Cancer Survivors finally being listened to when drug side effects hit

But why has it taken so long to help with drug side

effects?

Especialhy those with heart problems

It’s taken many years…… but finally ‘they’ are listening to usheart

Today, anyone battling with long term side effects from cancer treatment, is finally being listened to.  If you have heart problems, neuropathy, osteoporosis, lymphoedemia, dry dry skin, and other problems which turned up after treatment, and one dealt with alone, you are being taken seriously.

No longer do oncologists pooh pooh these conditions and blame them on your age, the menopause, or anything else to fob us off.

Brompton understands

But there are wonderful people who are helping us.

Sadly, they are a rare species – but the The Royal Brompton and Harefield Hospital in London has come up trumps.  US research identified that up to 25% of those of us who were given Aromatase Inhibitors (AIs) in the early years might end up with major heart problems.  I had been given the AIs Arimidex and Aromasin, and ended up having a 7-hour heart operation at The Brompton – with my oncologist (from another hospital) strongly denying that long term side effects from cancer drugs had anything to do with this outcome!

In the meantime, last year Macmillan produced  a Report: Cured but at What Cost, which served as a wake-up call to highlight that 1/2 million of us in the UK al/s.one have long term problems after taking Tamoxifen.  Some of which can appear years after we have finished taking the drug?s.

Dr. Alexander Lyon

Now, at an annual check-up. I found that the Brompton is on the ball, and has appointed Dr. Lyon as a Consultant.  He specialises in chemotherapy-induced heart failure – in other words, dealing with our long-term side effect affecting the heart.  With his feet firmly under his Brompton desk, it seems, hopefully, he will be there for some time.

I first saw Dr. Lyon two weeks ago;  he immediately grasped what my problems might be and sent me off for several well-co-ordinated tests (arranged on same day so I didn’t waste time) When I went for a second appointment he had gathered a team around him, to listen to me: . I felt I was at last being listened to.

In my first appointment he listened to ME, then patiently explained the what and why of my symptoms.  He was lucid, helpful and took endless care to answer my questions, in plain English.  He then outlined all the tests he was sending me for – and finally I had found someone who wasn’t going to brush my symptoms under the carpet.  I bounced out of his consullting room – no magic solutions were forthcoming, but at last I was talking to a professional who was doing something to HELP.

You might also be interested in this leaflet which Dr Lyon contributed to: http://be.macmillan.org.uk/Downloads/C ancerInformation/LivingWithAndAfterCancer/MAC14637Hearthealthandcancertreatment2014.p

How to see Dr. Lyon

If you live outside London, your GP should be able to refer you, wherever you live in the UK.

If you come from abroad, the Brompton has a superb private wing, and I know of one Government at least that sends their Nationals here from heart operations.

And if your doctor/oncologist won’t refer you?  Do as I do and book a private appointment.  And then transfer over to the NHS system.  And the tests I had at first can easily be done at your local hospital (blood tests. ECG, etc).

The hospital is in Chelsea, in the middle of shopping areas, and easily accessible if you have to make a day trip.  And the staff are very helpful – I had to spend a fortnight as an in-patient when I had my heart op, and when my surgeon said I had to stay in longer, all I could say was “Goodie”.

And even the food gets a thumbs up from James Martin, the TV Chef.

 Royal Brompton and Harefield Hospital  http://www.rbht.nhs.uk/about/

verite@greenbee.net

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