. Generally I just didn’t fare as well second time around; I didn’t feel as “good”. Was it because I knew what was coming? Was it because I was five years older? Was it because I had no input? While I cannot fault the medical treatment I received, I used to hate the days I had to go to hospital for chemo.

I believe it had more to do with the lack of CONTROL, the impersonality of it all and the utter frustration of hours just spent queuing. Whether you have private health cover or not, no one should have to queue for chemo.

I’ve been very explicit about my home care and hospital care experience, but perhaps you’d like to hear how we all might be ablehelp to improve the patient experience still further? When I first had cancer the sheer amount of stuff I received was formidable. But it was also very cold and often didn’t even scratch the surface of what was for me intensely important. For example, why didn’t anyone tell me how to prepare for the possibility that I might get diarrhoea at work? Because I did. Why didn’t anyone tell me I could lose my fingernails and toenails? Because I did. Why didn’t anyone tell me that I might get cording and how to deal with it? Because I did. Why didn’t anyone tell me running would alleviate my joint pain brought on by chemo? Because it did. Why didn’t anyone tell me that I could still enjoy a drink at the end of the day, as long as it was sweet? Because I did.

I want information that I can assimilate easily; it should be delivered in a way that enables and empowers, that inspires and builds confidence; it’s about being creative with what you’ve got – just changing little things can make a big difference.

A great example of doing something very small but creative, which has improved the customer experience (and saved money too) is at Schiphol Airport in Amsterdam. Has anyone here used the men’s urinals there? There’s a small black fly embossed in each urinal. It was put there to help improve the user’s aim and it worked. It reduced cleaning times, and therefore costs, and made visiting that loo a pleasure not a pain. It’s a practice that is being adopted all over the world.

I’m sure, with a little more creative thinking, plain old information about cancer can be delivered in a far more relevant manner, more interactive, more encouraging, tailored to people’s lifestyles today, NOT the lowest common denominator. I don’t want to be told what I can’t do; I want to feelinformed about what I can achieve.
I believe there are people here today who can help make that happen.

If you’ve got to have chemotherapy, did you know you could have it at home?

Wednesday, July 29th, 2009

One of the perks of my job was private medical insurance; in fact I’ve always had it, but never needed to use it until I was diagnosed with breast cancer.  As you may know, medical insurance cover has many benefits; for me it meant choice as to when and where I had my treatment.  What I have been amazed to learn since then is that many patients can now get the same choices on the NHS!

This choice meant I could have chemotherapy in the comfort of my own home or I could have it in hospital with several other patients, at the same time, in the same room.  Being with others in the same situation can be a real help for some people. You can chat about the changes to your body, exchange views and even have a laugh, though you may still get chance to do this at patient group meetings or when you go for your check-up.  For those who’d prefer more privacy during their treatment, just don’t want to talk, or don’t feel well enough for company, this is torture.  I opted for home treatment.  I’d feel at ease and, more importantly, my children could see chemotherapy in action.  It’s common sense I know, but understanding diminishes fear and I believe that being able to watch me having cups of tea, chatting to my wonderful cancer nurse Elaine, and generally being relaxed during each session was an enormous relief to everyone. Me too.

When the day arrived for my first chemotherapy session, I had no time to be apprehensive, as I had to attend a client meeting that morning. (I had been told to have a very peaceful day before the treatment to prepare my body for the drugs, but circumstances at work made this impossible.) The meeting ran on and I had to race home to be there before Elaine.  We arrived virtually at the same time, and then a procedure began that would be replicated over the next six months.  I would sit in a comfortable chair with a drip next to me, a hot wheat bag, straight from my microwave, placed on my arm to warm it up before the drugs (which had been refrigerated) were administered.  While I was being warmed up, Elaine would ask me all sorts of questions before showing me the drugs and confirming the dosages with me.  She would then insert a cannula into my hand, through which all the chemotherapy drugs would be infused (which means the drugs were very gradually introduced into my body).  First though, a saline drip was set up. This would dilute the drugs as they were injected into my veins; a necessary precaution as chemotherapy drugs are, literally, poisonous and would seriously damage my veins without dilution.  Your veins may be damaged – you’ll know if this has happened because your arm will become too painful for intravenous medication – so you’ll have to change arms.  It did to me and I had to keep changing arms after my fourth treatment.

In addition to the chemotherapy drugs, anti-sickness medication and steroids were also injected, so the whole process would take between two and three hours.  The first session passed off without incident, and the children were home from school in time to see me “plumbed in.”  Once Elaine had left, the children and my sister kept checking that I was still OK.  I actually felt no different, but nevertheless we all waited for me to spontaneously combust.

After my first session, I felt no apprehension or fear.  Of course, I didn’t always feel on top of the world, but I could at least face the world.  And, as this was going to be my regime every three weeks, for the next six months, and it was helping me get better, how could I resent it?

If you’d like to know more about having your chemotherapy at home, you should contact a wonderful organisation called Healthcare at Home (www.hah.co.uk) who looked after me.  Their expert nurses give chemotherapy to thousands of patients each year in the comfort of their own homes, and most of this treatment is actually paid for by the NHS rather than private insurance. Strange but true, drugs administered in the community, in other words ‘at home’, are exempt from VAT, so that alone begins to make home treatment financially attractive for the NHS.  Add to that the resulting reduction in waiting times in outpatients and the pharmacy, the freeing up of valuable nursing staff and fewer patients needing hospital transport, there is no wonder that more and more NHS Trusts are taking home treatment more seriously.

If a home service is not offered to you by your doctor, whether you are an insurance patient or an NHS patient, just ask; there’s every chance that he or she is unaware that home treatment is available.  Your doctor should contact Healthcare at Home, and they will be able to give advice as to what is possible, so that you and your doctor can then decide whether home treatment is the best option for you.