HAVE YOU HAD CANCER DIAGNOSED? If you have had cancer diagnosed, I am sorry you are having to face what is almost always a very challenging experience, but I am glad you have got in touch and I hope to be able to make a few helpful suggestions. Somehow we have all built up an immense fear of cancer in particular, seeing it as an especially life-threatening illness, but recovery and survival rates have been transformed over the past two or three decades and by and large the medical facilities and treatment available to people living with cancer in this country are good. There is also a vast range of other support available to help you and those close to you. I have been inspired to write this leaflet not just by the problems readers send me but by working with Macmillan Cancer Support who are campaigning so that everyone in the UK knows they don’t have to face cancer alone. You can see the vast range of information and support Macmillan can offer at www.macmillan.org.uk (or control + click on the Macmillan logo) and their free helpline is open so you can talk to someone understanding and knowledgeable from 9 am to 8 pm every weekday on 0808 808 0000. On their website you can find information about different types of cancer and their treatments so you won’t feel you are facing quite such a massive unknown. Like all of life’s big experiences, being diagnosed with cancer is much more complex than you might ever have imagined before it happened to you. It’s not only a question of your health. It can throw up all sorts of challenges – in your relationships, in your family, in your view of yourself. How to talk about it The very fact of being diagnosed with cancer is usually a shock and can make you feel very alone. Even if you have a close relationship, you are the one who is actually living with cancer and you can withdraw into yourself, feeling no-one else will actually understand how you feel. Most will really try, if you give them a chance, and can help you feel much better supported and less isolated. Of course it can be hard to tell those around you, especially if you know they are likely to react with fear and distress, but it can really help to talk. It can be very hurtful to those who care for you if they don’t know what you’re going through, and it deprives you of loving support which can be a real comfort. Keep it simple to start with. Depending on what stage your diagnosis is at, say, “My doctor is referring me for tests for …… cancer,” or “The consultant has confirmed that I have cancer.” If those close you to react with distress and panic, ask them to work with you in taking things one stage at a time. HAVE YOU HAD CANCER DIAGNOSED? Page 2 of 6 Before you were diagnosed with cancer, your own impression as an outsider may well have been shaped by headlines which talk of celebrities “battling cancer”. It can feel very judgemental once you have been diagnosed with cancer yourself to suggest recovery is about how brave you’re being or how hard you can fight, when the reality is that cancer is different in every case, and its severity and treatability varies widely and is by and large outside your control. It can be very irritating if people unthinkingly start talking to you using that sort of language or deal with their unease by using easy phrases like “think positive”, but try to hear the good intentions beneath their words. Say something simple like, “Thanks for wishing me well.” They may be ill-informed and even insensitive but if you say something snappy or sarcastic you may frighten them off. With some people, ridiculous though it may feel at first, you may have to be the one to raise the subject of your cancer diagnosis even though you know they know. The problem is that those around you often feel inadequate and don't know what to say to you. Should they mention it or shouldn't they? I know it seems all the wrong way round to ask you to try to understand how the others feel, but it will help you in the long run. Don't let yourself be isolated by their fears. Say hello, even if you do have to shout across the road. If you know someone even passingly well, say something which opens up the subject rather than leaving it as the dreaded unspoken - after all, it is very much in your thoughts. Say something like, "I'm still having chemo but the shopping has to be done." People will offer care and concern if they are reasonably confident it will be welcome. It’s even more important to give yourself the chance of sharing your own feelings with those close to you. If yours is a rather reserved family, invite them round rather than wait for them to make the suggestion. Medical appointments When we are frightened or shocked our brain tends to shut down. It’s natural to be anxious if you’ve just been diagnosed with cancer and some find they emerge from a half-hour appointment with no memory of what was said to them about their treatment or the future. All they have heard is the dreaded word “cancer” and the rest of the conversation becomes a blur. You can be left feeling at sea with your worries. Make sure someone goes with you to every appointment who can be your eyes and ears. Medical staff do understand your need of support. If your partner is too distressed themselves, ask a grown-up child or responsible friend to go with you. Ask them to take notes of everything that is said. It helps if you prepare yourselves beforehand as well and write down all the questions you want to ask. Don’t leave the consulting room without having gone through your list and make sure you know who else you can ask if you realise you have more questions later. HAVE YOU HAD CANCER DIAGNOSED? Page 3 of 6 It’s helpful to get hold of a Macmillan Organiser, a handy, portable tool that's a lot like a personal organiser. You can order one from the be.macmillan.org.uk website. It helps you keep track of things such as your symptoms, your food intake, your appointments and your medication. It’s a useful source of support always at your fingertips and it also suggests questions to ask your doctor. Strains on your relationship Living with a cancer diagnosis isn’t just a health issue, it can bring new stresses and strains to a relationship and sometimes brings issues to the surface that were bubbling along underneath. One reader told me, “Since I was diagnosed with cancer two months ago my boyfriend has been distant and just plain angry all the time. He hasn’t wanted to have sex, hasn’t made any attempt to come to the chemo sessions or any other doctor’s appointments. I get that it is hard on him but I am just scared now and don’t know what to do. I do love him.” Keeping talking honestly to one another is the key to protecting your relationship. Admit you’re feeling scared or tired, or whatever is going on. Try to say sorry if you’ve snapped. Some people react to feeling scared or pressured by sounding irritable and tetchy. Try to make allowances for one another, give each other the benefit of the doubt. Make it a habit to say, “I love you,” even if yours hasn’t been that sort of relationship until now. You won’t regret it and it can help bring you closer and comfort one another more. If sex has been an important part of your bond, try to keep some intimacy going if possible, even if one or neither of you feels like having intercourse. You can kiss, cuddle and touch one another intimately, and bring one or both of you to climax if that is what you feel like. Think flexibly and work out what suits you two best. Reach out You can feel very lonely if you have been diagnosed with cancer and are maybe very ill. One reader told me, “I live by myself in a bedsit and I have no one to talk to. This has been bad enough but now I have been diagnosed with pancreatic cancer. I am not managing very well because I find it difficult to walk. I need help to do chores, go to the chemist for medicine, to the bank, to the shops. “I have no relatives. The neighbours in the next flat who were so good to me, fetching what I need and coming in for a chat, have moved away. I am only 57 but I feel a lot more than that. There seems no way ahead. I see everyone else rushing about their business when I look out of the window at the street below. Meanwhile I am stuck here with no future and the prospect of becoming more and more ill.” HAVE YOU HAD CANCER DIAGNOSED? Page 4 of 6 This reader is clearly in a heart-rendingly isolated and frightening situation. Even if you have a partner or close family, you can all tend to disappear inside yourselves emotionally, struggling with your feelings and probably practical issues too, like running the home and dealing with financial and any other worries. Please do reach out for support. Confide your feelings in those close to you. If that’s difficult – because you have no-one very close or issues like relationship difficulties feel too intimate – you can call the Macmillan Cancer Support helpline I mentioned earlier (0808 808 0000). They will understand even if you are coping with something difficult - like the reader who told me, “My husband of 26 years told me he was leaving me for our younger next-door neighbour while I was still having treatment for breast cancer. Everyone tells me I was well rid of him so why is it I can’t get over him?” If you’re a teenager check out Teenage Cancer Trust which supports young people with cancer and their families (www.teenagecancertrust.org, 020 7612 0370). There are other sources of helpful and understanding support too. Relate can help with relationship issues and you can have 45 minutes free online support to start with (www.relate.org.uk, 0300 100 1234). If you have young children, you may be wondering how open to be with them about what is happening. In general it is best to explain to children as honestly as you can, allowing for their age and ability to understand. They will pick up on the emotional distress anyway and it is more disturbing for them if the reason for it all is being kept secret. It will help them to know how this is going to affect them and their life. If they need taking to school or swimming for instance, arrange for them to go with somebody they trust – another parent or relative. Tell them that this is going to happen but reassure them that you’ll be there to read to them when they go to bed etc. Your child may not understand that you need treatment if you’re not showing signs of being ill in the conventional sense. If they ask about your illness and you are about to start treatment, tell them that it may make you feel tired or ill after you’ve visited the hospital. (Some children may feel frightened if a parent is suddenly in bed or sick and fear the worst.) Make sure your children know what to expect during your treatment. As this sort of worry can affect children’s behaviour and school work, tell their school and other adults they are in contact with so they treat them with understanding. You can find support to help you find the right words through Macmillan but also through Family Lives (www.familylives.org.uk, 0808 800 2222). Children have a sad tendency to blame themselves for something going wrong in the family, so be sure to emphasise to them that Mummy or Daddy being ill is not their fault, they are not being punished for something they did wrong. HAVE YOU HAD CANCER DIAGNOSED? Page 5 of 6 Family Lives can also help if the cancer diagnosis has triggered other tensions in the family. One reader told me, “I am a young grandma of 48 and recovering from cancer but it’s as though my family has fallen apart since I was diagnosed. I have always been a support to my daughter, who is a single parent with two kids. I was always close to them but my granddaughter has been getting into trouble at school recently and my nine-year-old grandson punched me in the stomach the other day. They’ve become cold and extremely rude.” I am afraid a cancer diagnosis doesn’t necessarily mean that everyone involved starts behaving impeccably, especially if it’s the mainstay of the family who suddenly looks vulnerable. Sometimes we need outside help to know how best to ease the tensions. Practical help As well as emotional issues, a cancer diagnosis can trigger a whole lot of practical problems, from paying the bills to getting meals on the table. Macmillan Cancer Support can advise about financial help available and on claiming benefits such as sick pay or employment and support allowance– there’s lots of information on their website – but don’t be shy to ask family and friends for practical support. Often they are longing to know how they can best help but may have no idea what to suggest, especially if this is the first such crisis in their experience. Ask them to cook you a meal or two for the freezer, or to mow the grass, put the vacuum cleaner round, or do some washing or ironing. I hope you’ve found this useful. You can download useful booklets on just about every cancer-related issue as well as about different types of cancer at www.be.macmillan.org.uk, phone their helpline 9 am to 8 pm weekdays on 0808 808 0000, and see a wide range of information on their main website www.macmillan.org.uk where there is also a lively online community you can join. If I can be of further help, please email problems@deardeidre.org, message me on my Dear Deidre official Facebook page (www.facebook.com/DearDeidreOfficial), or write, enclosing a stamped self-addressed envelope if possible, to: Deidre Sanders, FREEPOST, THE SUN, London, E98 1AX. Who should be our Angel of the Week? We're backing Macmillan Cancer Support and want nominations for unsung heroes who have helped you or a loved one deal with the effects of cancer. Find out more here: www.thesun.co.uk/macmillan. Deidre Sanders HAVE YOU HAD CANCER DIAGNOSED? Page 6 of 6 While I make every effort to ensure the advice and information I provide is accurate and up to date, my service cannot be a substitute for consulting your own doctor, solicitor or a face-to-face counsellor when needed. I cannot be held responsible or liable for claims arising out of our correspondence, nor if I have been misled about the facts and circumstances. T17L 9 February 2016