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. 

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