Returning to normal

[#1]

I think that once you have had cancer, you never return to "normal" as you used to know it. In my case, that was a very good thing! My previous life was too stressful and full of wanting to make everyone else happy, with no appreciation for how much better it could be and how much happier I could be. I am definitely a much more courageous and positive person now than at any point in my life. I don't let the small things get to me (at least not too often!) and I have taken risks and made changes that I never would have dared to before. My life is SO much better now that I can understand why some people call cancer a "gift". It's true that cancer is both the worst thing and the best thing that could happen to you. It's the worst thing for all the obvious reasons, but it's the best thing when you really take a long hard look at life and make the changes that make you a happier/better person. None of us ever know how much time we have on this planet. Everyone should view their life in that manner. Think how much nicer the entire world could be! Love and best wishes to all my "fellow warriors"! Fight the good fight and then live a great life! KathyKate

[sarah]

Hi all, I'm new to the site, and for so very long wanted to connect with others that are survivors, or living (a "normal" life) with the illness still. There's so much to say...... On the up side, I'm a changed person from the experience. Changed in the sense that I am more myself than ever; I know clearly what my priorities are, and my focus is. On the downside, it's kinda lonely still and isolating too - I have difficulty connecting with others. Others that cannot understand the true existential crisis that having such an illness has brought, as not many people feel comfortable, or the need that I do to exploring this in any depth. My priorities and focus are different to most people now.. Thank for the post.

[#3]

Hello Sarah 🙂 Yes cancer can be lonely. It is now over 12 years since I lost both breasts to cancer and, at the time I knew no one else who had had it. I did have the support of a very dear friend, but that was just about it. In fact I don't think there was the support back then that is here now and that has to be due to so many people making the effort to create places where we can meet others. I was even asked by a friend if it was catching! Since then he has had cancer himself and I think now has a better idea of how isolating it can be. I think we all find cancer is a life changing experience and that never leaves us. It gives us a depth of understanding that people who have never known illnesses that can prover terminal can possibly understand. The beauty of it is that we have grown wiser within ourselves are not so afraid of death or cancer and probably can handle crisis better than many other now. Stick around here and you will meet many people who have felt as you do and who will love to involve you. Good to see you here 🙂

[#4]

Dear Sarah You comments ring so very true with me. Even "best friends" who were all concerned to start with have been conspicious by their absence from my life as my illness has dragged on. I feel the following saying is a truism that applies: "Laugh and the world laughs with you, weep and you weep alone". It is a lonely business and the existential issues cannot be discussed with anyone reallym they just think you are nuts. My doctor expressed surprise that I was "anxious" and even suggested referral for psychological help was appropriate. I pointed out to him the if I was happy and well adjusted while dealing with daily bloody diarrhoea and pain then I'd be reaching for a straight jacket myself. i.e. I consider anxiety a rational response. They just don't understand or want to. As for the much touted cancer support services hereabouts, they have also been conspicuous by their absence ever since I turned down further surgery (plastic bowel etc...). They'll never receive another donation from me. Once I decided not to follow the standardised treatment plans (more invasive surgery, more radiation and chemo etc...) I was persona non grata. It is a lonely time indeed. jimf

[sarah]

Hi Darkiescorner and jpfethe, omg - this is such a revelation to me. What you have both said has touch me deeply, I'm teary and really feel your words. I feel so close to you already.. Darkiescorner, what you say about thinking there was not the support back then that is here now, is very true. I really feel for you. You would have been quite young at the time of loosing your breasts, I can just imagine the emotional hardship and incredible trauma in struggling to come to terms with this shocking wound to your body. I really feel for you. Ditto to jpfethe, your words about the absence of the "much touted cancer support services", I couldn't find any support whatsoever, and I was exhausted -both times.. The first time, I was young, bald and delivering pizzas to keep a roof over my head. People assumed I was a lesbian, and I experienced quite a lot of bullying from the general public. There is so very much, and it almost has nothing to do with the treatment: it's often the reverberations to the rest of your life that are the most traumatic. Much, much to reflect on.........

[#6]

Isn't that extraordinary jimf, that you cannot honestly take a responsible stand about your own body without being exiled. Yes of course you might have decided to let the cancer run its course, and why not? You know what you are doing and your decision is perfectly acceptable. You don't HAVE to follow their advice. Of course, you have taken the power to dominate your life out of their hands - so of course they 'wash their hands of you.' Of course you could do that 'awful thing' and die! Well what's so wrong with that? Who wants to keep going with cancer when you get to a certain point and begin to think that your life is totally taken over by the condition and nothing has any value. Why are people so afraid? I remember my surgeon saying to me "Well of course you will be feeling depressed, you have just faced dying." HUH? Well I didn't bother telling him, but it wasn't the first time, and no doubt won't be the last. Well you really are not on your own, and coming here, as you do, you will find people who understand you and your decisions without question. I had a very dear friend who was terminally ill after she was infected with internal Golden Staph in her lower spine when having a knee operation. There was no treatment other than ongoing antibiotics that the Staph keeps overcoming and, while at first her six children paid her some attention, as time went on, she was ill for ten years, they believed she was 'attention seeking'. No one realises one can be ill for years, it can take years for a condition like Golden Staph or cancer to finally kill, but people don't want to know, they think you are 'making a fuss over nothing'. There is no accounting for the human race 😞

[#7]

I was in my 50s actually Sarah, but really it doesn't matter when you get cancer it has the same affect on us all, I am sure. Losing my breasts was traumatic and it took time to find clothes I felt I could wear without being self-conscious, and of course anyone who knew I had lost them couldn't help but want to stare, but at the same time they were trying not to. It got so silly I just made sure I talked about it and made it easier for them to feel less uncomfortable. I was offered the chance to have implants but felt uneasy about the idea in case my body chose to develop more cancer under the implants. At the time the doctors thought I was being silly, but only recently a friend of mine who has had cancer 5 times already discovered a lump under her implant. It was cancer and she had to have a very involved operation to remove it.!! Of course, in the end we come to terms with what our bodies throw at us. We realise that being svelt and beautiful isn't what life is all about. It's about surviving the best way we can or deciding to keep our dignity and allow things to take their own course and accept it. But then, I think one does have to have cancer or some other life threatening condition before we learn all this.

[sarah]

....."Attention seeking", gosh, just so tragic and simplistically primitive. Such ignorance and lack of empathy. This being a statement of neutral observation. The raw truth is extraordinarily exacerbating.

[#9]

Yes, I do feel the human race has a lot to learn, and they are not going to learn it easily. I think we can count ourselves lucky we do understand about illness, loneliness and the 'anxiety' that jimf mentioned... I remember my friend saying just shortly before she died "I feel so lonely". of course I was there as her Carer, but I certainly knew how she felt because I too, was lonely. As I said to her, "I wish I could be on your road and take the loneliness away, but I can't any more than you can take away my loneliness" - waiting for a dear friend to die is such a lonely experience - as lonely as her's was dying. I tell you something - I will never fear cancer ever again or death!

[#10]

Thank you all very very much for the supportive answers.... they are more useful answers than I have received from my oncologist or GP that's for sure. Hey... you people do actually understand! I'm not afraid of death but am afraid of the process of dying and particularly if decisions are taken out of my control. Because I have taken control of decisions (as allowed by local law here) my doctor, whom I have to see weekly, will not even look me in the eye. He has actually stated quite bluntly that he considers my rejection of further surgery etc... morally wrong not to accept all the interventions they offer. Well having swotted up the treatment stats myself I know I'll gain only 8% better chance of survival if I have "the works" (and end up very sick and quite disabled as a consequence). As I have a background of 15yrs as a medical scientist I know the crap that is being peddled and it has more to do with medico-legal butt-covering than what's best for me. I strongly suggest you all do your own research (if you can) before accepting blindly the "commonly accepted" treatment protocols. Best wishes to you all and thanks again for letting me know I'm not the only one at odds with the "system". Sarah, I understand well your experience of "soldiering on" e.g. delivering pizzas when you are sick and just coping. You are brave. jimf