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Letter to a friend going through cancer treatment-Cancer Survivorship

Dear cancer survivor,

Pink RoseI am NOT going to lecture or say you MUST do/eat/read/this –  enough ‘friends’ will bore you with pet theories.  You will get used to them; smile sweetly and say nothing!

The best advice I had was from a friend who chaired a major cancer charity.  She took me aside to tell me “when you come home with the shopping, DON’T put it away.  Dump it in the kitchen and go and rest.”  She was so right.

There is a lot of ‘stuff’ out there.  Some can be useful, but before deciding on anything I made it a rule to ask where is the evidence?  Clinical trials serve a purpose;  people with serious medical training evaluate the results, and you don’t have to rack your brains to check things.

My favourite doctor told me “I always listen to my women patients – you know your body best “.  So feel something isn’t quite right? Don’t be afraid to question.

There are many theories out there, often centred around eating something – from grapes to goji berries.  Someone writes a book on “how I cured cancer by eating ………” ;  sometimes followed this up, only to find they are no longer with us.

You’ll get loads of ‘friends’ sending you the latest theory.  I smile, but the only ones I Excellence Dark Lime Intense 100gpay attention to are those that extol virtues of dark chocolate.  You may choose wine – or whatever is your poison. It’s ‘comfort food’; we need it.

Chemo Brain

Drugs ‘fog’ up your brain; although I suspect forgetting things is due to age, fellow patients managed to fool medics that it’s all down to the drugs they put us on.  So now you can blame memory failure on ‘Chemo brain’.  Medics don’t dare dispute!

Food

Warning – you can lose your appetite.  You’ll get very picky, probably can’t touch spices and smelly foods (cheese, garlic etc).  You may go off favourite foods.

We must eat to get adequate nutrition, but sometimes I got too tired to cook the simplest meal.  I asked a dietician what I needed to eat every day, then worked this out in units.  e.g. matchbox size piece of cheddar cheese, 1 or 2 hard-boiled eggs: things I could take out of the fridge to give me a protein fix, etc. How much milk or calcium I needed;  how many pieces of fruit/veg.  Out shopping I would buy in units, store these in the fridge and take them out to eat when I needed a meal.  Sometimes five snacks are better than 3 meals a day.

A famous ‘cancer’ hospital has published a Cancer Cook Book – don’t buy it!  The first recipe I opened had a list of over a dozen ingredients.  By the time I would have assembled these, I would have been too tired to cook the dish, let alone eat it!.

Now, if someone wrote a cook book –  ‘take three ingredients’ …

Avoid packaged ready-meals.  Many of us put on weight with drugs, and it’s a devil to shift.  Ready-meals usually contain sugar, etc.  ‘Low-fat’ meals often make up taste with added sugar. Black humour made a friend say she blessed MRSA as best way to lose weight.  Warning – not advised!

  • Avoid raw meats
  • In restaurants order red meat well-done.
  • Eat only fully cooked seafood (no sushi until you finish treatment)
  • Wash all produce carefully.
  • Eggs should be fully cooked. Avoid eggs cooked sunny side up and order Eggs Benedict only if raw eggs are not used.
  • Avoid honey. Just as infants under the age of one should not eat honey due to the risk of botulism, honey should be avoided by those who are immunosuppressed.

‘Dr. Google’

Doctors often sneer if we produce info downloaded from the Internet.  Yes, there are a lot of charlatans out there, preying on vulnerable people, but it doesn’t take much intelligence to sort out which websites to trust.  Now I go to the top American cancer hospital websites for invaluable information – French sites are good too, although perhaps not as informative. https://aftercancers.com/category/american-european-websites/

Treatment 

You will find the NHS is not ‘the envy of the world’.  During treatment I was working all over Europe, and found that European cancer treatment can knock spots off what we get.  Working as I did I could book myself into local hospitals and took advantage of this

If you live in London or the South East, it is worth investigating French and Belgian cancer care;  Brussels and Lille are within reach via Eurostar.  A friend has just used their service to Lyon, and come home raving at excellent and, he says, inexpensive French costs.

European system gives doctors time to TALK to us and discuss different options, rather than shoving pills at you.

Exercise is helpful, rather than antidepressant pills.  Or massage – during treatment in Europe I would be given this every day.  More info on https://aftercancers.com/is-massage-ok-for-cancer-survivors/

Some cancer hospitals and support centres provide massage for free;  take advantage of this, it make you feel good in yourself.

When discussing a prescription, ask if other options are available. Making informed decisions about your condition helps you choose best treatment for you.

Questions to ask before taking a new drug

What are Risks and Benefits of Taking this?By pooling expertise, drugs companies could develop new medicines more cheaply than any one firm

How Effective Is this?     

How Long Do I Have to Take this?       

Is Taking This Drug My Only Option?

I sailed through treatment UNTIL I was put on my first Hormonal Drug – Tamoxifen.  Starting to get side effects doctors didn’t know what to do – so I went to France where they knew how to help me.

Some medications, particularly antibiotics, cause allergic reactions. If you have had an allergic reaction to medication in the past, a prescription might be in the same family of drugs that caused your allergic reaction.

Read the ‘boring’ paperwork that comes in every packet of pills. Several times I  phoned doctors to say “the instructions say …..”  There would be a silence, then “perhaps you’d better come in – and don’t take the pills”.

Complimentary and Alternative medicine.

This includes massage, reiki, acupuncture, etc. – out of the mainstream.

Complementary medicine is when these therapies are used along with traditional Western medicine, and often there is medical evidence (e.g. massage) proving benefits.  

Alternative medicine is when therapies are used instead of traditional medicine.  Certain V.V.I.Ps have been advocates, and got themselves into hot water.  

Practitioners tried to lump the two together under the term CAM, but this was stopped.

European hospitals use Complimentary therapies e.g. massage because there is plenty of evidence;  but now never offered ‘Alternatives’.

There is a book called Trick or Treatment :  Alternative Medicine on Trial by Edzard Ernst (world’s first professor of complementary medicine) and Simon Singh.  Their honesty and serious investigations got them a lot of trouble from the Alternative guys;  I was at one lecture at King’s College where it was almost war. But they seem to have come through. They have a dry sense of humour and what they have to say about some Alternative therapies is enlightening.

 

Fatigue – this is a Bugxxr – with a capital B. It creeps up when you think everything is going well, and the only thing to do is take yourself off to bed for a good sleep.

Support Centres

Some of us think because we have fund-raised for these charities in the past, they are for Maggie's Manchester‘other people’.  Stuff and nonsense: now is your time.

There are centres all over – some small, others such as The Havens, Maggies and Macmillan are part of a large chain.  They all offer sensible support, often centred around a cup of tea (and sometimes home-made cake!).

Support covers massage, help with benefits, talks on nutrition and diet, Look Good, Feel Better sessions – and often very useful and interesting talks.

Overall

It’s impossible to say what’s going to happen; everyone is different, and reacts differently to the drugs used to treat your cancer.  Luckily the horrendous side effects of a decade ago have been largely sorted, (previously it was estimated 50% of survivors suffered side effects), and today drugs are better controlled.

Survival after Treatment

This is where it gets complicated.  About 12 years ago a Minister had the brilliant idea of devolving long-term cancer treatment from the hospital treating you, back to GPs.  Politically, this was a good move because it meant your care now came out of a different budget – so the Government could announce ‘NHS savings’.

However, this can leave you feeling abandoned, so Keep a note of names of those treating you and contacts,  so you know where to go for help if you have problems. GPs are GENERAL Practitioners, not SPECIALISTS, so may not know who can help. And sometimes you know something is wrong, but can’t explain to a GP.

Hopefully you won’t suffer side effects – but if you do, the bad old days of brushing these under the carpet are past,.  Today there are treatments and therapies to deal with them.

Good Luck!

 

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