Dodging the bullet..........

[willow]

Hi everyone I am very privileged as I have just returned from an overseas trip. While overseas I felt that the last year was just a bad dream and that this new experience I was having was my reality and my worries had faded away and I felt pretty good most of the time. Yet I have quickly learned that everything is still the same now I am back home. I have had a pain in my shoulder for a couple of months now - when I got home I went to the doctor and she organised an ultrasound. I have also started back at work (part time). On Friday I was sitting at my desk when I got a message from the surgery that I had to make an appointment with the doctor as she needed to talk to me about my test results. Straight away my heart skipped beats then started pounding ....I felt sick in the stomach and started to shake inside. And that horrible sinking feeling in the pit of my stomach was happening. I rang the surgery and asked to speak with the doctor - they said I couldn't as she wanted to see me. The panic feeling was really starting to take hold. I told them to check with her. She eventually came on the line. She told me, 'Nothing serious showed up. It appears you have Bursitis.' All of a sudden the tears were streaming down my face.....I listened to what she had to say and hung up, all the time trying to hold it together. I sat there feeling I needed to talk to someone to tell them how I felt....the overwhelming relief- talk about the intense rush of fear I had felt ....the need to be held and to share these feelings. But there was noone I could do this with ....I couldn't even call family because there is noone who can totally understand what it is like. I felt embarrassed as I sat there trying to regain control of my emotions, hoping noone had noticed. Why had I overreacted like this........!! ?? I felt very uncomfortable... I thought I was coping with everything and had even accepted that this cancer thing is now a part of my life. But when faced with tests and results I am once again aware that I am constantly just dodging the most likely inevitable bullet. I am not sure I can go through these feelings again and again. It is really just awful to feel this way. And I realise that I have to do it by myself each time as noone else wants or needs to know. This has sharply brought me back to my reality and I don't like it. Thankyou again for reading this ....I just had to share the way I felt last Friday as I had felt so alone. But thank goodness my results this time were ok. Take care, Willow. xo

[harker]

I have felt the same way for a few moinths now, since I have had some indicators suggesting the cancer is on the move again. It has been exhausting trying to fit additional appointments in with my new schedule of full-time work. It has got me down, not knowing if I'm on the merry-go-round again or not. So I certainly can relate to what you are saying, Willow. I finally realised last week that I had been getting pretty cranky and it was because of the anxiety of not knowing exactly where things stand. I won't know, either, for some weeks yet. It is hard to manage this stage, isn't it. It really does stir you up. I live with the expectation that it will come back, but the glimmer of it is enough to really throw me.

[caring_partner]

Hi Willow. I can relate to the fear you have although I am just the carer not the cancer sufferer. You get so uptight waiting for results- you want the news to be good but are so fearful they wont be. My husband hasn't had any more tests since he started on Xeloda in February and is still on 3 weekly Avistan. Previously had 12 rounds of Folfox and Avistan. He is due for some tests soon but he doesn't want to have them until we have been on a 3 week trip to America and Canada in August. He said he just wants to go and enjoy the holiday and then deal with the rest when we return.The days leading up to test results are just horrendous.I felt so sad reading that you had no one to turn to that you could discuss your fears and concerns with.Please accept the cyber hugs I am sending your way. Take care of yourself Gail xxx

[samex]

Hi all, This is the ever present problem, even if the logical side of your brain is telling you that all is well. AND NO-ONE ELSE GETS IT! Like you Willow, I seem to have to face many of these days on my own as I don't wish to worry my elderly parents and my own family generally forget to ask about results. I recall about 6 months out of treatment when I was still having 3 monthly checks. My GP rang to say that he wanted to redo my liver function test. I was at work and just fell apart. Fortunatley I had lovely colleagues around me who jumped into the breach with tea and hugs. The results were fine, he was just being over cautious. I have a trip to China coming up in September (taking 16 school kids, so no holiday) and is just when I need scans, colonoscopies etc. I spent days pondering which way to go(have them before or after) but my GP chatted with me and I decided to wait. It will be 3 years from diagnosis and 3 weeks won't make any difference. This is what so many don't understand - it just never goes away and impacts on so many other things in our lives. I really hope that you are feeling better and I often try to relive my holiday in NYC last year when things become a little bleak. Take care all, S

[Jules2]

Hiya Willow I can only share my experience with you and that goes back to just over 21 years ago that my life was first touched by cancer. That time i was given a month to live or "x" amount of years and certainly it took some years to feel comfortable and it took a lot of years before i ceased to think much about cancer at all. This time i do things differently, in that i try very hard not to cross the bridges till i have to. Of course this attitude does not come easily nor naturally and it is something that i work incredibly hard on. I have so far (6 months out of treatment now) managed to keep a handle on things, although there is still a great sense of relief when i get the thumbs up. Cancer just sucks with all that it does to us even if we survive it - it leaves its scars from impact and changes us forever. I think that is one thing i am having problems coming to terms with this time. This time i was at a stage in my life where i was happy and things were getting easier and i had plans to travel etc... then wham ... forget the previous scenario and now i am just in limbo from the treatment and struggling with side effects. Of course i am grateful for the treatment and to survive this long "but"!! I hope you are feeling a bit better now that you have shared your feelings. It is difficult and even though we have mostly had different cancers ... there is still that sense of knowing. hugsss Julie

[Sailor]

Hi Willow The life sentence of cancer - but isn't it great that it is Bursitis! It really puts it in perspective to be able to say that. Bursitis is not pleasant, can be quite painful and debilitating, but compared to cancer returning is is almost worth celebrating. What a relief! Yes that is the advantage of a site like this - we all know where you are coming from and have been where you are. Take car Sailor An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody

[#7]

hi willow,and yes i too feel 4 you as it is such an emotional time.in nearly 2 years i have only had 1 good result (due 2 the effects of avastin)but it was short lived.scan results few weeks ago have shown an increase in size in a tumor in my liver and now i have the opportunity of a resection,which i should be very grateful for because in april i was told i was inoperable.i know this is wonderful news and everyone around me is over the moon but i am very scared at the same time.i am also going for a 3 week holiday to bali this sat so i too am hoping to leave my cancer my fears and my past behind me ,if only for 3 weeks.i know it will be here when i get back but just for a little while i want to be FREE!!!they want to operate as soon as i am back but my daughter is due to have her 1st baby(and my 1st grandchild) on the 2nd aug so i am torn as to what to do.will 3 weeks extra really make a difference??can i take that chance??why does cancer create so many unanswerable questions??nothing is ever easy with the bloody "C" word is it ??im also so sorry that you had no one that you could just reach out to and get a hug and tell you they were there for you.cancer is a lonely road sometimes even when you are surrounded by people who love you.lets just all pray or wish or send out for that almighty cure......love n light bigmumma x

[CATS]

Willow I felt for you being alone at such a fragile moment - I'm glad it's bursitis. As bigmumma said cancer is a lonely road even if you are surrounded by people who care for you. Today is Saturday - I think - I am on so many damn drugs for this and that sometimes I forget what day it is! Wednesday I got either - food poisoning, salmonella poisoning or gastro - my little contribution is being tested and I will find out next week. Another woman - a friend of a friend contracted salmonella poisoning from the same sushi bar as me two days earlier!!! Her doctor reported the incident - obviously it is in the too hard basket. Commonsense and my GP tell me that it is NOT cancer related - but I am having the exact same type of pain and unbearable cramps that I was having nearly 12 months ago - and yes- I do remember! Fear is such a powerful emotion and overrides every sane thought. I am in pain - I am on antibiotics - to be safe, I am on pain killers which make me drowsy and off balance - I have not felt this sick since my operation - it is not fair. I know I sound like a whinger and I am sorry but I feel like feeling sorry for myself as no one can understand the fear that accompanies every little unusual pain - bursitis for example - I and others on this site do understand - why can't those closest to us at least humour us - that would be better than "don't be so stupid of course it's not the cancer"! Bloody hell I'm getting sick and tired of living in constant fear - and my damn results are nothing to smile about either! Anyway look after yourselves and if anyone can come up with an idea how to laugh at fear - please let me know!!!

[Jules2]

Hey cats I dont have any remedies or strategies for laughing at fear. I am so sorry to read you are having such a hard time of things at the moment and goodness any sane person would be thinking the same as you are, if they were in your boat! IT is natural to think it is cancer that is causing us problems. Crickeys, the first time i had cancer i would go to the doctors with a sore elbow. Very lol now but at the time it was a valid fear in my mind. I think family and sometimes friends just cannot comprehend what we go through as cancer patients and thank goodness we arent island's in our feelings and thoughts. I hope your gastro problems pass quickly for you. hugsss Julie xoxo ps the cat is in charge and finally turned up. It got lost in the house for a while but is settling in quite well and eating, drinking and coming out for a quick cuddle and pat before it disappears again. Pretty much what it does in its own home. I call it "witchy" because it likes to bite me. 😄 It's real name is Ahlee i think. Some high falluting name for a high falluting cat - "apparently"!!

[CATS]

Thanks Jules - One of my surgeons told my sister that I WAS NOT ACTUALLY FEELING PAIN - IT WAS "ALL IN MY MIND". She said the brain remembers traumatic experiences and what I am feeling now and in the past was not pain as such. Yes I am confused ... I can understand to a certain extent and can see how that could happen, but this food poisoning or whatever it is- pain is real!! not imagined. I do not understand the power of the brain and how you can 'tap' into the brain and use it's healing powers - this is right out of my league. The more I learn about the brain, the more confused I become!!! All I know is the pain I am experiencing (seems)IS the same as the bowel cancer pain. Actually it is starting to make a little more sense - as to what the surgeon said - looking at what I have written things are falling into place- but I am still having severe crampy pains. I still haven't got the results back but all I know is-the trauma and worry and pain I have been put through since I ate off chicken and sushi - I wish it on those who were too lazy to practice safe hygiene. Enough of that - I'm glad your cat sitting is going well- she sounds like a little princes - very precious especially with a name like that!!! You made me laugh especially when you call it - 'it'.

[Jules2]

Hey Cats Crickeys you are being put through the wringer at the moment! I really hope it improves for you soon. I understand some of what you are saying re the brain and pain. If you go to a pain management thingy i think they teach you techniques to deal with pain rather than upping medications. Thats for chronic long term as far as i know. Just goes to show how powerful our brains are in relation to our bodies. It is always dodgy buying take away food and over my years of working i have worked in a couple of places and yup you really do need to be careful. I think the health dept that perform the checks need to do much more regular checks! When do you get your results back? I hate waiting for results it is exhausting i find. I find myself slipping into that see saw emotion and then its so tiring to try and stay impartial without burying one's head. You will be pleased to know that "it" is ruling the house. lol Ahlee or witchy as i call her bit me the other night. This was after me doing the obligatory scratch around the jaw and then the tail pull that she likes so much and then to finish off we had the tummy rub and then "bite". I am sure you can insert a name here that she got called when she drew blood. 😄 I have put out her tunnel today so tonight i am sure she is going to have a ball when we are all sleeping. Mind you i have put it in the passage and i will move it because its right outside my bedroom door. She hides under my bed till my son goes out and then pops out for me to stroke her. I am well trained, can you tell? Oh the witch is on cue she is at the back door looking out at my long grass that needs mowing. Shame i cant harness the cat to the lawnmower and let her chase me round the backyard. hehe omg she is such a princess! She is pretty funny really and tries to pretend she doesnt like me but she really does. Ok cats i better get some things happening here and i think a nana nap is on the cards this arvo. Hope you are ok despite all your ailments at the mo. hugsss Julie xo

[Jules2]

Hey Cats Crickeys you are being put through the wringer at the moment! I really hope it improves for you soon. I understand some of what you are saying re the brain and pain. If you go to a pain management thingy i think they teach you techniques to deal with pain rather than upping medications. Thats for chronic long term as far as i know. Just goes to show how powerful our brains are in relation to our bodies. It is always dodgy buying take away food and over my years of working i have worked in a couple of places and yup you really do need to be careful. I think the health dept that perform the checks need to do much more regular checks! When do you get your results back? I hate waiting for results it is exhausting i find. I find myself slipping into that see saw emotion and then its so tiring to try and stay impartial without burying one's head. You will be pleased to know that "it" is ruling the house. lol Ahlee or witchy as i call her bit me the other night. This was after me doing the obligatory scratch around the jaw and then the tail pull that she likes so much and then to finish off we had the tummy rub and then "bite". I am sure you can insert a name here that she got called when she drew blood. 😄 I have put out her tunnel today so tonight i am sure she is going to have a ball when we are all sleeping. Mind you i have put it in the passage and i will move it because its right outside my bedroom door. She hides under my bed till my son goes out and then pops out for me to stroke her. I am well trained, can you tell? Oh the witch is on cue she is at the back door looking out at my long grass that needs mowing. Shame i cant harness the cat to the lawnmower and let her chase me round the backyard. hehe omg she is such a princess! She is pretty funny really and tries to pretend she doesnt like me but she really does. Ok cats i better get some things happening here and i think a nana nap is on the cards this arvo. Hope you are ok despite all your ailments at the mo. hugsss Julie xo

[Jules2]

Hey Cats Crickeys you are being put through the wringer at the moment! I really hope it improves for you soon. I understand some of what you are saying re the brain and pain. If you go to a pain management thingy i think they teach you techniques to deal with pain rather than upping medications. Thats for chronic long term as far as i know. Just goes to show how powerful our brains are in relation to our bodies. It is always dodgy buying take away food and over my years of working i have worked in a couple of places and yup you really do need to be careful. I think the health dept that perform the checks need to do much more regular checks! When do you get your results back? I hate waiting for results it is exhausting i find. I find myself slipping into that see saw emotion and then its so tiring to try and stay impartial without burying one's head. You will be pleased to know that "it" is ruling the house. lol Ahlee or witchy as i call her bit me the other night. This was after me doing the obligatory scratch around the jaw and then the tail pull that she likes so much and then to finish off we had the tummy rub and then "bite". I am sure you can insert a name here that she got called when she drew blood. 😄 I have put out her tunnel today so tonight i am sure she is going to have a ball when we are all sleeping. Mind you i have put it in the passage and i will move it because its right outside my bedroom door. She hides under my bed till my son goes out and then pops out for me to stroke her. I am well trained, can you tell? Oh the witch is on cue she is at the back door looking out at my long grass that needs mowing. Shame i cant harness the cat to the lawnmower and let her chase me round the backyard. hehe omg she is such a princess! She is pretty funny really and tries to pretend she doesnt like me but she really does. Ok cats i better get some things happening here and i think a nana nap is on the cards this arvo. Hope you are ok despite all your ailments at the mo. hugsss Julie xo

[Sailor]

Hi CATS Many years ago I sat and listened to a lady pain specialist give a lecture to postgraduate nurses, and the first slide she had had in large letters "YOU DO NOT HAVE THE RIGHT TO DENY ANOTHER'S PAIN". I have a son who suffers chronic neuropathic pain that has basically ruined a lot of his life. Many many professionals denied his pain, or accused him of being a junkie and wanting drugs. Professionals, like surgeons and triage nurses have treated him appallingly, so I get angry, very angry when I hear what you have been told. That is why I made sure that I was at the pain summit held earlier this year to get a better deal for those who suffer pain for whatever reason. It is irrelevant whether it is in your mind or not, YOU ARE IN PAIN, and no surgeon or otherwise has the right to deny that. Pain treatment - yes cognitive behaviour therapy does have a role in pain management, but that doesn't say your pain is in your mind. What it is seeking to do is to train your mind to deal with the pain messages differently. There are main ways of dealing with pain and one of the things everyone should realise is that if things like analgesics and anti-inflammatories no longer work it is OK to use things like opiates and YOU WILL NOT GET ADDICTED. Pain is the perfect antidote to the addictive properties of opiates and provided the pain specialists get it right you can walk round with a huge amount of opiates controlling your pain and live normally. My son does just that - well his normal is a bit different to my normal but that is another matter. What caused his pain a car accident and bad pain management following his successful surgical repairs that then went from acute to chronic pain. Just the thing that I learnt at the pain summit should not happen. So go back to your surgeon and tell him you would like to consult a pain management specialist and don't let him fob you off with an anaethetist. AS my partner has just commented - Your surgeon has a lot to learn. cheers Sailor. Any fool can carry on, but a wise man knows how to shorten sail in time. Joseph Conrad

[willow]

Hi Cats I hope you are feeling a bit better - how horrible to get gastro on top of everything else you have to deal with ....yes it would be nice if family would just humour us. I have thought about writing an email to my daughter to explain in detail how I feel about things but I think this would make her angry. Pain is awful and if you are feeling pain then it 'is' real. I lay awake a lot of last night - I now have a pain in my leg....and of course I am thinking it is cancer. My oncologist (I saw him again last week) said that I am at greatest risk of a recurrence in either 2010 or 2011. I am now once again on a downhill spiral thinking that everything I feel is cancer. I am now also feeling that my time is limited and it terrifies me. I thought I had started to get over this feeling. I am amazed at how you seem to cope with things - you take care of yourself. Kind regards, Willow

[willow]

Bigmumma Thankyou for your kind words of support. I don't know anything really about bowel cancer and the treatment but I do know that the fears and worries we all feel are so similar no matter what cancer we have experienced. Congratulations on the impending birth of your first grandchild. I cannot tell you what to do in regard to whether three weeks will make a difference -My circumstances were different of course but I too didn't know whether to go away on a holiday or stay home and have the pain in my arm investigated. But I do know that if the cancer I have comes back I will not have a long time so I rationalised that having a holiday with my daughter in the sun and leaving my responsibilities behind was a good thing to do - and it was the best thing I could have done. I managed to almost forget about cancer and treatments and pain and just enjoy being alive again and relax and have fun. The decision must be yours in consultation with your doctors. Take care and let us know what you end up doing. Kind regards, Willow xo

[willow]

Hi Samex Wow ...a trip away with 16 school kids......good luck ......! Thanks for your input - appreciated as always. Take care, Willow xo

[willow]

Caring partner All the best to you and yours.....thanks for the cyber hugs....right back at you......xo xo xo Kind regards, Willow xo

[willow]

Harker Soo right - just the glimmer of it is enough to throw you. I have only gone back to work part time and that is difficult enough - trying to cope with Doctors appointments and work and your feelings - good on you for going back to full time work. Good luck with your results - you must let us know once you get the them back. Kind regards, Willow xo

[Sailor]

Hi Willow Thanks for your comments - I can only respond from out of my concerns, experience of living with cancer for twelve years, information I have gained and reflection on that and experience. When people accuse me of having wisdom I revert to my favourite poet TS Eliot: "Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?" Anyway, let me share another experience. Some years ago I pushed my oncologist as to what my prognosis was. He was very reluctant to specify anything, but said, 'under present treatment regimes, between five and ten years' - well I knew that anyway. Five years came and that corresponded to my being the age at which my father died from a heart attack, so I found myself doing all sorts of strange things. Apart from chest pains, pain in the region of my cancer, I started to put my house in order, literally. Bathroom was redone, kitchen redone, aging appliances replaced, I even discussed prepaid funeral plans. I found myself restricting any forward thinking to two years - why two years I don't know. Then I went to seek counseling from a psychologist! I am now reconciled that I am well past both my statistical use by date and the beginning of he range of use by dates provided by my oncologist. I'm now looking forward to the ten years coming up. So yes you are going to do all those sorts of things - I suggest a bit of counseling may not go astray. I can recommend it. Cheers Sailor Even with the best charts, we are cautious about fixing our position, for it is so easy to goof. And the easiest way of all is by taking a mark, assuming it is the right one, and ignoring any others that may be in sight. 
Patrick Ellam

[willow]

Hi Julie Thanks for sharing with me and for your hugs. It means a lot to me that people on this site reply to my blogs (which I only seem to write when i am feeling down) I must write a blog one day when I am feeling really good and share some of my good feelings with all the really wonderful people who come on here and help others when they too are having problems. I often wonder if I make sense when I write....I don't often reply to people's blogs as I don't feel I have much to offer - all the regulars like yourself seem so wise and always have really positive helpful things to say. Take care, kind regards, Willow xo

[willow]

Sailor, Yes I was relieved to hear it was just bursitis (though I still seem to have some lingering doubts - what if they were wrong) It is hard to stay positive and I am still working on that. Thanks for your support. Kind regards, Willow

[Jules2]

Hey Willow I think you always make sense in your blogs. 🙂 Being diagnosed with cancer is tough and there is no way of avoiding it being tough because we all have to go through that process. If sharing helps you then it is great and i wouldnt worry about replying to people's blogs unless you feel you want to or can. Most of the time i wonder if i am saying the right thing to people or not. Dont forget your blog to tell us you were in England, that was great news! I had something similar happen to me a few months ago and i questioned how accurate their tests were. I was assured that with todays tests they are pretty accurate. I still have that little bit sitting in my brain "what if?". I dont think that ever goes away completely and in some ways i still have a little bit of "what if" left over from my first cancer. Living as we have to live, in that most of us have frequent tests to see if we are still clear or not, takes its toll on us. It all does even out with time though and does get easier. Be kind to yourself and take good care. 🙂 Julie xo

[samex]

Hi Willow, I agree with Sailor on the counselling idea. My sessions have been really helpful in that I no longer INSTANTLY jump to the wrong conclusions and I am beginning to find some peace in my life.I initially felt that I was weak to go - you know, we should just tough it out. But now I reealise that in some ways the finding the right balance is the tough thing to do. While my prognosis improves with every month, I do still find that I am terrified of odd pains. And here seems to be the place where you can express these fears as we all understand to some extent or another. I was only questioning myself today about whether this site makes me keep thinking about cancer or whether it helps to voice my fears and concerns. I decided on the latter - and here I am tonight! It is also so difficult to fit everything in when we are working. If life was a juggle before, it is even moreso now. And the psych says I need to take a whole day for myslf every week. AHhh. When I see her this week, I think we will have to compromise to a day a fortnight! Anyway, enough about me. Never feel that you shouldn't write/post. Everyone's thoughts and feelings are valid. That's what's so good about here. Take lots of care, S

[CATS]

Sailor,Julie,Samex,Reindeer and Willow - thankyou for your kind words. It is much appreciated when people reply and offer words of support when you are feeling low! Well I did NOT have food poisoning - Tangled bowel - was the diagnosis, no wonder I was in so much pain AND it was REAL pain!! I spent 3 days in hospital on a drip - no food - to relax the bowel and allow it to rectify itself - they said it has- but.. the dreaded but.... I am still in pain! Breathing through it and paracetamol help to a minor degree, but all I want to do is sleep. Now I am being told to 'get out there and visit my friends and enjoy myself and be (of all things - POSITIVE)'. Wow yeah I like that idea but when I'm not in pain please!! I've only been out of hospital for 3 days and being hospitalised is traumatic on it's own!. Anyway I'll go back to 'wallowing' (apparently that's what I am doing!)!

[Jules2]

Cats Just a quicky reply but enjoy that wallowing and its ok to do it!! Just dont stay there and put a time limit on it. Then while you are down there ... enjoy and really embrace it. Am really sorry to hear you got put back in hospital again. That happened to me quite a lot in the early days and whilst the staff are wonderful, its just not a great thing to do. HOpe they get your pain sorted for you. hugsss Julie xoxo