Saturday, 24 December 2011

Me and Bob - Christmas Message

Because Christmas is so different this year I have been acutely more aware on really how lucky I am.  Life is full of twist and turns and we never really know what is round the corner or know how we will be able to handle trauma and stresses.  There are so many people out there who are having a hard time over Christmas for so many reasons, and at this time of year when you are almost forced to be happy it can dampen your whole spirit. 

In some parts of our world people are dealing with just surviving with wars, hunger, extreme violence and heartache and how much do we think of them as we are tucking into our turkey or opening our presents.  Across the world the economic turndown has brought homelessness, unemployment and poverty making some people’s Christmas more about worry than happiness. And then there are those who are alone capturing memories of Christmas past, grieving for lost family, depressed and sad full of regrets.

All this makes me think about how much I do have, the love and support around me, friends, family, more than enough food to eat, presents and laughter – and good available medical care for dealing with my cancer.

I handmade most of my cards this year and wrote a little poem to remind myself and others about the true reason we celebrate Christmas and to try and capture that Christmas spirit, that fuzzy warm excited feeling you get usually on Christmas Eve:

Angels smile and on high sing
Candles flicker, bells joyously ring
Little lights twinkle, that feeling so warm
As we celebrate our Saviour born

So as Christmas time comes round once again
Through the darkest months our hearts aflame
With giving and receiving with love and joy
Celebrating this extra special birthday

 But even as I wrote this, I realise that I do so little to help and am really quite selfish, one who has so much while others have so little.  I thank God for those people, who do go out and volunteer, give their time and think and help others – they are blessed people.

A prayer I came across the other day summed it up personally for me although I would like to add, please guide me to be able to help those less fortunate than I – for lest we forget there for the Grace of God.

Heavenly Father, I come to you as humble as I know how
I confess my sins, those known and unknown
Lord, you know I am not perfect and fall short every day
I just want to take time out to say thank you
Thank you for your mercy, thank you for everything I do have
I realise that this life I’m living is full of trials and tribulations
But thank you for not putting more on me than I can bear
We must go through the storm to appreciate the sunshine!

I don’t talk about my faith that much, but it is my faith that has got me through some of my darkest days and whatever faith you have I hope that you find it uplifting when in times of trouble.   

Next year after concentrating on my cancer recovery, housing and financial needs (still many worries myself) I do so hope that I will be able to be in a position to help some of those less fortunate using my skills and experiences and in the best the way God wants me to help.  I hope to find more inner spiritual peace and calmness, and 2012 is an opportunity for me to change things, to prioritise the things that really matter, learn from the journey I have taken this year and move forward.

So as I just begin to feel that warm fuzzy Christmassy feeling as the inspirational light comes back into the world on such a special day, it just leaves me to wish you all a happy Christmas wherever you are, whoever you are with and hope you can capture some of the joy and charity of the Christmas spirit that can be found within all of us.

Blessed are the peacemakers for they shall inherit the world.

Sunday, 18 December 2011


Scientific studies have shown that expressive writing and talk therapy can help women with breast cancer feel better and that the electronic equivalent, for instance, blogging, is as good. have long known about the therapeutic benefits of writing about personal experiences, thoughts and feelings and further studies have shown that cancer patients who engage in expressive writing just before treatment feel markedly better, mentally and physically, as compared with patients who did not. It may be that blogging about stressful experiences such as breast cancer acts as a placebo to dull pain, just like in person complaining does or it could be that sharing personal stories triggers the release of feel-good dopamine (like eating chocolate!).

When going through the first year of my break-up I wrote a diary and poems to express my feelings, but when I was diagnosed with breast cancer for some reason I wanted a wider audience – a blog which I could put all my emotions and frustrations of what is like for me living day to day with breast cancer and that perhaps by my sharing these would help or inspire others going through the same thing.  I think blogging can be seen as a little indulgent but I also wanted something of a record of this time for my son to be able to read in later years and just to let him know how proud of and how much I love him. Because It’s not just me living with cancer day by day, but my son as well, albeit in a different way.

I asked my son recently what does he really feel about my cancer and he replied “honestly mum when I heard you had cancer it wasn’t such a shock, I felt this was just another crisis to get through”.  He felt that over the years there had been one crisis after another and this was just another one to get through, and there would be more in the future.  I wasn’t quite sure how to take this – lack of empathy - but sadly I thought over the years he has experienced the divorce, moving suddenly away from all he had known from birth, his father disowning and rejection of him, my depression, going to secondary school, his living environment, adapting himself to fit in with new people and family around him and making a whole new set of friends, and my monetary pressure.  It’s not been easy for him - he has been incredibly resilient and other than a few incidents over the years he is on the main well-behaved and responsible, doesn’t get into serious trouble and is doing quite well at school.  He is a bright boy, has made some good friends at school and some in the voluntary community through being a cycling star, has made many contacts in the area through, of all things, walking the dog, and is trying to set up his own web-design business – having now his first two clients.  But, don’t get me wrong, he is still has his own mood swings, anxieties, back chat, bossiness, over-confidence, selective hearing and everything else that goes with being a teenager - so he is no angel!

I know he will hate me mentioning him so specifically in this blog, but I do worry about how my having cancer is affecting him and if I am supporting him well while he copes with my mood swings and the extra responsibilities he has had to take on. 

I have been honest with my son from the start with regard to my cancer – I couldn’t hide it even if I wanted to and he needed to know the treatment I would have to go through and how it would affect me.  At school just before I started my first chemo they were going to through immune systems and he learnt all about white blood cells etc. Through this he was able to ask questions about cancer and the chemo treatment from his teachers and this managed to answer a lot of questions for him. Apparently involving children and letting them know what is happening, to include them in what I happening generally helps them cope better with a parent's illness particularly if they are teenagers. I made the school aware of each stage of my treatments and asked them to keep an eye of my son and offer any help if he needed even to just talk to someone.  This they did, but my son has not wanted to talk about it. I asked him if his friends spoke to him about my cancer and he said only if he took the lead which he sometimes did.  He also talks to his granddad now and again about any problems that crop up, and to some friends.  My son is now also opening up to me a bit more but I think he is worried about talking to me about his own feelings for fear of upsetting me.  I am glad he has some outlet although I know this might sound slightly silly but I am worried the he seems to be coping too well when he could be inside feeling very scared, angry and isolated.

I came across some advice from The National Cancer Institute in America which was a guide for teens, giving tips and ideas on how to talk about your parent having cancer and how to cope with it. Here are some extracts:

For the Teenager
·  Many teens feel like their parent’s cancer is always on their mind. Others try to avoid it. Try to strike a balance. You can be concerned about your parent and still stay connected with people and activities that you care about. 

·  You may feel bad about having fun when your parent is sick. However, having fun doesn’t mean that you care any less. In fact, it will probably help your parent to see you doing things you enjoy. 

·  A lot of people are uncomfortable sharing their feelings. They ignore them and hope they’ll go away. Other people choose to act cheerful when they’re really not. They think that by acting upbeat they won’t feel sad or angry anymore. This may help for a little while, but not over the long run. Actually, holding your feelings inside can keep you from getting the help you need. 

·  Many kids think that they need to protect their parents by not making them worry. They think that they have to be perfect and not cause any trouble because one of their parents is sick. If you feel this way, remember that no one can be perfect all the time. You need time to vent, to feel sad, and to be happy. Try to let your parents know how you feel—even if you have to start the conversation.  

·  Cancer treatment and its side effects can be difficult to go through. Anger sometimes comes from feelings that are hard to show, such as fear or frustration. Chances are your parent is angry at the disease, not at you. 

·  Let your parents know if you feel that there is more to do than you can handle. Together, you can work it out. Your mom or dad may ask you to take on more responsibility than other kids your age. You might resent it at first. Then again, you may learn a lot from the experience and grow to appreciate the trust your parents have in you.

·  It can be hard to stay calm when you aren’t sure what the future holds. You may be thinking—will my parent survive cancer? Will the cancer come back? Will life ever be the same? Will I laugh again?   Many teens say that having a parent with cancer has made them more sympathetic, more responsible, and stronger.  

For the Parent 

·  Don’t criticise more than you praise. Children are built up by praise and will go on doing what they are praised for - to get more praise! If they are criticised all the time, they are more likely to go on doing what they are criticised for. At least that way they get attention. 

·   You’re tired, busy and irritable, and you shout at your child. Your child turns away, dispirited and dejected. What do you do? Tell yourself you’re a failure and that you may as well give up? No! The last thing you want is for your self-esteem to descend to your boots! We’ve all done things we regret and we don’t need to drag heaps of guilt around with us. 

·   Instead, go after your child, apologise, explain that the way you reacted wasn’t her/his fault - and start building your child up again as soon as possible. It will work - every time. Self-esteem - or the lack of it - springs from a child's deeply ingrained experiences of how others, particularly their parents, relate to them. The words they hear and the attitudes they experience create your child's sense of their intrinsic value. The messages they pick up from you are bound to affect the way they see themselves - either positively or negatively.  

·   When it comes to building self-esteem, there is no substitute for simply saying as often as you can "I love you"; "You're great"; "I'm so proud of you". And the best time for doing it is when your words are not a reward for anything specific they have done. 

·  Take the time to leave a legacy of happy memories for your children – whether in big ways or small, and whether they happen spontaneously or require a little planning. Those times of fun, excitement, laughter, creativity and helpless side-splitting hilarity are experiences you will never regret. 

Looking at this led me to think more about stress itself and how both my son and I could manage it better.
Children say they know when their parents are stressed because they yell more, become more critical, argue with other people in the household, and complain.  Older children can be stressed by peer pressure and by the expectations of parents, teachers, and coaches. Going to school can bring elevated levels of stress each year. It is important that you, as a parent, model positive stress management techniques. If you cannot manage your own stress, you will not be able to help your child manage his.

Children react in different ways to stress. Some children become ill. Some may become withdrawn and nervous while others show anger and demand attention. There are also some children who do not seem bothered by stress. We often call these children resilient. We sometimes only think that negative things cause stress but positive events can also be causes for stress. Family events are often a source of stress for children.  We all know the well-known negative stresses, break-up of a family, physical abuse, separation, and rejection; parent being ill and job pressures etc. But positive events can also cause such as birthday parties, family parties, new pets, and the birth of new siblings.  Even family obligations and routines can create stress and tension and in the case of an active family that may be so busy that the needs of a child may be overlooked.

Children who isolate themselves from other children may be feeling stress and also those who are easily agitated, irritable, lethargic, lazy, or aggressive. Changes in behaviour are also a sign.  For example, a friendly, quiet child who suddenly has been fighting and arguing with his friends may be suffering from stress.

So what can I do to manage my own and my son’s stress:-

1.  Be open and honest - tell your children what’s happening, why you are anxious and how you are feeling -- just make sure you discuss it at a level they can understand.

Promoting a positive environment can help, for example praising children for the acceptable things that they do. Helping children see and understand the positive things about themselves and that they are worthwhile persons. Listen without judging the child or the situation; that is, if the child chooses to tell you about the situation that produced the stress. Help the child feel comfortable in expressing feelings and help the child in clarifying his or her feelings. You may need to correct any misconceptions that the child about certain situations.  

Helping children through stories can help - Sometimes children can't talk to us about the distress they feel. They may not have the words or the concepts to easily express themselves. They may feel shy, embarrassed, guilty, or ashamed. If you try to talk to them using adult logic, most children will "turn off."  Some stories can be therapeutic which help children feel better and cope better with their fears and problems. Telling children stories about children with feelings just like theirs helps them realize that other children have been through the situation too.  

Unresolved anger can be a potent source of stress. It is not whether you get angry but how you get angry that is important. Your child needs to know that anger is OK to be angry, but he has to learn how to express is so that others can hear it. Role playing a situation can be good. 

2. Present a plan of action - you don’t need to come up with a solution, only a next step.  Be proactive against stress. Develop a plan to deal with your child's potentially stressful situations.
Take baby steps. Help your child break down what needs to be accomplished into small, manageable steps.
Set up special time each day with your child. Spend 15 minutes a day just to talk, following your child's lead. If they don’t feel like talking and would rather do something else, do what they want to do. They may talk with you when you least expect it!.
3. Identify your most stressful time - it’s easier to manage stress when you know when you’re must vulnerable to it. It could be when you are getting them ready for school, or when they get home from school or other times when you are finding it difficult to cope.  

Make sure your child is not overcommitted. Children need time to relax and play at home. Prioritize your child's activities and drop ones that are not necessary.  Although getting physical helps reduce body tension associated with stress stretching all the major muscle groups. Also is the TV/Computer--Stress reliever or stress enhancer? Make sure your child's television watching and computer game playing are stress relievers not stress enhancers. Just because your child wants these mediums to decompress from the world does not mean that your child needs these mediums. Many TV and computer programs are extremely violent and competitive. This can easily increase your child's stress rather than decrease it.
Have a weekly family meeting or sit down and eat at the table each evening and ask each person at the to let each other know what was a good thing about their day and what was a bad thing about their day – this can open up honest discussion and identify what may be a stressful situation for both you and your child. 
Make sure your child eats well and sleeps well. Feed your child healthy, nutritious meals and snacks. Stress wipes out essential nutrients from our bodies. Give your child predictable bedtimes that allow them age-appropriate amounts of sleep.
4. Welcome other people - no matter what’s going on in your life, it’s always easier to handle setbacks with the support of others. The same goes for children too. So bring people into your lives instead of shutting them out when times are tough. Socializing and talking to others helps diffuse anxious feelings. It’s important for kids to know that they aren’t alone.
5. Plan for fun too - if you want to reduce your family stress, shift the focus from problems to pleasure – find some fun things to do together.
Manage your own stress well. Cut back at work if you can to be more available to your children. Use stress reducing exercises. Teach yourself and your child deep breathing or close your eyes and imagine a pleasant trip or a favourite memory. This technique of visual imagery or "relaxing daydreaming" is a great way to reduce stress. Your child might enjoy a nightly massage to relax him and help him sleep or if he does not like massage, try a "back tickle", gently and lightly stroking your child's back.
I would like to say I do all of the above, but I don’t and sometimes I don’t manage my own stress well either my own needs overriding my son's needs – we are all human.  At the moment we have another bit of added stress with our lodger.  She has her own issues and problems and is managing her stress by alcohol every day with her personality changing – this is something which at the moment neither I nor my son are dealing with very well.  The good news is that I have now been given a Band B for bidding for a council house so we know that hopefully this situation will not last long.  The sooner we have our own place to live just my son and I the better we will be able to manage our stress levels.
Each time I approach my next chemo I get a little more stressed, I want to prepare for it – the house tidier, laundry all sorted and shopping done.  I put upon my son to help me.  While recovering from chemo my energy levels are so low that I again put upon my son to help out more.  He hates this, doesn’t want the responsibility and is that age when he still wants to be taken care of and not to take care of others.  As with any teenager, he fights this and elects to play his computer, not get up or watch TV to block out these requests for help which I find infuriating and stressful in its self.  Sometimes I haven’t the strength for a battle of wills so just let it go.  Sometimes my son will surprise me and just get up and do what I need.  Its touch and go.  But I do feel his dread as I approach my next chemo and then the dread when he sees the change in me – he doesn’t express it, he hides it well but the tension is still there. 

I am so glad now that I am going to have my last chemo.  With each chemo I have the longer it takes me to recover.  I am now at the weekend before my last chemo, blood tests on Monday and I am still very tired and want to sleep during the day.  I should be more energetic, raring to go – but I’m not this time.  Perhaps I have been overdoing it a bit with Christmas nearly here and not resting enough – and although my reactions over the last three weeks were not as bad as I thought they would be the time I have needed to recover has been longer.
Roll on 2013!

Tuesday, 6 December 2011

What can you say and do when Bob is around

When Someone You Know Has Cancer - Part II

Part I of my blog spoke about the things that people say to their, friends, family and colleagues while going through cancer and how what they say is a lot to do with their own way of coping and not knowing what to say and do.  This is a big subject to deal with so had to follow up with a Part II.  I am no expert, but do know how I feel.  Having read many other people’s blogs on the same subject, had a look at what various physiologist have to say, and some of the downloads available all across the net again I put my own spin in this blog, my own experience, and my own feelings (as highlighted and italicized).
I am on day 6 after my fifth chemo - TAX, have skin flaking off my hands at a rapid rate despite how much cream I put on them, a horrible taste in my mouth, food taste of nothing, muscle pain, tiredness and very irritable – I think I have also gone through every mood swing you could over the last couple of days.  I do, however, feel a lot better than I did after my last chemo and it may be because I will soon be approaching my last chemo session before Christmas and starting radiotherapy next year – so as the expression says “there is light at the end of tunnel” – but I also add the adage – “ but just make sure it’s not a train coming to run you down!!”

Finding out that someone close to you has cancer is scary and can come as a complete shock and there are a range of feelings that go can go through you.  You may have many questions, both about cancer itself and then wonder about how you should talk to and act around this person. I remember quite distinctively how frightened I felt when I heard my mother had ovarian cancer – It’s just hearing that word CANCER – there was the anxiety it had been found in time, wanting to remain positive not just for my mum but also for ourselves to, to believe that she could fight this cancer; to have a normal life as possible while going through her treatment, and with both myself and sister living quite far away we wanted to be there for both my mum and my dad but unsure quite how to manage this with our busy lives, work and children.  We offered comfort and advice to my dad on what to do – but not quite realizing the burden he had on himself being the main carer and partner to my mum watching her go through this – we were living far away enough to be able to put some of this out of our minds a little. It was an emotional, worrying and stressful time and my mother dealt with it with dignity and with privacy not wanting to talk about how she was suffering and still trying to take care of everyone else. Privacy we respected because this is what she wanted.  I think if I then looked into all this more I would have said and done things differently. So going through my cancer I am so much more aware of what could have been going through my mother’s thoughts, how she may have felt and I now wish there could have been more that I could have done – I look like my mum but I am very different to my mother – I need to be open about my feelings, need to vent and need to blog – it’s my way of coping.
Pain is one of the main reasons people fear cancer. If someone you know has cancer, it is normal to be worried about seeing them in pain. Some people have pain because of the growth of a tumor or as a result of advanced cancer, while others may have pain from surgery or the side effects of treatment.  I have a little bit of pain around my surgery still but this is manageable, dealing with side effects of the treatment, which for myself I wouldn’t call exactly painful - is just distressing and incredibly draining.  I have other friends and family who are in constant pain or ill at moment and who not finding any relief, and although not suffering with cancer their pain can be getting them down and depressed.  They sometimes feel guilty talking to me about their own pain but personally I would rather know it’s sometimes takes the edge of what I am going through and we can commiserate through our pain together! I know it’s not the same for everyone …..

Don't be ashamed of your own fears or discomfort or discount having feelings of guilt if you are normal and healthy. It’s human nature to distance yourself from someone when they become ill and can force us to look at our own fears about illness, weakness, or death - making us reluctant to interact with the affected person. Isolation though can be a real problem for some people with cancer, so do make an extra effort to reach out. Remember also to take care of yourself. If you are close in age to the person with cancer or if you are very fond of them, you may find that this experience creates anxiety for you. Cancer often reminds us of our own mortality. So many unexpected people have reached out to me and cheered my up – it has made a huge difference how I am coping! One of the best things to come out of this is when I was diagnosed my friends and family did come instantly aware of their own health more.  Some old work colleagues went to visit Women Wellness Clinics, others in the family followed up with their own medical concerns which they had put off and one friend is now constantly checking her breasts - so a real positive action has come out of this.  My uncle called last night to see how I was, and it’s these unexpected calls that also make a difference.  A visit, a chat, a card, an email or text something to bring a smile just knowing you care means a lot to me.
The person with cancer may also be experiencing stress and emotional concerns, which add to exhaustion and it certainly does but then I have been used to quite high emotions and stress over the last three years – but also for some strange reason I have  become much less stressed – it might be that  I have realized that sometimes it is just not worth to stress and worry too much over things you can’t do much about and the fact that I have  a much bigger concern fighting my Cancer and bringing up my son – which is so much more my main priority! Just getting through a day can be a challenge without worrying about tomorrow.

You might know someone else being treated for the same type of cancer, but don't assume that any two people will respond to treatment the same way. Each cancer is different, and each person's response to treatment is unique. It is best not to compare one person's treatment to another’s. I am still counting myself quite lucky that my response to treatment hasn’t been much worse – and from what I have read or heard from other people it could be much worse – but I really don’t dwell on those stories I hear just what I am going through myself.
Each person reacts in his or her own way to cancer and its treatment. It is normal to feel sad and grieve over the changes that a cancer diagnosis brings. The person's emotions and moods can change from day to day, even from hour to hour. This is normal. A person with cancer may go through any or all of the following emotions and thoughts:  uncertainty, anger, a sense of lack of control, sadness, fear, frustration and guilt, mood swings, stronger and intense feelings, disconnection or isolation from others, loneliness and resentment I am sure if you go over some of my earlier blogs you will see all these emotions floating somewhere in the ethos.

At the same time, the person may discover some changes that are good:  a greater sense of resilience or strength, peace, or a feeling of being at ease, a clearer idea of their priorities in life, more appreciation for their quality of life and the people they love.  Since having my cancer I have noticed and observed all kinds of things – the love of my family, have experienced the kindness of others through words, thoughts and deeds which I may not have noticed before.   I have notice more the things that make me smile and happy.  I have had a changing attitude in which I have put myself in other’s shoes that has brought me a certain amount of peace and calmness I didn’t have before.  
Cancer can be very unpredictable. Someone with cancer can feel good one day and terrible the next. Expect that your friend or family member will have good days and bad days. Learning to live with uncertainty is part of learning to live with cancer, both for the patient and for the people around them.  This has been the hardest lesson to learn to live day by day and not making any plans or promises.  No point arranging to go out to with friends if you suddenly don’t feel well, No point going to work if you are going to make yourself feel worse – can’t organise an outing, visit or trip or know how you are going to feel on any particular day – although I have got to know the days that I will begin to feel better on – usually four day before my next chemo session!  But truly who of us does know exactly what is around the corner?

Using humour can be an important way of coping with any illness. It can also be another approach to support and encourage. However you should let the person with cancer take the lead; it is healthy if they can find something funny about a side effect, like hair loss or increased appetite, and you can certainly join them in a good laugh. It can be a great way to relieve stress and to take a break from the more serious nature of the situation. But please don’t joke unless you know the person with cancer can handle it and appreciate it.   I like to laugh, and laugh about my side effects and really want to thank my friend who comes and visits most Fridays where we do laugh, chat and have a mutual counselling session together.  I think humour is a fantastic way for getting myself through a hard time but I can well believe others would find it difficult to cope with humour from other people if they haven’t taken the lead on it and would find some of the remarks (see Part I blog) that can be upsetting.  I spoke recently to a man who had testicular cancer and he told me he dealt with his cancer with extreme humour often shocking people – but when people joked with him about it he found it very difficult to deal with.  I try to make sure that I have something to laugh and smile about every day – in fact I have been thinking of going to a humour workshop (have done one before and they are great) and would be great for me – are there any in Colchester? I believe that happiness creates endorphins which are natural painkillers so despite going through a hard time I choose to be as happy as I can be.
Some people find it helps to simply be hopeful and do what they can to maintain that hope. If the person you know with cancer seems upbeat and unaffected by having cancer, don't assume he or she is in denial. Making the most of every day may simply be their way of coping. While it is good to be encouraging, it is also important not to show false optimism or to tell the person with cancer to always have a positive attitude. Doing these things might seem to discount their very real fears, concerns, or sad feelings. It is also tempting to say that you know how the person feels. While you may know this is a trying time, no one can know exactly how any person with cancer feels. Am I hopeful, positive and optimistic?  Do people really know how I feel?  I try to be positive and optimistic on most days not just for myself but also for others around me because this is the way they want or expect me to be.  I find it far simpler for me to hide the fear and uncertainty but it can be hard to keep this up and it does slip out from time to time.  I am quite an open book really and there are definitely times I do withdraw to grief and be angry and just feel sorry for myself – having had depression in the past (but definitely not now) rather than thinking being negative like this is unhealthy it is actually important to recognise these feelings as well and work your way through them without them overwhelming you.

It's usually best not to share stories about family members or friends who have had cancer. Everyone is different, and these stories may not be helpful. Instead, it is OK to let them know that you are familiar with cancer because you've been through it with someone else. Then they can pick up the conversation.  May be its just human nature, if you are going to the dentist there is always someone with a horror story, same when you are pregnant – it’s in our nature but some comments are just not helpful!  Respecting my decisions about how my cancer will be treated, and how I deal with it day to day, even if you disagree, means a lot. 
You're not alone if you don't know what to say to someone who has cancer. You might not know the person very well, or you may have a close relationship. There is no real right answer to this. – It can depend on the emotional state of the other person, or who they are talking to. The most important thing you can do is to mention the situation in some way that feels comfortable for you. You can show interest and concern, you can express encouragement, or you can offer support. Sometimes the simplest expressions of concern are the most meaningful. And sometimes just listening is the most helpful thing you can do.  "How are you?" may seem sympathetic question, but it can also be too big of a question it might be better to say. ‘How are you doing this afternoon?”  A good thing to remember is what you say may mean more than you think it does`;, sometimes, it's not what you say first that's important, it's what you say next; and sometimes there is a time not to say anything at all, and just listen - listening seems a to be a bit underrated these days and a real skill to have because people want to fill the in the silences, say what they want, and then sometimes don’t think about what they are saying because they haven’t listened.  I am also guilty of this for none of us are perfect.  I also want to know what is going on with you (although it would be probably not best to tell me how great life is or who wonderful things are!)  and talk about things that have nothing to do cancer or how I feel. What about a good political debate, your last holiday, your pets, what’s on TV, gossip about other people?  Unfortunately I do think about cancer from the time I get up in the morning to the time I go to bed so it is good to talk about something else for a while.

A common phrase to use “If you need me, I’m here” or” let me know if you need any help”. . But this can be too wide of an offer and person you know with cancer may find it hard to ask for help or to appear vulnerable. Some people find it difficult when people offer help when they may not know what help they want and an open ended offer of help can make it harder to ask for help.  Patients undergoing treatment may feel their life is out of control and asking questions and giving people a choice can allow them to feel as if they are taking control. When looking into this on researching the suggestion is to offer to help in specific ways, rather than saying, "Call me if I can help." For example arrange to send or prepare a meal, offer to help with child care, offer a ride to and from treatment appointments, help run errands – and yes I also find it very difficult to ask for help unless there is no other way but it good to know that I can ask if I have to.  One  of the other reason I wrote this blog was because there was a lady on the Cancer Breast Care Forum who was being pressurised by a friend to constantly meet her for coffee, go out socially or shopping saying it would be good for her to get out of the house without understanding that this was not just possible for her due to her tiredness, and reactions to chemo, and in some instances  just her own self-image at that time – she would much preferred for her friend to come and see her just for a girly chat without having to feel pressurised to go out herself.  I want to do want to do the things that I used to do – but not having that energy, or spark, it is very difficult.  This doesn’t mean though I want to be left out of things, or not asked to go out!  Last week a friend picked me up to go for a walk on the beach – it was just a thoughtful gesture and so much appreciated.
It’s all a bit of a minefield isn’t it?  Truly though the above is not just if you are suffering from cancer or a long-term illness– in any difficult situation people find themselves it is helpful.  I can say that I have been quite selfish to myself, my feelings, my sensitivities, my hurts through this journey  and haven’t always thought about how others feel about my cancer – doing this blog and talking about it has made me think about others much more.  Truth is that any one of us could find ourselves in situations where we are overwhelmed and it is through the kindness of others, and offering kindness to others that we cope through this rollercoaster of life. 

Sunday, 4 December 2011

What not to say when Bob is around

When Someone You Know Has Cancer - Part I
I have now been accessing the UK Breast Cancer Chat Forums and have found so much support on these chat forums and lots of information.  But on reading some of them there are many common themes and I knew then that in one of my blogs I would have to put in something  around the difficulties of dealing with friends and family while you have cancer and more importantly vice versa the difficulties friends have with dealing with you having cancer and their coping mechanisms. 
I asked recently a particular close friend did she find it difficult having a friend with cancer – she said no that she felt she could say anything to me even if it was “bog off”!  I felt gratified but didn’t quite believe it.  On speaking to my sister this morning on this particular blog we had a very meaningful conversation – she told me that thinking back she has said things that probably weren’t right but it was her way of coping and struggling to find the right words to say.  She thinks and fears for me every day but doesn’t want to put those fears into words to me, and by my having cancer she fears for herself and her own mortality.  Sometimes she just wants to push everything a way forget that I have cancer and everything is normal again.  Sometimes she doesn’t just know what to say and she was sorry if she had ever said anything upset me by saying something unthinking about my cancer.  We spoke at length about my mother when she suffered and died from cancer and the way we were then and how we had talked to people in the past with cancer.  I think I understood my sister more in that one phone call then I ever had before.   People do have difficulties knowing how you feel, dealing with your mood swings and sometimes don’t think about what they are saying or urging you to do more than you can but the cancer sufferer also needs to sometimes understand where there friends and family are coming from, not to be too sensitive and look at the way they are coping with you having cancer. 

So I undertook bit of research on this for my blog some of the common comments other people have had and find very irritating.  The Breast Cancer Forum and Macmillan have some great download advice on all this so if you do want a bit more clarity do go to these websites.

Please do note not everything here is entirely my view and I have placed my own highlighted italic comments.  Really dealing with cancer and having a friend with cancer and knowing what to say and do is different for us all after all each person has their own way of coping and each cancer sufferer deals with their own personal journeys through their treatment in many different ways.  I just hope that this blog doesn’t sound too preachy or patronizing because it is not meant to be or upset anyone. I also want to say that I have not taken anything said to me as an offence, often laugh them off, and even often use these expressions myself!  However, when these comments are said I also realized it does depend on what state of mind you are in at that time – whether you are in a feeling positive or negative, where in time you are in your recovery period and many other factors.  But I must also say when blogging this I found it was quite a thought provoking exercise for me. 

First of all here are some of the listed most annoying things people with cancer hear a lot or have been said to:

1.   Breast Cancer diagnosis
“Don't forget how extremely lucky you are as breast cancer is one of the best to get" or Of all the cancers to get, breast cancer's a good one, it's very treatable”.  “At least you are getting your cancer over with while you are still young - They've caught it early so you've just got to do whatever they tell you and this time next year everything will be back to normal”.  Well loads of people get breast cancer now; it’s not such a scary word these days”.  “You could walk out of your house anytime and be run over by a bus!”  (Yep this is an expression I use myself but the amounts of times I have heard myself say this or other people over the last months - argh!).  “I wish I could have it instead of you"....  or “You know if anyone was going to get breast cancer, it was right that it was you. Because you’re so strong and can cope with it all”.

2.   On Treatment
“Well, chemo is no big deal these days and people have it all the time”.  I pity both the person who received and gave this remark: “Why are you so tearful? You’re not ill - you don't even have cancer now - the treatment is just in case”.  “Well at least you'll lose weight on chemo”.  (More like me -  The lady who gained about 30 lbs with chemo and who met a friend that had just found out about her cancer with the greeting "Are you sure you've got cancer? I thought people got "skinny" with chemo”.  Also the expressions “This will be over before you know it!”  “You look good for the rest”. Then this  thoughtless response when a friend’s mum asked a lady how she was doing after chemo and when she said she hadn’t got up till lunch time as she was so tired was told  “lucky YOU some of us have no choice and have to go to work!”; Also the great person who said to her friend “if I had Breast Cancer I would want both breasts off, otherwise your just a freak” and a more common remark for people having  or considering reconstructions "Well, Lots of people have paid lots of money to have what you are having done!”; or “at least you will get some perky boobs” and finally the comment a friend made to a colleague that really made me laugh "Ugh. WHY would you poison yourself like that? I mean, you could have taken the organic route rather than pumping all those toxins into you”!

3.    Other’s Attitude
“0ne day you will understand cancer is a gift”; “Oh, you'll look back at this as just a bump in the road"  toApparently your stubbornness will get you through this difficult time in your life”  to “You're only given as much to bear as you can cope with. This is one common for us all  - You automatically become brave, inspirational, positive, strong and people are surprised on how well you are coping;  “You sound very perky, it's like there's nothing wrong with you, you're so brave".  When I am told I am brave or they are so proud of the way I am coping  or didn’t know I would be so strong about it - there is only one question I can ask myself – what else can I be?  I am pleased that people see me in this way – but sometimes it put some pressure on me to sound and be strong, positive and inspirational all the time and sometimes I just can’t keep it up.  Think about the poor person who was told that she got breast cancer because she needed to be more forgiving. That she had some issues in my past that she needed to forgive someone for and then her cancer would be gone!”: Or being told that having been given breast cancer was "a  blessing" or a "test" to get through or " It's god’s way of telling you to make changes in your life..... (although to be fair I also think sometimes it’s like a test to get through and that I have found some unexpected blessings).  “We all have our own cross to bea!” (I have actually used this expression when talking about other people’s problems). Loved this one - my sis-in-law who said she was surprised that I couldn’t get insurance easily as she could get insurance because she has asthma, which is far more serious than cancer - at least cancer can be cured!

4.    Hair loss

Along with having a well-shaped head – and told you can carry it off being bald but that they never could – I think everyone who has lost hair has heard this one more than once!   ‘Along with you can carry off the no eyebrow look or I love your eyebrows now, they're so nice and thin - yours were too thick before.  One girl was told how much better she would look if she would wear mascara. After a dumb founded silence she managed to snap back and tell her friend that she would be sure to do so just as soon as she had eyelashes!  Or worse, one boyfriend said to his girlfriend “keep your head covered when I’m around, I don’t want to see you like that” …   and then there are those who say you look a dead ringer for Sinead O’Connor or GI Jane (to be fair no-one has actually said that to me yetI) Or the poor lady who had a fine covering of fuzz on her head and went out for the first time without a scarf. Two people she barely knew thought it was acceptable to ruffle the fuzz and say that her hair was coming on nicely!   Lots of people say that they had heard how your hair will grow back curlier, straighter or in much better condition, are they trying to tell us that it was in bad condition before?.  “Lucky to wear a wig huh” or “ lucky you, you'll get to wear a wig! I'd get a bright pink one if I was you - (and yes I have made jokes on getting wigs for myself)  I liked this question that was asked “Do you wash and condition your head even though you have no hair, and is it the same feeling as when men go bald" !  I also liked the story of the lady who went into work with her scarves on – a colleague had heard that several people in the office had converted to be Muslims and thought she might be one of them!

5.    Stories of other people with cancer

Loved this one – “sorry to hear about … know... happened to a friend of mine recently. She's in the psychiatric unit now - couldn't cope with the chemotherapy” and

 why oh why do people insist on telling you about people they know who have died of cancer!!! "Oh yes, my friend got it in her lungs and was dead within a week"  - Yep lots of cancer horror stories out there but also as many of all those hopeful ones where people know someone who has got over it and are now recovered – this is a bit of a conundrum because you don’t know how you are going to be  and although it’s great to hear about all those people who have recovered you may be some way off getting there yourself.

6.    Recovery and Survival

 Said after the final round of chemo – “ Just think, you’re done. Done? I’m done?…I guess I’m done with cancer everyone!. Nothing left to do. Umm, how about all the side effects and worrying for the rest of my life about recurrence? 60% chance we will be here in 10 years’ time” -  A comment made by one cancer survivor.  The most recent available data shows that 60% of people diagnosed with cancer are still alive 10 years later. Once our ops, chemo and radiotherapy and other treatments are over we have at least another 5 years on tablets and on-going tests –secondary cancer is always a concern. The expectations on us while sick are reactivated: time to get back to normal – full time work, time to go out and socialise, time to stop being afraid, time to move on. Of course I am going to be a cancer survivor and of course I should be happy to be alive and just embrace life, but I do expect to be also swamped by the conflicting feelings about this cancer and what it will leave in its wake. “But at least you can see the end coming and then it will be all over!”  Finally finishing with this story, “Last week a friend suggested we go to Egypt on holiday next April- but here`s the punch: She thinks we should book a single place each on the trip in case I get a recurrence in the next few months. She doesn't want her holiday plans to be upset!”

So what do you say or do when someone has cancer?  Part II of my blog will go into a little more detail but really for me it’s just what you say or do from the heart that matters and I have appreciated everyone that has tried to encourage and cheer me up – however you have expressed or done it!