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" to “Apparently 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 …...you 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!