Perception

Hi ,

 I read your message and saw you haven’t had a reply.

 I understand and I can relate to what you are saying about people expecting you to “get over it” because you have had your operation and they expect you to be all singing and dancing. They forget you have been through a traumatic experience of being told you have had cancer and then another having an operation and not to mention all the scans, blood tests, clinic appointments in between.

I was diagnosed nearly 7 years ago with cervical cancer. I had chemotherapy, radiotherapy, brachytherapy, several major operations which left me with a colostomy, urostomy and a fistula. During going through all of that, all my so called “work mates” dropped me, as all of my friends, apart from one. The only people who helped me and suported me were my mum and dad and then the consultants and nurses. My aunt’s boyfriend told me to “stop wallowing!”. And other so called friend told me “I look for sympathy!”. I no longer bother or speak to these people.

I find most people are ignorant and really don’t want to know but if the shoe was on the other foot, they would expect you or I or anyone else to be there and understand them. 

I was diagnosed about 18 months ago with PTSD. Not so much for what I had gone through but having a NG tube shoved up my nose and down my throat. A real terror I still have.

 I also find “celebrity” stories relating to the cancer “journey” or any soap storylines regarding cancer particularly off putting. Because, it is very different for everyone and a lot us do not wish to be constantly reminded about it and the storylines are for audience figures. I don’t believe they raise awareness of any kind. Leave the raising the awareness to the experts, like Macmillan and Jo’s Trust. I once saw two female celebrities on day time television both telling their “cancer stories” and they were both trying to out do one another as to who had the most treatments!.

You know you know you have been through an ordeal. Plus there will be clinic appointments, scans, blood tests, etc.,. However, you are brave, beautiful, strong and pretty cool; you have kicked it. And whatever other people’s perception is or whatever they think, that’s down them and their ignorance.

Sending you love and good vibes,

Lisa x

PS: Have you thought about looking at and joining the “Life after cancer” forum? We are a friendly bunch and will make you welcome and smile x

Thank you. I appreciate the reply. I will look into that group.

Hi Ziggy58

I had a radical hysterectomy plus chemo-radiotherapy 4.5 years ago for cervical cancer. I look very fit and healthy but I have various long term side effects from the treatment which have a significant impact on what I can do.  My experience had brought home to me how much we are judged on appearances and how little awareness there is of 'hidden disabilities'. 

You mention the amount of sympathy that breast cancer and losing hair attracts - one of my nurses said she was bemused/ fed up with the amount of attention that breast cancer attracts compared to the gynaecological cancers.  I tell quite a lot of people about my cancer experience because I raise awareness about the importance of smear tests; it's not uncommon for people to ask about my hair when I mention that I had chemotherapy but they tend to glaze over when I try and explain about my bladder problems and lymphoedema both of which are incureable unlike hair which of course grows back

I really value groups such as this forum because no one 'gets it' like someone who's been through it.

Best wishes

x

Thank you for your reply. I agree that the main problem is the hidden nature and also that people feel more uncomfortable about discussing gynaecological issues. I had already had endremetrious, polyps and poly cystic ovaries but always found it difficult to discuss with others. Happily there seems more support out there now and it's good people are just starting to talk more openly.