Health News

You may feel that this could not apply to you because you do not regard cancer as a ‘disability’. For the purpose of this benefit, however, ‘disability’ is defined as requiring help with personal care or with mobility, or both. Disability Living Allowance is tax-free and is not affected by either your National Insurance contributions or your savings. It is generally for people under 65.

There are two quite distinct elements to the benefit. You may

qualify for the ‘personal care’ element if you need help with, for example, washing, dressing and using the toilet, or preparing a cooked meal. The ‘mobility’ element may apply if you are unable or find it difficult to walk, or if you need someone with you when you walk to ensure your safety.

Under normal circumstances, you would not qualify for Disability Living Allowance until you have needed help for at least three months. There are however special rules for people with a terminal illness who may not live for longer than six months and you may qualify for your benefit immediately. It is of course accepted that even when people are not expected to recover, they may well live longer than six months. This does not affect your benefit – and does not mean that it will be withdrawn after six months.

The two elements of the benefit are considered separately, and are paid at different rates. There are three rates for the care element, and two for the mobility element. It is not necessary to claim for both elements in order to qualify – you can claim one or the other.

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Confronting the concept of dying is a separate process to confronting the reality of your cancer. If your doctor has told you that your prognosis is not good or has worsened, then you will need to come to terms with that fact in the way that is best for you and your loved ones. It is very hard to accept, let alone to come to terms with, and it can be tempting to refuse to face it by choosing not to talk about it, even though it may be constantly on your mind. If you are continuing to have treatment, then hope for a ‘miracle cure’ can easily remain stronger in your mind than the likely reality that you are not going to recover – it is a kind of coping mechanism.

It is rare for a person to completely refuse to acknowledge approaching death, when this becomes inevitable – although it can be complicated by the fact that so many variables are in play that no doctor can predict how long a patient will live. Most people do reach some form of acceptance, although this does not necessarily entail frequent and long discussion of the process. You may be inclined not to talk about it and try to put it out of your mind. On the other hand, you might be the sort of person for whom some discussion is important. Some people choose to go a stage further, and express their wishes and feelings about dying in a Living Will. This is a document which expresses your wishes for your medical and nursing care as you approach death. It may be that this is not strictly necessary in the sense that you know you will be well cared for. It can nevertheless help by giving a sense of control over your treatment right up to your death and help your family by allowing them to be sure that they are doing just as you would wish.

When Neil’s prognosis suddenly worsened considerably, we prepared three documents together:

a Living Will which set out his wishes regarding his medical care;

a ‘Death Plan’ which expressed his wishes on more general

matters such as whether he would like to continue having visitors as his death approached, the music he would like played and other issues which impinged on the environment and atmosphere in which he died; • Advance Funeral Wishes which set out detailed instructions for his funeral and burial.

This was an emotional but in some ways comforting exercise. Once the documents were prepared (and after we had sorted out other practicalities) we felt freer to concentrate our energies on Neil’s continuing treatment and our time together in the knowledge that these logistical issues were taken care of. It also allowed Neil the reassurance that he had expressed his wishes and that even if he became unable to communicate his thoughts adequately, they would be adhered to – which, of course, they were. The knowledge that we had discussed these incredibly important issues together was tremendously helpful to me, as I could feel at each stage that I was ‘doing the right thing’ – vital both at the time and in retrospect.

A good source of further information and pro-forma documents which you can tailor to your own needs is The New Natural Death Handbook produced by The Natural Death Centre. The Centre also produces a set of forms which includes a Living Will. The book What You Really Need to Know About Cancer by Dr Robert Buckman also includes a useful pro-forma Living Will, with additional clauses covering, for example, legal liability.

Some people make a Living Will while in perfectly good health to cover unforeseen eventualities such as severe and lasting brain damage or an advanced degenerative disease. The point of a Living Will is to make specific statements about the type of care and medical intervention you wish to receive and, equally important, not to receive, if you are close to dying in case it becomes difficult or impossible to make decisions yourself. If you have cancer and are not expected to recover, the circumstances are more specific, and your Living Will can reflect this. There has been much ethical debate about patients’ ‘refusal’ of treatment (although this is not necessarily what a Living Will expresses), and it is important that you talk about your Living Will to your GP and the doctors treating you to ensure that they accept and will act in accordance with your wishes. In practice, your wishes are likely to reflect the treatment you would in any case have received, but your sense of control will be enhanced if you make these statements yourself.

It is a good idea to use a pro-forma for your Living Will, and adapt it as necessary – although there is nothing to stop you drafting your own version. Please bear in mind that the points mentioned below do not cover all circumstances or illnesses and are purely an outline of some of the issues you might wish to consider, such as:

your views on medical intervention such as blood transfusions, artificial ventilation or antibiotics;

whether you wish distressing symptoms to be controlled by medications such as painkillers, even though these may shorten life;

your views about physical comfort, and artificial feeding and hydration (as opposed simply to maintaining comfort by having mouth and lips moistened);

whether you wish to die at home, if this is possible, or at the hospital where you have been treated or at a hospice;

any care you specifically refuse, such as transfer to a ‘high tech’ intensive care facility;

who is to be responsible for taking decisions on your behalf, should this be necessary (wife/partner/parent/son/daughter, etc).

A Death Plan (also available as a pro-forma from The Natural Death Centre) covers more general points such as:

(reiterate) where you prefer to be cared for;

the name of your next of kin and whether you have made a Living Will;

whether you would like to continue having visitors when close to death;

whether you wish it made clear to visitors that you are dying;

if you would like your wife/partner to sleep in the same bed/room as you;

any loved ones you would particularly like to be involved in your care;

your religious/spiritual philosophy (if any) and how this is to be applied to your dying;

the ‘ministrations’ you might appreciate – music, hand held, prayers, massage, reading, etc;

who you would like with you at the moment of your death;

(reiterate) feelings about pain control.

There may be other specific points you wish to include – the document is an expression of your personal wishes.

Your Living Will and Death Plan should be signed and witnessed, and copies given to those responsible for your care (GP, hospital doctor, hospice doctor, etc).

During Neil’s last days, I felt thankful that he had wanted to make his views and wishes clear. Through the sense of unreality it gave us something to focus on, to ensure that the music he requested was playing, that the comforts he requested were available, the people he wanted close were there. As he gradually became less conscious, I consulted both his Living Will and Death Plan several more times, to make sure I had missed nothing. The hospice staff were also hugely obliging, and made sure they too were familiar with their contents, volunteering the loan of a portable CD player, for example, so that we could play music easily. It made a big difference not to be constantly wondering whether we were doing as Neil would have wanted – because he had told us.

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Telling close family and friends

There is also no easy way to tell the people close to you that you have cancer, and you may want to ask your wife or partner, a member of your family or a close friend to help you if you find it difficult to cope alone. It might be helpful to start by making a list of those people you want to speak to personally rather than allowing them to hear the news ‘on the grapevine’. You can’t rehearse your conversations, but you can decide in advance the important facts you want to convey, such as:

what type of cancer you have;

what type of treatment is proposed for you;

how well or unwell you feel at the moment;

whether you will be staying in hospital;

an indication of the likely prognosis, if you know;

whether there are any specific matters you would like help with (lifts to the hospital, help at home, walking the dog, company, etc).

Finding the right time to tell people depends on when you feel ready, and it can be made more difficult by the fact that you find talking about your cancer very upsetting or awkward. You may also feel that you already have enough to deal with, without the added distress of coping with other people’s reactions. However, putting it off means that you continue to have one more source of worry on your mind. You may even find that after the distress of the initial conversation, you find some relief in starting to talk more openly. Sadly, pretending to the outside world that it doesn’t exist will not make it go away, although there may be situations where you do delay breaking the news – if a friend or relative has an important exam or a big celebration or a holiday which you don’t want to disrupt. It is your choice, and you must do what feels right to you.

Whether you break the news face to face or by telephone, try to make sure that you have enough time to talk, and that you will not be interrupted or distracted. Perhaps ask, ‘Do you have time for a chat?’ This will often act as a signal that you have something important to say, but it will help if you also make it clear that you have a serious matter to discuss. You might say, for example, ‘You might have realized that I haven’t been too well recently’, or simply, ‘I’m afraid I’ve got some bad news’. It is tempting to try to soften your words or to play down your situation to make it less distressing for the recipient of your news, but it is important not to avoid giving them the facts.

Our first instinct was to cling on to each other and tell no-one. We realized, though, that this was not a situation we could conceal for long, even if we wanted to. It was further complicated by the fact that we were running a business together, and we didn’t want our clients to worry that they would no longer be properly looked after! In the event we began telling close family and friends very quickly but we were still in shock and deeply upset and had no idea how to go about having these conversations. As time passed, it became a little easier as we got used to the new medical vocabulary and hit upon phrases to start our conversations: ‘Please don’t panic, but we’ve got some bad news’, ‘I’m afraid we’re having a bit of a crisis’. It all sounds very obvious, but there are times when you simply cannot find any words to describe what’s happening except, ‘I’ve got cancer’.

There is no easy or euphemistic way to say, ‘I’ve got cancer’. Most people react with shock and horror when they hear the word ‘cancer’, and immediately assume the worst, particularly if they are a close family member or friend. You may not feel like going into details yourself, and if you have someone with you, they can help at this stage of the conversation by providing some basic factual information, or a brief chronology of the events that led up to your diagnosis. Perhaps you can start the conversation, then say, ‘I’m finding this very difficult to talk about at the moment. Do you mind talking to (your wife/partner/mother/friend) instead?’ It may be that the outlook for the future is good, and you can give some reassurance about the anticipated effectiveness of treatment, for example. If this is not the case, then you need to make equally sure this is understood: ‘I’m afraid it sounds serious’.

It is almost impossible to have such a conversation and not become emotional, and it is important for you not to feel awkward about expressing your feelings as well as the facts about your cancer. You are allowed to say, ‘Right now, I feel really scared’ or “I still feel completely shell-shocked’.

These conversations can be upsetting, and depending on who you are talking to, you may want to keep it quite short in the first instance. You can suggest talking again later in the day or the following day. Just as it was difficult for you to absorb information about your cancer through the shock of diagnosis, so it can be hard for loved ones to do the same. It is important that they appreciate the seriousness of what you are telling them, so keeping the details reasonably brief and factual will make them easier to absorb. Close family and friends may well want to spend a lot of time with you when they hear about your diagnosis, talking about your cancer with you and showing their support.

Telling children about your cancer can be especially painful, as we instinctively want to protect them from something as unpleasant as cancer. Trying to conceal the truth from your own child or others who are close to you is rarely a good idea. They need time to come to terms with your illness too, and it is not fair to deny them that time in the belief that you are shielding them from something they can’t understand. Finding the right words to explain your cancer to children may take time, and you will also need to allow them time to ask their own questions. Try to answer them as honestly as you can in terms they can grasp, be aware of how well they are absorbing what you tell them and don’t necessarily assume that older children will understand or cope with the news better than younger ones, or vice versa. They may want to repeat their questions to make sure they have understood, so try not to be too impatient if you have to go through your explanations several times or reiterate your assurances that your cancer is in no way their fault. The cancer support organization BACUP publishes a booklet called What Do I Tell the Children?, which might help you to find the right words.

You will repeat your news a number of times, and have similar conversations with a number of different people. You may become tired of using the same words and describing the same sequence of events over and over again, not to mention coping with all the various reactions people display. This can become tiring and frustrating at a time when you need to devote your physical and emotional energies to your own well-being. It might be a good idea to ask a few close friends if they would mind passing on the news to other friends, or for one family member to inform certain others. Don’t feel that you have to shoulder all the responsibility yourself. Alternatively, a short letter might be appropriate for passing on the news to certain people, if this is what you want to do.

Telling your employer

Although the emotional ties to people like your employer and work colleagues may be less strong, this does not mean that telling them about your cancer is any easier for you.

If you are in employment you will need to tell your employer about your cancer and make sure arrangements are worked out for you to take time off for your treatment. There may also be times when you feel too unwell to work, and your employer needs to appreciate that you will not necessarily be able to predict these in advance. You may fear that your employer will not view the prospect of regular or prolonged absences from work favourably. However, they are more likely to be distressed about your cancer than worried about any disruption that may arise at work. Most employers should be sympathetic to working out flexible arrangements which accommodate your treatment and illness

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Different people react in different ways to their chemotherapy. Having to spend time in hospital either as an in-patient or an outpatient will inevitably lead to some disruption of your normal life. There may be times when you feel low physically or emotionally, and you will need extra support from family and friends. On the other hand, there may be times when you feel stronger and are able to work or follow your usual daily routine. The trick is to recognize when your body is at a low point (your doctors will be able to advise you about this), and not to try to fight it. You will recover more easily between cycles of treatment if you don’t try to pretend that your body is at full strength. Do take it easy and rest when you need to: you will find that your body responds better if you take notice of what it is telling you. Of course, this is easier in theory than practice, and it is discussed in more detail in Chapter 7.

Neil underwent four separate courses of chemotherapy. The first was a ’standard’ regimen for testicular cancer which lasted six cycles and initially appeared very successful. The others comprised different combinations of drugs to try to bring his cancer under control after it recurred.

I had no idea what to expect from chemotherapy, or even what it looked like. At first, I had a needle inserted in a vein in my arm, and the drugs were infused from a drip through a tube into the needle. Because of other complications, it was soon decided to insert a Hickman Line in my chest and my chemotherapy was administered through the line. The idea of a length of tube protruding from my chest was not a pleasant prospect, but it is surprising how quickly you get used to these things! When I went home, I was taught how to keep it free of blockages by ‘flushing’ it, and this simply became part of my routine. Not being allowed to soak in the bath was a minor source of irritation as the line has to be kept clear of germs, but this was not a big deal in the overall scheme of things.

I tolerated my first chemotherapy regimen relatively well and had few side-effects other than losing my hair – not a major issue for me in the context of getting rid of my cancer, although some people feel differently. The same applied to the second course. But the third was another story. I was very sick, which meant I didn’t feel like eating for several days – although I was more than aware of the need to ‘keep my strength up’. My recovery time between cycles was greater and maintaining levels of resolve and determination was, at times, an effort.

This period was hard work but I had learned by now not to fight the effects of these drugs. Our lives were pretty quiet for a while – coping with my cancer and treatment took a great deal of our time and energy. But we stuck together and managed, and made the most of my ‘good’ days. When my chemo ‘cocktail’ was changed again, most of my side-effects disappeared, and life became much more normal once more.

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Stomach cancer is another of the cancers which tends to be roughly twice as prevalent in men than in women. It can behave in different ways, depending on whether it is of a more superficial and less aggressive type or more invasive and aggressive. It begins in the stomach lining, and can spread through the stomach wall from where it is able to start invading nearby lymph nodes and other organs such as the pancreas and spleen. It may also spread to the liver via the bloodstream.

It is clear that there are links between the incidence of stomach cancer and some types of diet.

One of the problems with stomach cancer is that it may not produce any readily distinguishable symptoms in its early stages. Signs which you may become aware of include an indigestion-type ache, pain in the upper part of the abdomen and a general sense of tiredness, loss of appetite and weight loss. These are, of course, symptoms which many of us experience from time to time and to which we may therefore attach little significance. If they persist, however, then you should have a check-up with your doctor.

Diagnosis of stomach cancer is by taking a biopsy, which is done using a gastroscope, a tube which is passed into the stomach via the mouth to look at the stomach and take samples. You are also likely to have a barium meal X-ray of your stomach, in which the barium you drink is highlighted on the X-ray and makes it easier for doctors to examine the contents of your stomach. You may also have blood tests and further scans, to check whether there is any spread of cancer.

Surgery is the main form of treatment for stomach cancer and the details of the operation will depend upon the location of the tumour and whether the cancer has spread. Radiotherapy may be used if surgery is not feasible or to control symptoms if the tumour has spread beyond the stomach. Chemotherapy may be useful in some cases, particularly for the relief of symptoms when the cancer has spread.

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People sometimes react unexpectedly to a food that they normally tolerate, if they are under a great deal of load or stress.

If you have multiple sensitivity – are allergic or sensitive to many other things – sometimes the overall load seems to affect your system. Your tolerance drops unexpectedly and you start reacting to many things at once. High pollen season or high mould season often seems to bring on food sensitivity in people who are fine at other times of the year. Exposure to places with high levels of chemical fumes can bring on food reactions, often temporarily. Eating too much of foods to which you react, but which you tolerate normally at low levels of consumption, can tip you over into reacting more often. Watch out for triggers of this kind. Test foods again when your system is less under stress.

The process of exclusion dieting sometimes brings on temporary intolerances as well, which disappear once a permanent diet is established. Some people seem to go into a downward spiral, starting to react to many things which normally they tolerate. If you react to a lot of things suddenly on an exclusion diet, it does not mean the situation is permanent – it is sometimes just the body’s response to the process of testing. Test foods less often and less intensively – spread out testing to wider intervals if you can possibly do so, to give your system a rest.

Women are prone to react more to foods at times when their hormones are fluctuating – at ovulation in mid-cycle, or at pre-menstrual times. See if your food reactions correspond to your menstrual cycle. If your cycle is erratic, look back at when reactions occurred and see if there is any pattern. Hormonal surges at the menopause, or during and after pregnancy, childbirth and breastfeeding, can bring on temporary food sensitivity.

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Certain factors can trigger allergic and sensitivity reactions. Stress on your system can set off a reaction where normally you would be fine. Physical trigger factors can include getting too hot or cold, excessive exercise, a viral infection, and allowing blood sugar levels to get too low or too high. Many women find their symptoms only appear, or get worse, at times of hormonal change – at menstruation, at ovulation in mid-cycle, after childbirth. A significant number find they develop symptoms for the first time at the menopause, or after hysterectomy.

Emotional or mental stress can also play a part in setting things off. Overwork, anxiety, bereavement, money worries, depression – all of these can trigger reactions.

The use of certain drugs can also cause onset of allergic disease and sensitivity for the first time. Some people can link the beginning of their problems to a course of antibiotics or, in some women, to use of the contraceptive Pill. An accident or injury may also bring on allergy and sensitivities. In some people, chemical sensitivity follows an episode of overexposure to chemicals – such as accidental contamination, occupational exposure, or exposure to building, DIY or gardening chemicals. Sunlight can trigger symptoms in certain individuals, while others with allergies may also be sensitive to electrical fields or to the lack of sunlight in winter. (For information on photosensitivity.

People with multiple allergies are often also sensitive to the level of ‘overall load’ on their systems. They may have few problems most of the time, but will start to react to things they normally tolerate when they come into contact with other allergens or substances to which they are sensitive. Thus some people find they only suffer from food sensitivity in the summer, when they are reacting to pollens, or in the autumn when the concentration of mould spores is high. Other people discover that they only react to chemicals if they eat a food to which they are sensitive, or if they get a viral infection.

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If you don’t need a systematic approach, here is some basic advice. Pure cotton clothes are very often a good choice for people with allergies and chemical sensitivity. Allergy to cotton is rare, and much less common than sensitivity to wool, pure synthetics or blends. Some cotton clothes are treated with chemicals. If you have to wear cotton but are very sensitive to these, there are ways to detect and avoid them.

If you are allergic to cotton, but have to wear it because of multiple allergies, there are certain types of cotton clothes which produce much less flock and particles, and can be better tolerated by people allergic to cotton. Some people allergic to cotton can tolerate it in a polycotton blend. This may be worth trying. If you cannot wear wool and synthetics, and wear mainly cotton, it can be very difficult to keep warm. Silk is often a good choice. It can be invaluable for lightweight warmth, and chemically sensitive people tolerate it well because no resins are used on it. Silk jersey underwear and T-shirts are available now at relatively affordable prices. They can be very useful to protect sensitive skin against irritation from other fibres and as nightwear.

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Some babies, and carers, are sensitive to disposable nappies. The simplest and cheapest alternative is to use cotton Terry towelling washable nappies, sold by Boots the Chemist and Mothercare among others. Do not use sterilising agents for soaking. For disinfecting and killing smells, you can use one tablespoonful of Domestic Borax (available from Boots the Chemist) per nappy bucket. Do not use one-way liners, or other nappy liners.

For waterproof nappy protection, plastic nappy pants give off fumes at first, but do not do so once washed a couple of times. Wash and air before use. Tie-on plastic pants, sold by Boots the Chemist, give off less fumes than pull-on pants.

Other options, especially if you are sensitive to plastic pants, are reusable one-piece nappies which can be disinfected with Borax as above and washed. These have a 100 per cent cotton lining and some form of waterproof layer or cover – usually a synthetic fabric or fibre, but kept away from baby’s skin. Boots the Chemist sell one brand called Bumkins.

If you have to avoid all types of plastic or synthetic fibre, The Green Catalogue sell Dappers which are very thick 100 per cent cotton nappies which have no waterproofing layers – damp but pure! If you or your baby are allergic to cotton, they also sell 100 per cent wool reusable nappies.

If you cannot face rinsing and laundering re-usable nappies yourself, contact The National Association of Nappy

If you or your baby are sensitive to sterilising agents or laundry agents, do not use laundered nappy services, or else take care. Check what agents your local nappy hire service uses on their nappies.

Do not use baby “wipes on baby’s bottom. Use damp cloths at home, or take a damp cloth or natural sponge with you in a toilet bag as part of the change-kit.

For nappy rash, the best treatment is to leave a naked bottom out in the air, and to change nappies very frequently. Nappy rash often clears spontaneously if food or chemical sensitivity is sorted out. If you really need a soothing cream on chapped, sore parts, Calendula homeopathic cream works well: use sparingly and infrequently as it is alcohol-based. Do not use it on broken skin or eczema.

Nappy change mats are usually made of plastic-covered synthetic foam. Avoid using these if you can, as they can give off strong fumes, especially when new. If you do use one, wash it well before use and auto remove fumes. See below for advice on using second-hand equipment. As an alternative to change mats, use a towel on a waterproof floor or surface. You could also use a towel over a waterproof plastic cot sheet, which gives off less fumes and is less troublesome than a change mat. Wash these a few times and air before using. These are useful to carry with you for changes outside the home.

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Moulds are used to produce some antibiotics. Penicillin was originally discovered as a by-product of a chance mould growth that had the ability to prevent bacteria multiplying. Penicillin is produced by growing a strain of the Penicillium fungus. Other moulds, for instance Cephalosporium, are also used to produce antibiotics. If you are sensitive to moulds, you may be sensitive to mould-produced antibiotics, through cross-reaction.

Antibiotics are produced from sources other than moulds, however; bacteria and other micro-organisms can be used to produce them. Tetracycline and Streptomycin, for instance, are not mould-based antibiotics. Mould allergy does not therefore mean that you are allergic to all antibiotics. If antibiotics are prescribed for you, and you are concerned, ask your doctor.

Athlete’s Foot is caused by a fungal infection. Some of the sym-toms can be excacerbated if you are allergic to moulds and react to the fungus itself.

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