Having Fun After Cancer

HAVING FUN AFTER CANCER!

After radiotherapy and chemotherapy for cancer, you could be on drugs for several years. These are Hormonal Drugs, designed to help you live longer. But - side effects can still cause problems, and a recent survey said these effects cause 50% to come off these. But there are fun treatments, lovely creams and NHS products that help you overcome these nasty side effects .

CANCER DRUGS HAVE HORRID SIDE EFFECTS - BUT THERE ARE WAYS OF DEALING WITH THEM .
WHATEVER YOU DO, TRY AND STAY ON THE DRUGS; SURVEYS PROVE WE LIVE LONGER if we have taken the full course.
Europe has far better cancer survival rates than we do in Britain; I am sure this is because their patients are listened to, given help with skin problems, regular massages to get rid of drug toxins etc. - yet when I ask our Department of Health what plans they have to study European cancer care, they tell me "we have nothing to learn".
So whilst those arrogant dinosaurs dig their heads further into the sand, I have been ferreting around Europe and found what cancer patients are given there, and what products help them - plus what I have found out myself.
Hopefully some of my ideas will be useful for you.
This guide has ideas on what to do if you get side effects, affecting
BODY SKIN EYES FACE HANDS
JOINTS LYMPHOEDEMA NAILS
HAIR SCARS FEET
EXERCISE TREATS AND PRESENTS
WHERE TO GO ON HOLIDAY
Look for relevant headings for suggestions on dealing with your problems.
At the end of the blog I deal with
USING MASSAGE AND EXERCISE to counter build-up of toxins in the body that cause fatigue, and how to get further help.
And places where the whole family can go on holiday, whilst one person has pampering sessions to overcome post cancer problems.
Why write this blog:
"It's all been very satisfactory, hasn't it?" beamed my cancer doctor, and nearly fell off his chair when I spat back "NO!".
Shortly after he put me on Tamoxifen, I woke up blind in one eye; all he could say was he had never come across this before. The Chaplain at the Royal Marsden Hospital told me this was a recognised, documented side effect, and my vision would return.
Then one morning I woke up with bloody, peeling skin. As my Oncology Nurse peeled off more bits, she said "you do have a problem" but didn't give any advice, neither could the doctor in my '30 second' weekly consultation.
Eventually it cost me money to go to a private doctor and take a course of strong creams. I then wrote to all the major skincare companies who told me they knew all about the problems, could provide products that would help, but British doctors, unlike those in US and Europe, won't tell us what helps as "the NHS must be free at the point of delivery".
All my eminent specialist could offer me was "do you want to come off the drug?"
I worked things out for myself, then was put on Arimidex - supposedly with fewer side effects. Thinking I must be a wimp when these persisted, I asked advice from two senior Oncology Nurses at Royal Marsden and Charing Cross Hospitals - both said side effects can be just as bad.
However, let's be positive! I didn't want to read stories about 'how I suffered with cancer', but wanted to keep on with the drugs as clinical trials prove survival rates are improving dramatically.So I persisted with rep;utable skincare companies and took their advice, and now nurses say "you do have lovely skin". No thanks to them.
Currently I am on Aromasin, made by Pfizer. Side effects just as bad, but I must congratulate them as being more honest than AstraZeneca. Reading notes that came with the tablets, they mention that one possible side effect is carpal tunnel syndrome. I had this, but it wasn't until I phoned up AstraZeneca that they held up their hands and said yes, this is a possible side effect - and they have been shamed into including it under possible side effects.
But for those of you who find doctors just can't help - won't help with side effects, you are not alone. Because it is often our face or body skin that suffers, we feel we mustn't make a fuss over a 'cosmetic' problem, when in reality healthy skin is vitally important, particularly now that you will have lower immune levels.
Drugs zap cells that send cancer around our bodies; but they also affect good cells; those giving you soft skin, nice nails and shining hair. So dealing with side effects is a problem that may last the five years most patients are on drugs.
Because the cancer charities do such marvellous work, our penny-pinching Government leaves post cancer care to cancer centres, Macmillan, etc. Compare our treatment, with that given to heart patients: daily visits from a nurse for the first few days out of hospital, visits from the District Nurse who can supply special mattress to prevent pressure sores if you find it difficult to turn over in bed, and a telephone helpline staffed with nurses who not only know about heart drugs and their side effects, but are prepared to give sensible advice about products we can buy to relieve symptoms. If you feel like writing to your MP, you could find out how heart patients fare in your area, and then ask why cancer patients don't get this support from the NHS.
I DO NOT ADVOCATE 'airy fairy' concepts, or 'special foods', but everything I mention is either obtainable on the NHS, been developed by reputable skin care companies whose products go through stringent testing, (particularly in the USA), or are complimentary therapies tested in reputable surveys (Macmillan, etc.).
WARNING!!
Some of the products I mention contain chemicals - including Parabens. Don't throw up hands in horror - read what Wikipedia has to say, and other reputable sources. Although I want to use products that are as natural as possible, I reckon that the drugs inside my body are so strong, that those used in good skincare products aren't going to add much! And they will have been tested rigorously, especially if sold in the US, where their Food and Drugs Agency (FDA) is vigilant. Recently the Sunday Times Style had an excellent article on the myths behind 'organic and natural' products, saying "in Britain, a product can have only a tiny organic content and be called organic".
So if the product works for you - go for it.
However, if you insist on 'pure/natural' products, I have been trying products from a re-launched firm, Barefoot Botanicals, with great success. They have a Rosa Fina range using Chilean rosa mosqueta oil, the gold standard of these oils, which are excellent.
Others that I have found perform well for most people are La Spieza, Stella McCartney products (but she must do something about the excess packaging) and products from the Organic Phamacy in Chelsea and Kensington, obtainable on the web. Harrods has now opened the very efficient and helpful Farmacia Urban Healing on the Lower Ground Floor - next to the Chemist. There Meenu Bhandari is in charge of a team who really know their stuff, from what supplements can help when undergoing chemo, to skin creams to counter side effects. (020 7225 5954)
BEFORE TRYING ANY TREATMENT OR PRODUCT
1. ask advice of your doctor or nurse
2. Or ask advice of your Pharmacist
3. And try a patch test of any skin product
All products I mention can be bought over the counter in reputable chemists and stores. If provided on the NHS some may not be readily available, so you may have to persist. And if your doctor says "it only costs X over the counter", a Macmillan survey says we each spend on average over £2,000 after cancer, so we need help with buying any product that can mitigate side effects.
Chemicals, Allergies and other nasties
We can ALL be allergic to certain things, so check ingredients carefully; if they seem OK then ask for a sample - or a skin patch test: (rub the product on a small test area, and check 24 hours later to ensure that there hasn't been an allergic reaction).
Many people look for totally natural ingredients but not everyone is 100% clear what this might entail. Catherine Walker, the famous dress designer, formulated her own skincare products after cancer, tried some chemicals, and said she discarded those she didn't like - seems a sensible approach.
Many products include 'better' chemicals to preserve them. 100% pure lotions (the ones Great Grandmother made at home) don't last very long, as they have nothing to preserve them. There are many very good products, but only a few that are approved by the Soil Association, because of difficulties re preserving, etc. so today many reputable and useful products often contain some 'good' chemicals.
And if you really want to be scared look at the chemical formula for Vitamin C!
There is a new kid on the block that has gone the chemical-free route: Barefoot Botanicals. Created by homeopaths to help people suffering from problem skin, and made with botanical extracts, they contain ethically-sourced plant-derived ingredients. I have been trying out their range, and am very impressed.
All the products highlighted in mauve are made by commercial companies, or commercial outlets. They are in business to make a profit, but wouldn't be recommended unless they provided what customers want.
There are signs that that overseas companies are realising the commercial opportunities to sell to cancer patients in Britain, so look out for iS Clinical (approved by Washington Cancer Center) and La Roche Posay (developed in medical spa of La Roche Posay, but now owned by L'Oreal/Vichy.).
iS Clinical is American, and is distributed in Britain by Mentor, the company that supplies breast implants recommended by Cancerbacup iS Clinical was clinically tested at Wastington Cancer Center. Watch this space, but in the meantime you can contact pmorgan@mentormedical.co.uk who will put you in touch with the company that distributes these products: you have to either get them through a doctor or fill out an intensive questionnaire to ensure you are using the right product for your skin condition.
Harrods has a new department, Urban Pharmacy, run by Meenu Bhandari. She is another person who understands our needs, and tells me that they are now stocking La Roche Posay.
I haven't included many contacts, as it is easy to Google and buy products on-line. If you want to phone, and are on BT Option 3 or similar phone deals, the fantastic website www.saynoto0870.com gives you the 'hidden' numbers so you don't pay 0870 premium rates (8p per min/ approx 6p per min goes to company; no wonder the voice says "please hold on, your call is important to us" as they make a lot of money this way).
So here is my 'shopping list' with personal comments.
I would like to thank all the PRs of skincare companies who were incredibly helpful, sent me marvellous things to try, and seemed genuinely keen to help. If something didn't work on me or friends, they were genuinely interested and often came up with another solution or product.
If you want to take advantage of the same research I tapped in to, go to a company's website, and send a query for the attention of the Research Dept. Most companies send back incredibly interesting and helpful replies.And to prove how honest they are, several PRs replied that they would love to help, but knew that their products were only made for normal skins, and not strong enough to counter the drugs. This is why the products I recommend are often fairly expensive, because you have to pay for ingredients that can do the job.
In good stores (John Lewis or Harvey Nichols groups etc.) you will find consultants who work on the marvellous Look Good, Feel Better programme. If it runs at a hospital or cancer centre near you, go for it. You don't have to have been a patient, just be post cancer. www.lookgoodfeelbetter.co.uk. Or www.lookgoodfeelbetter.com outside UK.
And I don't want to scare you, just share some of the practical advice I have been given. so it is highly unlikely your skin will be as bad as mine. Apparently (wouldn't you know it?!) I reacted very badly and instead of producing one or two symptoms, came in with a whole package of them. The good news was all my skincare contacts gave me fantastic help: it's not what you know but who you know! So I am passing the tips and information on. Good luck and I hope they help you too! I would love to know. verite@greenbee.net.
BODYWhen I discovered my skin was a peeling, bloody mess, covered in lesions, I really needed a whole lot of advice and TLC. Peeling off another layer, my Oncology Nurse said "you do have a problem", and that was all the help I had. I needed good efficient help - fast. So I went to my private doctor, who spent over an hour talking me through all my symptoms, and eventually put me on a cortisone cream - which cleared everything up, telling me as soon as the skin was healed to come off the cream and start with a good body cream several times a day.
Quite rightly, none of the companies I mention would send me anything to help until I could produce a letter from my doctor saying my skin was healed. Once I could tolerate creams, etc. Clinique took over - they make a fabulous Deep Comfort Body Butter. Rubbing that all over my skin three times a day eventually bought my horrible peeling skin under control, and now I only use it once a day (unless I go swimming, and then use again). I did think I should try to see if the NHS could contribute to the cost, and was given several products to try, including Cetraben and Oilatum Cream; they are OK, but sadly not nearly as effective, so it was back to Clinique!Once your skin has healed, try a body scrub once a week; the sort with oil in it. It gets rid of rough patches, and feeds your skin- Finders makes one of the best, called Dead Sea Salt Scrub, and it is one of the cheapest at under £10. Another excellent product is Dead Sea Body Scrub with Frankincense oil (£6.99). The same company also makes Black mud mask soap which is excellent for hand washing which dries hands (£3.29). www.deadseabathcare.co.uk.In the bath and shower you need a gentle cleanser, and I use Clarins products; they make several different ones, all very gentle. Then after every bath or shower smooth on Deep Comfort Body butter or one that Meenu showed me from Harrods Urban Pharmacy: A-Derma Cream. This contains Omega 6 and Vitamin B3, and does an excellent job, particularly in the winter.
The 'old faithful' Fenjal is excellent; it has been going for years, and is still as good as when I first tried it. The products range in price from £2.95 up to £10.55 for a large bottle of bath oil. All the products are dermatologically tested and pH balanced, and the Creme Bath really 'oils' the skin if you soak in the bath. Also, you smell with a lovely 'fresh' smell; this is OK for men as well as women, and won't get up the noses of medics who sniff at anything with a hint of 'girlie' smell. Watch out in the bath, as the oil can leave a film on the enamel, but a swish round with the spray soon gets rid of that. If I have any very rough patches I will use a scrub such as Finders on the patches, then rub in Fenjal Creme Bath onto the patch and let it soak in.
If you want lightly perfumed bath gels, cleansers and gentle body lotion, those made by Bronnley are wonderful. Generally those perfumed with flower essesences don't upset skin: it is chemical scents that often do the damage. I particularly like Bronnley's Rose scent, and after Christmas and birthdays it is fun to have a selection to choose from according to my mood that morning - luckily friends know I am a fan! And I have fun choosing a 'scent for today!'.
After a bath or shower, you MUST put a skin cream on your body; try Clinique, or iS Clinical.
iS Clinical's company's products have been tested in Clinical Trials in the US, so the British oncology sector MUST wake up and see what happens in other countries. Their Body Complex is brilliant - they call it 'innovative skincare' and it really is. When you first get problems, as soon as the doctor says you can use products, put it on twice a day - reducing to once a day when your skin feels 'normal'. email pmorgan@mentormedical.co.uk for info how you can order this.
Most people live within a 'Boots' area - their pharmacies are seen in most high streets, and they take skincare seriously. They have developed face and body serums, and both are excellent - particularly the Body Serum, and these can be found in almost all their branches. Currently they are trialling La Roche Posay products in their Kingston, Bristol, Ipswich and Aberdeen main stores - with a view to rolling these out across England.
It is strange that a French clinically-proven product for dry cancer skin, and a US one, iS Clinical, are both being launched in Britain this year (2008). Perhaps at long last the powers-that-be realise that there are a lot of us around, and WE NEED HELP! Boots are training Skin Healthcare assistants to give us help. They emphasise these are not to replace dermatologists - frankly they will probably be far more helpful if friends' comments are anything to go by!
It is really sad - I asked a senior official at one of our top cancer hospitals if they were going to trial either of these products? Answer - "we only recommend clinically-proven products". But iS Clinical has been clinically trialled at Washington Cancer Center and La Roche Posay is part of French health system, and has had 21 Clinical Trials.
"Yes, but we only recommend clinically-proven products".
Translation: we can't be bothered to see what other countries are up to - and are far too busy to worry that we are way down at bottom of European post-cancer survival rates.
Doctors admit that those patients who 'make a fuss' are the ones who survive. By 'making a fuss', we find out what ways of helping and improving our survival rates when doctors are too busy to help.
Don't forget, when you go outside, even in winter it makes sense to use a moisturiser of AT LEAST Factor 15 for everyday (two lots of Factor 8 are still only Factor 8), and a minimum Factor 30 when in the sun. There has been some talk that 30 is the highest possible, but Australian creams are now offering up to Factor 60. Australians are extremely sun conscious; even the macho lifeguards on beaches wear high density sun screen creams. So if they do, you should too!
SunSense Sunsensitive and Ultra creams were developed in Australia, and have high sun protection factors of 40 - 60, but don't sit on your skin like a white chalky barrier. What I like is you put them on BEFORE you go out, then when swimming you lose about 10-20 Factor points each time you are in the water, so you don't have to re-apply each time you swim. I used Sunsense in Sardinia in July, and didn't get even one tiny patch of burn! Incidentally, lying under an umbrella you are vulnerable to reflection of the sun's rays, so keep up protection.
Clarins are another company that takes sun protection very seriously, and make excellent fake tans. They recommend using their exfoliating creams before you apply fake tan for a much more even finish.
I recently went dog sledding in the Alps, and there the wind-chill factor added to skin woes, but Aderma's creams coped. Meenu from Harrods Farmacia had suggested I try their body cream, and it warded off rough sore patches beautifully.
Homeopaths Jonathan Stallick and Hilery Dorrian created Barefoot Botanicals to help people with problem skins, and they have a Rosa Fina body lotion using the Chilean oils.
One 'old' remedy that is making a come-back is Shea Butter. The French company L'Occitane produce Fair Trade Shea Butter from Burkina Faso, buying from a women's co-operative. This is marvellous for the skin, but has to be warmed before using - I keep my tin near the radiator.
SCARS
The nurses told me that whilst mine was 'crusty' I should put oil on twice a day - so I used Barefoot Botanical's Rosa Fina oil, alternating with a rose hip oil from the Organic Pharmacy, and Doctors were very pleased with the way I healed. Once the scar had healed and was just skin, I started using Tamanu Cream from Phytoscience (01506-847040). This is brilliant -six months after my operation, an eight inch long scar has almost faded away, and now looks like a sexy cleavage between my breasts.
EYESWaking one morning with a greyish-yellow film across one eye, I couldn't see a thing out of my right eye - just this yellow film. Thinking the worst, I rushed to my Oncology Doctor. "I've never seen this before - I am sure it isn't anything to worry about". Oh yeah? (Eventually I had the greatest delight in changing this specialist!)Phoning Revd. David Brown, ex-Chaplain at the Royal Marsden Hospital, he told me "yes, a certain percentage do suffer from blindness, but generally it disappears within two months", and it did.
So I went to Michel Guillon to have my eyes checked. He held a senior position at Moorfields Eye Hospital, and has opened a glamorous eye clinic just off Sloane Square. He said it is possible in a very, very few cases to get Tamoxifen poisoning, but after subjecting my eyes to a fascinating range of high-tech tests, this was not my case, and eventually my eye-sight would return. Phew! .
However, what is more likely when on hormonal drugs is that you will suffer from tired, dry eyes (a frequent effect with all drugs), and to help this condition he has developed Systane : a wonderfully soothing lotion get it from the chemist.
'Dry Eye'' is a recognised side effect from drugs; causing soreness, burning, irritation and dryness. You can get another helpful product on the NHS, Celluvisc. This comes in funny little plastic vials with one dose in each, making them easy to carry around in a sterile pack.
If you lose eyebrows and eyelashes, they usually grow back again but in my case the eyelashes are sparse and sandy. Talking to doctors at the French spa of La Roche Posay, famous for their cosmetics that help patients with birthmarks and burns, they gave me a tube of their mascara. One end had a white thickening gel, the other a brown colouring. Used together, I looked into the mirror and film-star eye lashes appeared like magic!You can't buy their products in Britain yet, but now they have been bought by L'Oreal it probably won't be long. In the meantime you can find them in good chemists in France, Spain, Italy and from mail order: O'Connell's Pharmacy, 2 Grafton Street, Dublin 2, Ireland Tel: 00 353 (01) 679 04 67After all the stress, you are bound to have lots of lines under the eyes. Elemis sent me their Pro-Collagen Wrinkle Smooth pen to try out. Cynic that I am, I tested this under one eye and after two weeks discovered, as they say 'lines were visibly reduced'. So I stopped being a cynic and use it under both eyes!
Another good rescue remedy is iS Clinical's eye cream. See above for contact details.
FACEBrillo pad skin arrived within days of starting Tamoxifen and continued when I was put on Arimidex, then Aromasin, and has to be kept rigorously under control. But my face recovered thanks to Clinique and their fantastically helpful medical research team, sending me products from their marvelous Superdefence range to try out. The difference in my skin was unbelievable, and it is now back to almost what it was before. I will mention them again and again, because they CARE, and are always producing products to help.
If you are advised to seek help from a Dermatologist - BEWARE! The ones I have come across, including Professors, should have gone out with dinosaurs. They have no idea what is happening to our skins, and don't want to know. I know - there are some good ones out there and if you have found one who has studied effects of cancer drugs on our skin, please please e-mail me at verite@greenbee.net as I would love to talk to them. The only recourse we have when they humiliate us and say our problems "are age-related" is to ask them, in front of their students if possible, if their attitude might be the reason why Britain has lower survival cancer rates than the rest of Europe - who do worry about skin problems. That usually shuts them up, especially as students are often more forward-thinking. There is one notorious one at Chelsea and Westminster hospital who has reduced me and four friends to tears - telling us our skin conditions, that appeared within a week of starting hormonal drugs, were "age-related".
Far better to ask good skincare companies for advice. I have been astonished at the amount of knowledge and help one can get from them. Some of my favourites, not forgetting Clinique, are:
Sisley, the French company, slightly more expensive, but excellent. As with many French companies, their clients are demanding, and want their creams to work rather than buying because they look pretty! Their products are sensibly packaged, are now in most John Lewis stores, and consultants are very helpful.
I asked them which of their foundation products contained SPF, and their reply was
"We don’t put an SPF into our foundations or tinted moisturizers as if we put a normal SPF in it would, like the SPF in any sun cream product, wear off after approximately 2 hours. Therefore we recommend that our customers use All Day All Year which offers at least 8 hours protection and the normal foundation on top. As the SPF in All Day All Year is encapsulated it is very expensive to produce and therefore would make the foundation very expensive if it was put in to it. Also if you are using All Day All Year you don’t need an extra SPF in the foundation.
This makes sense to me - we MUST protect our faces at all times, even when we go out in the winter; skin cancer is on the rise, and effects of hormonal drugs give us 'brillo pad' skin - so follow their advice, put on their All Day All Year cream under foundation whenever you go out - and realise Frenchwomen expect their doctors to help their skin stay looking good. Lucky people.
Kanebo, the Japanese company, are extremely expensive, but their products are fantastic; probably because the holding company used to own a hospital that specialised in cancer. If you win the lotterygo for their products! Mentioning them to a friend, she tried out their Sensai Premier The Cream and said a jar of this (costs £440 but lasts six months) was cheaper than traipsing up and down Harley Street seeing specialists who hadn't helped. Harrods sells this www.harrods.com/beauty/Kanebo.
Dior - is a 'girlie' thing. I love their pink packaging; not expensive, but elegant and it always gives you a lift! Joking apart, their products are excellent, particularly skincare for the face. They produce several ranges for different ages, so ask the Consultant for advice. I love their serums, and day and night skincare is light but gives lots of 'plumping' up action; you can feel the moisture seeping in. Incidentally, if you like scent their scents are old-fashioned and don't seem to have so many chemicals - unlike modern ones.
SERUMS are the 'almost miracle' product of the 21st century. Estée Lauder calls them "one of the greatest skincare innovations of all time" and for once I don't think this is media-hype. Serums look like nothing, you can't feel them on your face, but use them - and your friends tell you how well you look. If I have strong drugs to take, I will use them twice a day, but otherwise once is enough, at night underneath your night cream. Estée Lauder's Advanced Night Repair has been out for over 25 years, but still going strong, and really does what the label says. I used it twice a day after a major op when I was on about 20 different drugs, and friends thought I had been in hospital for a face lift. Didn't know if I should laugh or scream! Newby Hands, of Harpers Bazaar, is the beauty editor other beauty journalists read, and she says "those who use it look younger than those who don't". At £32 a bottle it is cheaper than most.
If you are flying anywhere, the airports, particularly those belonging to BAA or where the shops are serviced by Nuance, have managed to get fantastic deals from manufacturers to absorb VAT so it is worthwhile stocking up when you fly. If you are going anywhere outside the EU then you get much more off! BAA shopping line 0800 844 844 Press 3.
For younger skins, Avon is very supportive of Breast Cancer Crusade, and has just sent me their Lip Palate: a fun, funky but useful little gadget. Tiny silver case, which opens up to show a mirror, two creamy lipsticks and a brush. You can attach it to a key ring and it doesn't dry your lips.
Clarins is not as expensive as some products, but their face products are excellent; so are their cosmetics, and they don't dry out your skin as some can. Their research chemists are an interesting lot, and their boss, Jacques Courtin-Clarins, is fascinating on the subject of skincare.
Another less expensive brand is Gerovital from Romania. They have been a beauty secret for years, but difficult to export as the Romanians had the know-how, but couldn't afford preservatives and you could only buy a jar at a time, otherwise it went off. Now they are on sale in UK on the internet.
JOINT PAINIf you are on Arimidex, and have joint pains, you are not alone. Give yourself a treat with a long bath soak with a JointSoothers Bath Bomb. This is another of those products of which I was sceptical but I gave some out to the local Macmillan Centre, and everyone that tried them has said they really do work. The makers say lying in a hot bath opens up the pores and allows the Glucosamine to penetrate. They smell wonderful, and I seem to sleep better after a soak with one of these. (0845 009 5158).
Many patients go for herbal medicines, but PLEASE BE CAREFUL just because they say they are 'natural'; some mushrooms can kill, so does deadly nightshade, and many other plants. If in doubt ask your pharmacist's advice, and tell them what other drugs or supplements you are taking.
LYMPHOEDEMA
Often during your operation you will have lymph nodes removed as a precaution, so they can be tested. Sadly, these can't be put back, and as their purpose is to drain fluids this can mean that parts of your body (usually arm or leg) swell up -but often it doesn't happen until years later.
This can be treated - sometimes successfully - but as cancer patients don't complain (much) the NHS in its wisdom has closed down clinics, so it is difficult if not impossible to obtain treatment. I took advice from Lymphoedema Support, who gave me step-by-step instructions which got me superb private treatment, paid for by the NHS! So follow these steps:
1. Ask your GP for help and a referral to a Consultant
2. If the Consultant says treatment will be of benefit, ask if this is available -
3. if not.....Contact your local PCT (you could ask your GP to do this, depending on your relationshiip)
4. If the PCT says this treatment is not available (more than likely) get on to your MP, and also your MEP (Member of European Parliament - these are surprisingly powerful). Get them to write a letter to PCT saying it is your right to have this treatment.
With me, the PCT caved in, and wrote a letter saying they would fund treatment "in an NHS hospital". This is catch 22 as they have probably closed down the clinics anyway.
Your local cancer hospital might have a clinic, but generally they will say it is for In-patients only. As Lymphoedema usually doesn't turn up until you have long left hospital, they know they are relatively safe and you won't qualify.
5. So go back to your PCT, send a letter to say as it isn't available at the NHS hospital/s, you want private treatment. Send a copy to your MP and MEP, and make sure this is noted on your letter to the PCT.
In my case they agreed to fund treatment at a private hospital. Most private hospitals with physio departments will offer this, but make sure the physio has been trained in the Vodder method - the best (as far as I know). Currently I had two courses funded - almost all the pain has gone and I get limited swelling - and am gearing up to fight for a last course to clear it up completely.
If you feel like it, the Klinic Bad Sulza (see under Spas - Germany) offers excellent treatment, but as you need to take an 18-22 day course, you must be able to pay for that long a stay in this private clinic (around £99 per day all-in).
Support stockings / tights
You may be given support tights (if you go privately) or have to pay for these yourself - and they can be very expensive. Ask your Physio if you can wear Elbeo tights instead.
Elbeo make support hosiery with a compression factor from 6 - 12. They don't look like support tights at all, and I wear them all the time, They they come in really nice colours; not that awful institutional 'old lady' beige! Cafe Creme is my favourite. They also come in different deniers, from 15 to 40, so you can wear the appropriate thickness for the season. You can find them in good departments stores: Debenhams, John Lewis, etc.
MASSAGE Research has definitely proven that massage can help the body eliminate toxins that accumulate from drugs, which one doctor described as a daily mini-chemo. If you suffer from fatigue, try a monthly massage to eliminate this, as often it is the build-up from the toxins that can be a major cause of fatigue.Britain's National Health Service is piloting massage, reflexology, manicures etc. in certain hospitals. Ask around, and you can find all kinds of help available, either at your cancer hospital, or with a Macmillan, Maggie or Haven Centre. If you find a centre that offers these, you are generally offered six free treatments and then you pay.
If these treatments are available at a different hospital to yours, ask your doctor's advice about sliding around the system to get on their programme. Sadly, you have to learn to 'work the system' for yourself, and it is no use being wimpish - just demand what others are getting.
If you are lucky enough to be able to take advantage of European cancer care, particularly in France or Germany, massage is often provided on their health service whilst you are on drugs, and this could well be one major reason why their survival rates are better than ours.
The German Krebsinformationsdienst (Cancer Information Service) says
Patients can obtain massage if it is approved by their doctor, also on a regular basis, and if their health insurance covers it, or if they pay for it themselves.The decision if a patient is entitled to massages is made by the attending physician on the basis of medical necessity. He also determines how many massages for an individual patient are medically necessary, and over what period of time.
In France they seem to have the same sensible approach, and looking at their cancer care you can understand why celebs like Kylie Minogue and Marianne Faithfull, although living near UK cancer centres, decided to be treated in France.
Once you have to pay for massages, companies like Elemis (famous for the way their trained their therapists) have franchises all over Britain; if you are visiting London take time for a trip to their Day Spa, just off Bond Street, where they offer the Rolls Royce of treatments; otherwise go on their website or phone for nearest spa. They also make products that help with extra dry skin and I love their body scrub, which gets rid of scaly skin patches. www.elemis.com 01278-727830.
Aveda is another company that trains top therapists for spas around Britain. Typical of their franchise spas is Mar Hall, in Glasgow, which has some superb treatments. www.aveda.com.
If you have a beauty training school near you with a good reputation, they may offer free aromatherapy massage. Downside is you are treated in a class laid out like slabs of meat in rows, but it is free (although a small tip is accepted gratefully by student). Before you go, DO ASK ADVICE of the local Authority that regulate the school, and also your Oncology specialist.
HANDS, FEET AND NAILS Kanebo's hand cream is about £55 for a tube, but fantastic at getting rid of hang nails, dry skin etc. I use it at night, with the treatment gloves they supply, and this does work. Cancer drugs often cause the top layer of nails to flake off; this can be painful as nails catch in anything. The Royal Marsden Hospital has a manicurist, Francesca Mannning, who is very helpful and supportive, and made me realise that many others suffer - usually in silence. One thing Francesca recommended was glass nail files (developed by NailTek in the States, where cancer patients receive far more support on the skincare side), and Elegant Touch now sell these files in UK (020 8573 9907 for stockists). Called Crystal Glass Files, they are so good I have one with me by the bed, in my handbag and on my desk - all places where the horrid little hangnails will catch. They are also coming into shops, so look out for them at chemists.
For some people, feeding the nails with a supplement can work wonders, and VegEPA make capsules containing Omega-3, Omega-6 and Evening Primrose Oil, but they warn you MUST check with your doctor in case the capsules have any effect on drugs you might already be on. They warn not to expect miracles, but if impatient you can double the dose for a short while (which I did) and my nails are less flaky. Made by igennus, www.vegepa.com.
The Australian product, Manicare, is now coming into British shops, again with bases and cover coats. At first I turned up my nose at their Nail Mask but it really does work, feeding the nails deep down.
You may find that due to a low immune system, you develop a fungal infection under your nails. SkinSure Plus is recommended for this; put a large drop into the palm of your hand, rub palms together then scrape nails across the palms so the lotion gets under the nails. 0800 107 1053.
However, my fungal infection was so gross that the only thing that finally worked was Loceryl. This costs around £40 a tiny bottle, but thanks to Dr. Nerys Roberts at my local hospital, I managed to get this on the NHS.
Feet also suffer; mine were cracked and dry, but Clinique have a Water Treatment cream which is wonderful and my NHS podiatrist wanted to know what I used! She was also impressed with the lovely citrus-smelling Foot Balm made by Barefoot Botanicals.
But I have found that Flexitol (on NHS prescription) is also very good. For some reason it is only included on one NHS list, but just tell doctors to keep looking: they'll find it eventually.
SUN PROTECTIONPatients must avoid sun, and some of the best products (and cancer care) comes from Australia. SunSense (mentioned above) makes fantastic products (www.sunsense.co.uk if you cant find a stockist) with up to SPF 60 that blocks both UVA and UVB rays. What I like is when you go in the water, this just reduces the SPF factor; you don't have to reapply the cream every time you come out. I had a very sun-filled holiday in Sardinia and did not burn once - just developed a very light but healthy-looking tan. La Prairie's Soleil Suisse SUN products with one of the highest SPF factors (50) are also popular, and you can save money by buying in Duty Free outlets. Ironically Coco Chanel made suntans fashionable; today suspected for inducing skin cancer. Chanel was the IT girl of her generation (1920s); lover of the Duke of Westminster (one of world's richest men), and whatever she did was news. Until her time, all women wanted the pale, elegant look; only peasants got sunburn. But Chanel changed that, and developed a whole new sporty look when she accidentally got burned in the sun one day when holidaying in the South of France; all the fashionistas wanted the same suntan look; on which she capitalized. Her company, Chanel are now into hydration and protection with their cosmetics line, realising prevention is better than cure.
Don't forget that you will also need to protect hands when you wash them; take a good soap into work with you, and when you take a bath use products such as Clarins who make excellent foam bath washes. Use in the shower or bath, and they don' dry out your skin. However, you still have to use a body cream afterwards. They also make excellent exfoliants, and after your skin heals you will need to use these on your face and body at least once a week. Our skin has millions of cells, which constantly die and shed (that is what police dogs search for when trailing criminals). However, skin doesn't shed everything, so nature needs a helping hand with exfoliants.
For years the French have had the benefit of excellent skincare for medical conditions on their health service and now the pioneers, La Roche-Posay products, are made under licence by L'Oreal skincare. So far we can't buy these in UK, but you can get products in all good French pharmacies, on the web and in Eire - and Boots and Harrods are looking at stocking them.
Recently La Roche-Posay (LRP) have come out with high factor Sun protection product, Anthelios
LRP has possibly chosen to launch in Eire as Skin Cancer is one of their most common cancers, responsible for 1 in 4 new cancers in Ireland every year. Possibly this is because it is more likely to affect fair-skinned people (2 out of 3 of Irish population), but don't think you are immune if you have a dark skin, as skin cancer can attack any skin colour.
When deciding on what protection you need, you may be confused by talk of UVA and UVB rays. La Roche Posay says:
UV rays come in two forms UVA and UVB.
UVA rays are 95% of the UV radiation that reaches the earth; responsible for ageing of skin and can cause skin cancer.
UVB rays are more dangerous than UVA rays, even though they only account for about 5% of radiation that reaches earth. They burn the skin and can cause skin cancer and eye damage. Anthelios range offers greater protection of less than or equal to 2.5.
All sunscreens with an SPF will filter out some of the rays, but you need overall protection from both UVA and UVB rays, and the European Commission recommends a ration between UVB and UVA protection of less than or equal to 3.
EXERCISE
New Zealander Matt Hickey is pioneering a revolutionary Post Cancer Recovery programme being looked at by NICE, and I can't wait for the day when it is rolled out at hospitals across the UK. Currently it is offered at Parkside private Hospital in Wimbledon, London, and other private hospitals in the UK. Matt is one of the few medical professionals who looks at you holistically, and gives sensible advice straight from the shoulder - but with a lot of TLC and common sense.
Using a computer to check what needs exercising, the Cancer Recovery Programme highlights what to do to help counter fatigue. This is then translated into simple exercises you can do at home, in the swimming pool or even take to your local NHS hospital physio dept. and get them to devise a programme for you. www.mycrp.co.uk. Has details of other centres where the programme is available.
Swimming is one of the best exercises, and both David Lloyd and Esporta have centres all round Britain, where there are lots of useful programmes on offer. I love Aquarobics; this is offered at most David Lloyd and Esporta clubs, so ask if this is available locally and go and have fun!
I tried out the David Lloyd Club on top of Fulham Broadway; spacious, welcoming, with a 20 metre pool heated between 29 - 31 degrees. Here Katrina Watson gives fun Aquarobics sessions, which really get one moving, but nothing is too difficult or strenous. Katrina knows her stuff, and after class quietly told me she noticed I had trouble raising my arms - when I explained why she gave me helpful and targeted advice. Behind me was another member, asking for advice - which sounded as it it were eminently sensible. For anyone disabled there is a lift up to pool, special changing room beside pool and a chair hoist. And a very 'buzzy' club coffee bar with squishy sofas.
David Lloyd Clubs are to be found all over Britain, and I am told that some of them have special membership deals for pregnant mums. When I tried to contact the head office to find out if they would do the same deal for us - their head office has one of those switchoards that ask you to 'press button here' and then, when you have given them a lot of money because it has taken you so long, they just cut you off. So best thing is to look on www.davidlloydleisure.co.uk and contact the local club. Tom Lavery in my local club is very helpful - but even he can't get through to head office!
Make sure the temperature of any indoor pool is around 30 degrees. Doctors will explain why (too cold, and you don't get benefits). Some local authority pools are down to 27 degrees, and even private clubs have been saving money this way. Ask a specialist to explain what happens to muscles if they are too cold - but what shook me is you don't lose weight if your are too cold in the water. All that effort for nothing!
ENFINIt is just common sense; as Mary Poppins would say; a spoonful of sugar helps the medicine go down, but then I often think doctors would never agree to her home-spun advice, particularly when it comes to post cancer treatment. If you want more details of products I mention, do e-mail me on verite@greenbee.net
But whatever you do - spoil yourself! Put yourself in the hands of a consultant for a good skincare company such as Clinique, and enjoy testing samples. Phone first to make an appointment - ask for anyone who takes part in the Look Good, Feel Better sessions, or explain that you are having cancer treatment and want to discuss what can help, and you will be surprised how helpful people are.
HAVE FUN!
Verite Reily Collins ©
Useful Contacts
Breast Cancer Care 0808 800 600 www.breastcancercare.org.ukCancer BACUP 0808 800 1234 www.cancerbacup.org.ukCancer Research UK 020 7269 3132 www.cancerresearchuk.orgLa Roche Posay spa and treatment centre www.la-roche-posay.infoLook Good, Feel Better www.lookgoodfeelbetter.co.uk. Or www.lookgoodfeelbetter.com outside UK.Lymphoma Assn. 0808 808 5555 www.lymphoma.org.ukMacmillan Cancerline 0808 808 2020 www.macmillan.org.ukPAC (positive free counselling service) 01373-455255
Cancer Centres
Breast Cancer Haven (Fulham and Hereford) www.breastcancerhaven.org.uk Cancer Resource Centre (Battersea) www.cancer-resource-centre.org.ukMacmillan www.macmillan.org.ukMaggie Centres (especially in Scotland) www.maggiescentres.orgRoyal Marsden Hospital (Chelsea and Sutton) www.royalmarsden.org
MORE INFORMATION ON SURVEYS, EXERCISE, FINANCIAL HELP, HOLIDAYS, MASSAGE, ETC., AND FINDING HELP
Physicians Guide to Clinique Products: this booklet lists ingredients in their products and is invaluable for nurses and doctors who need more info on what's in product. 01207-271209
SURVEYS Recent findings from reputable surveys into problems of cancer drug side effects say
95% will experience problems
50% come off drugs because of side effects
£2,000+ is average cost per patient post cancer on treatments, etc.
So you are not alone, but it can be difficult and lonely trying to find help. Biggest cheer of day at a recent cancer conference at the Royal Marsden Hospital came from patients, when a speaker said "doctors don't listen to patients". It was easy to see the Medical delegates - they were all scowling.
The very, very good news is that these drugs mean we have a far better chance of recovering. And - there are people and companies out there ready to offer wonderful treatments, from relaxing aromatherapy massages to skincare, all proven to make one feel better and help overcome side effects.
FINANCIAL HELPIt can come as an awful shock when you are told you have to come every day for treatment, for several weeks then you add up what the hospital car park is going to cost!
Macmillan are working on this, and thanks to them some hospitals will now waive charges. Ask.
If you live in London you can get the Congestion Charges refunded.
Or the Government may pay, if you are in receipt of benefits. Ask Macmillan or the Cancer Resource Centre for help with claiming this, or there may be a local scheme that covers you. Phone them on 0800 500 800. They are nice helpful people!
FOR COMPANIES, SPAS AND HOTELS WHO WANT TO HELP CANCER PATIENTS
There are Consultants who advise on offering suitable treatments for spas and hotels, e.g. Nicole da Canha, (offering massage at Macmillan centres and at the pioneer Breast Cancer Haven Clinic). She also advises companies on setting up appropriate treatments. drnicoledc@hotmail.com. Or contact me, as I have advised some companies. verite@greenbee.net
Nicole says the Claire Maxwell Hudson School of Massage has a special cancer massage course (www.cmhmassage.co.uk), and others are Middlesex School of Complementary Medicine and Bristol Cancer Help.
More Info:
For fantastic therapies and massages The Sanctuary in London is worth a visit - but it is women only!
Research into Aromatherapy and Massage. Princess Alice Hospice, North Surrey PCT, Royal Marsden etc. Originally published in Palliative Medicine 2004 Issue 18 p87-92
GERMAN HEALTH INSURANCEThe health insurance system in Germany is divided into 1. Approx 300 compulsory health insurance funds for the majority of the people 2. Approx 40 private health insurance companies for higher income and business people. Ad 1: Physiotherapy and medical treatment are covered within primary health care on the basis of contracts between the Association of CHI physicians and the health insurance funds which also determine according to strict criteria the scope of service that is covered. Ad 2: Policies and regulations concerning the service of the different providers vary widely. The scope of their service depends on the individual contract between the health insurance company and the patient.
You can find more information about European health systems on : http://www.euro.who.int/observatory/Studies/20020522_14
HOLIDAYSOne thing every Consultant, Doctor and Nurse seems agreed on is take a holiday after treatment. But they don't tell you
Can you can fly?
Can you go out in the sun?
What about diet?
And biggest fear of all 'what happens if I get ill again?' This probably won't happen, but you are emotionally low and afraid of the slightest sneeze.
Where can I find reasonably-priced travel insurance for post cancer patients?
YORKSHIRE
There is a wonderful spa at Linthwaite, near Huddersfield called Titanic. Don't be put off by the name (it was built the same year as the ship, when everything was being called after the liner). The Spa is tremendously eco-friendly, bringing water up from a bore-hole, using salt regulated water in the pool (and no chlorine), and they offer the Elemis and Decleor treatments that are proven to do so much good to cancer skins. The therapists are excellent, have all undergone intensive training and a treatment is not only a treat - but also very good for you and your body.
The pool is enormous, has a poolside lift, and underwater music. There are Aqua Aerobics classes held here, which is one of the gentlest but most effective exercise regimes you can take.
ABROAD
Germany provides massages as part of their health service, as does France, and at medical spas you see queues of patients clutching their medical forms, all having fantastic free sessions which would cost us a fortune in Britain.You can take advantage of their system; you will have to pay, but visiting a properly approved medical spa will still be far cheaper than going to a glitzy resort. At a medical spa there will be genuine doctors in charge, rather than therapists who waft around in white coats (the local tourist board will tell you which are approved). Treatments will be tailored to your type of cancer, you will be under the care of a doctor who actually spends time with you, and often speaks excellent English and the family can take advantage of the swimming pool, treatments and kid's facilities. You may not see them from morning till night.
At Aix-les-Bains, whilst watching coach loads of OAPs arriving for their monthly treatments, I realised that I could take advantage of their system. So here is my mini-guide to having fun at Spas. This is very much tailored towards what I experienced, and what worked for me (I had breast cancer) but generally the medical spa websites will tell you which cancers they specialise in.
TravellingIf you are worried about flying, or told that you can't fly, thanks to Eurostar in conjunction with Rail Europe, train travel is getting back to the days of glamour - or almost! There are often seamless changes at Lille Europe station for onward trains to Switzerland, Germany, France, etc. Now that St. Pancras Station is opened it will be even easier to take a train from the Midlands and North to catch Eurostar, and times are very fast. Through trains run from London to many destinations across France, but if you have to change, try and get Rail Europe (Eurostar's European rail partner) to organize the change at Lille. Here you will only have to change platforms, rather than go across Paris to another station. If you have to change in Paris, don't even think of taking the Metro (no lifts or escalators) but taxis are cheaper than you might expect. www.eurostar.com. www.raileurope.co.uk.
European Rail is an excellent company that can tailor-make a train and hotel package for you, and their Managing Director takes a personal interest in customers. www.europeanrail.com
In a wheelchair, facilities are generally excellent. Although Eurostar say assistance can be arranged on the day by calling at the Assistance Desks on station concourses, I would suggest it is better to state your disability at the time of booking, on 08705 186 186. Vegetarian meal requests should be made 24 hours in advance. Special dietary requests for low salt, gluten-free, diabetic and other meals must be made at least 48 hours before booking via the Eurostar Contact Centre (08705 186 186).
FRANCEAix-les-Bains has a marvelous spa, are well-used to treating post cancer patients, and they make a speciality of care for patients with mouth cancers. Their specially-developed little machines (a bit like dentists'drills) direct streams of warm, healing water directly at the sites, and you see patients having treatment with smiles on their faces. Their massages are excellent, and give you back your bounce. This spa town has lots for the family, including an evening dinner cruise on the lake where you may see beavers (I saw two). If you drive there, DO use the town's car park. The walls have the most wonderful collection of paintings: surreal but fun. Brides-les-Bains (easily reachable via any Eurostar/Rail Europe service to the French Alps) is a lovely old Thermal spa that has been sympathetically modernised. Instead of visitors walking sedately around the gardens, today they go ski-ing in the winter, and indulge in the spa in summer. The Grand Hotel des Termes is one of the grand old hotels, where the incredibly rich Duke of Westminster used to deposit his wife for the summer, then hare across to the opposite corner of France to Biarritz and spend time there with his mistress, Coco Chanel. The hotel was totally renovated by the French for the Albertville Olympics to house their skating stars: expected to scoop the medals. Unfortunately they didn't: I wonder if it was because they were enjoying themselves too much in the hotel?The spa is dedicated to helping you lose weight along with meals. What looks like incredibly high menu prices are actually calorie counts. And you eat dreamy food that does you good! Then go back for fantastic treatments that make you feel wonderful, but help the body get rid of toxins from drugs. www.brides-les-bains.com
La Roche Posay in the Poitou-Charente (opposite side of France) is less expensive, but again has lots for the family. Suites in the hotel are not expensive, but give a touch of Hollywood glamour to a family holiday. Here I had a 'massage under water' where you lie on a waterproof-covered table, with jets of water playing over your body whilst the therapist massages you. Afterwards my skin was incredibly soft (and I felt wonderful). Apparently the minerals in the water help the softening process and are excellent for cancer-stressed skin. The spa specialises in treating skin problems: big ones like birth marks, third-degree burns, etc. and has devised an incredible array of stunning cosmetics for disguise and glamour.
GERMANYClinic Bad Sulza, near Leipzig, is forging links with British cancer treatment centres, and even had lectures from a specialist British Therapist on differences treating British patients. Great hilarity as main difference is Germans are so used to massages that they take off clothes automatically – we have to be persuaded even to take our socks off. But therapists have seen it all before, and you soon relax under their skillful treatments.Ute, who runs the beauty spa, offers excellent treatments specially aimed at post cancer patients: manicures, facials (with fantastic results) and other treatments to induce moisture into dry skins. Air Berlin and Ryanair fly there (Air Berlin definitely wins hands over with their excellent treatment of anyone with the slightest disability), but you can take a train; possibly overnighting in Cologne, or flying to Frankfurt and connecting up to the fantastic German Rail system from the Airport (2 ½ hrs to Weimar near Bad Sulza). All treatments, including supervision by doctor, accommodation with ensuite bathroom and three meals a day cost from £99. Partners and family can go there too and take advantage of the massive thermal water pools. Just don't ask German fellow guests how much they are paying: most are getting their stay free on the German health service. Makes you sick when you realise that they pay about the same overall as we do in taxes for the NHS, yet maybe because their hospitals aren't burdened by massive administration costs, benefits go to the patient. As far as I could see there are only a small administration staff at the Klinik, but five full-time medically-qualified doctors and about 30 medical staff for up to 500 patients!
They also have a beauty spa, where Ute and her team work with Jena University Hospital (world-famous for cancer treatment) to provide treatments for cancer patients. Their facial really gives you back a beautiful skin! www.toskanaworld.net go to Medical Spa Bad Sulza tab at top, then scroll down to blue section on right and click on therapies.
ITALY Sardinia has several well-managed Thalassotherapy treatment centres. These treatments are based on minerals found in sea-water, so have to take place near the sea (don't believe mid-country spas that say they bring tankers of water in - it doesn't work). Just Sardinia is one of the most efficient and caring tour operators I have come across; they know their Sardinia, and arrange everything beautifully. I stayed at the Hotel Capo d'Orso (you need a car if you stay here) where their Thalassotherapy centre became my haven from the world. www.justsardinia.co.uk.
SWITZERLANDIf I win the lottery I would head straight for Clinique La Prairie, just outside Geneva. Haunt of stars, politicians and anyone with several thousand pounds to spend on getting into tip top health mode it has the most fantastic treatments. The Director, Dr. Walli, has a wonderful sense of humour, the food is low calorie and delicious, the treatments sooth away all aches and pains, and quietly they do a tremendous amount of good for underprivileged children, paid for by the film stars having plastic surgery.If anyone comes from Glasgow, the Clinics sense of humour was evident when I met their head plastic surgeon, who proudly said he had done his training at Glasgow general A & E hospital. He remembered Saturday night brawls with fondness the excellent training gained by stitching up torn noses and lacerated ears.
CAN I HELP?I am just an ordinary inquisitive journalist, but writing as European Editor of Onboard Services Magazine (an American magazine that went to the trade supplying ships, airlines, duty free shops at airports, etc) I had to know about skincare products as they are one of the biggest sellers, and this meant being in contact with companies all over the world making advanced skincare products: in USA, Japan, Australia, Europe, even Romania. Wholesale buyers needed to know what were good products, and what advances were being made, particularly as customers at these outlets tend to spend more money, provided the products perform, and ask more informed questions.
So I already knew something about the products, and also about how dermatologists often decry them as being "pretty packaging". Sadly there are only around 300 registered dermatologists in Britain, and with a minority their training happened a long time ago. So when an eminent dermatology Professor examined my skin and told me the bloody peeling was happening "because of your age". I knew he was talking rubbish and challenged his views. He got his own back on me though; telling me to go next door and put on my clothes, and when I returned it was to find he had left for lunch!
However, there are many medical professionals who are doing a tremendous amount to help cancer patients. I had long talks with Ute, who runs the Beauty clinic at Klinic Bad Sulza in Germany, and works with the cancer unit of the University of Jena. She has devised treatments that are excellent for restoring cancer-fatigued skin. The same in France, where La Roche Posey takes skincare very seriously (being French), and others.And many Oncology Nurses in Britain are very interested, and want to know more, but as the head of NICE, Sir Michael Rawlence has said, the drug companies are having a big influence on the NHS. You can see their thinking: they have spent millions in researching new drugs to combat cancer, and therefore don't want to highlight adverse side effects.But statistics from the Macmillan survey saying 50% of patients are coming off the drugs (AstraZeneca admitted in a Press Conference recently that 30% come off), drug companies are going to have to consider helping patients keep on the drugs, if only to assure future profits. They will have to allocate a proportion of their massive profits on helping find products to mitigate these effects. Being an awkward sort of person, I refused to either come off the drugs, or put up with side effects, and started asking questions. If you feel you are on the same wavelength and running out of doctor goodwill, statistics prove awkward cusses liked us have a better chance of survival! Eventually, I was asked to sit on the King's College Consumer Research Panel Evaluation Group for post cancer care.
I have an advantage: journalists have an invaluable 'bible' on our desks - Hollis PR Annual. Look up a skincare company, and there is their press officer listed. Skincare PRs fell over themselves to be helpful, saying their companies have been trying for years to get doctors to listen to their research chemists, working on products to help our skin, particularly showing drug side effects.As soon as I phoned to say "I am on Tamoxifen - do any of your research team know anything about its effects?" I was overwhelmed by solid, reliable information, far more in-depth and helpful than any I could obtain from the leaflets we are handed in hospital (these are often funded by drug companies so that's why side effects are glossed over. Sadly, these are written by doctors, and I am sure reading them you can tell if the doctor has experienced your cancer - probably not. Cynically I think doctors don't listen because skincare companies aren't spending millions on entertaining, like drugs companies. (Some of the best lunches I have eaten have been hosted by drugs companies). When I asked doctors and oncology nurses if they thought the products would be OK - usually they were dismissive and didn't want to know, hiding behind the statement "Oh! That is a commercial company - we can't recommend anything commercial".
And drug companies aren't commercial? !!!!!!
WHILST I WAS GOING THROUGH ALL THE SIDE EFFECTS FROM TAMOXIFEN (ONE OF MOST USED DRUGS), I WAS TREMENDOUSLY LUCKY. LIVING NEAR THE ROYAL MARSDEN HOSPITAL, I KNEW THEIR EX-CHAPLAIN, REVD. DAVID BROWN. HE HAD BEEN ON THE ORIGINAL ETHICAL COMMITTEE THAT APPROVED TAMOXIFEN, AND WHENEVER I PRODUCED A SYMPTOM - I WOULD PHONE DAVID. HE WOULD LOOK UP IN HIS NOTES, AND BACK CAME THE ANSWER "YES, X% WILL SUFFER FROM THAT, BUT IT DISAPPEARS......
So thanks to all those people out there who are spending time and money in researching products that can help, especially the skincare companies that often get such a bad press, but I found incredibly helpful.
If you want more details of products I mention, do e-mail me on verite@greenbee.net
HOMEOPATHY
Many NHS Doctor's surgeries are able to offer homeopathy, or you can go to well-qualified and helpful practictioners such as Matt Pepper, who works in London.
He has consulting rooms in Farmacia Urban Healing department, downstairs at Harrods, where you sit, sipping a gorgeous health food drink whilst he takes time to explain why you have problems, and what solutions he advises. Very different from the 'ten minuite consultations' on NHS. Our white cells are depleted by cancer; shock, stress and grief lowers and kills off cells, and can wipe out our immune system. So it is no wonder we feel depleted of energy, and everything takes twice as long.
During chemo, homeopathic medicine can often help with side effects during treatment, and Matt works with each patient to find the remedy, especially for side effects, which he says can be different for everyone. With hospital treatment, you have probably found that oncologists are often so busy, they tend to prescribe the same treatment for almost everyone, regardless of what their actual 'cocktail' of symptoms consists of.
"Within a week you should notice if the homeopathic remedy is doing anything", says Matt. And is quite prepared to try and try again until the right treatment is found for you. "See it like a plant", he says, and he will nurture the body "and work together to put people back in the driving seat". homeopath@mattpepper.com.
TREATS AND PRESENTS
OK - we all know chocolate is fattening - BUT - did you know Bendicks Bittermints (those lovely thick satisfying circles) are only 80 calories? If you pig out and eat three, that is what you can be allowed on most diets for snacks.
If friends want to give you a present, head them towards the www.Kuati.com website. Kuati was started by someone who wanted nice gifts when in hospital, so now friends can go on the website, choose what you would like - and it is delivered beautifully wrapped to your home or hospital. There is a delivery charge, but this is waived for orders over £100.
BUT WHATEVER YOU DO - HAVE FUN!
Verite Reily Collins