Am I paranoid?

[Deb1960]

I am getting a little pissed with the never ending but well meant assumption that everyone with cancer will recover. I went to a Living with Cancer workshop today, and even there, I had to point out that we do not all survive even with all the advances in cancer treatments. Sometimes our cancer is found just too late, and I got the usual response of people not wanting to talk to me or be near me when I tell them I am on palliavtive chemo to buy a bit more time. This is really getting on my nerves, does anyone else experience this or am I just paranoid?

[BJS]

You're not paranoid, people just don't want to accept the reality. My husband won't survive his cancer & I'm sick of people telling me stories of so & so having cancer & how well they're doing now!! Barring a miracle I have accepted my husband will eventually die, he's having chemo now but like you it's not for a cure but just to buy time. I wish you well - hang in there.

[Deb1960]

Thank you BJS I was begining to wonder if anyone else felt the frustration, the worst is friends who will not accept that this is the most likely outcome. My family have been great, we lost my step-dad 12 years ago and know that we don't all recover. If I can accept it and deal with it why do they think that telling me stuff like you mentioned above helps me. Do they think they know better than my entire oncology team. I was told by the leader in his field in Melbourne that he is very sorry but he can't help, I accept that this highly qualified man knows what he is talking about and has no reason to lie or give me false hope. Sorry for the rant BJS but today they just pushed all the wrong buttons for me. :)

[harker]

I am pretty moved by these comments. I am not in the same position, but you are highlighting the issue I have with the constant pushing of the fight/positive/win approach. I don't understand that approach at all. I would understand it even less and would certainly get grumpy about having to put up with it if I were in your position - both of you. I am not surviving (the best word for me, by me) because I am positive, fighting, brave, determined, inspired, heroic or any bloody other rubbishy word. I am surviving. If I were not surviving I would want people to acknowledge that I am most likely dying. Glad you both have stuck your heads up out of the trench... so to speak. All the best. I feel connected to you both and can't see why that won't continue. H

[Deb1960]

H, I am so liking what you have written, I am not fighting this, I am not brave, I just live one day at a time and do the best I can with what I have to deal with. I let my medical team do what they do best, and I do what they want as far as my treatment goes, until I feel the need to question them. I put all my energy (fight) into making the very best of my time with my huband and family. We are closer than ever and in many ways we are just making the best of a situation that we never thought about happening. No one is ever ready for it but I refuse to give one ounce of my energy to anything negative. Deb

[storm]

Deb I recon you are paranoid yeap, we all have various touches of it, However your present state paranoia sounds OK, actually your a bit on the normal side. Sounds as though you have end up being frazzled dealing with death, the loss, your grief the whole bit, become extra sensitive fed up. Recon you have every right to include a bit of paranoia if it does surface its just an overall part and it passes and its OK to have and experience - adds character & depth. Friends most are mainly helpless - they do not know how to handle your death sentence, (we as society have sanitised death placed it at arms length) how to make it all right its scary for them and you end up being helping them to be OK with you Organise them to do things for you palliavtive chemo - this is a crap outcome for you. I too would like to make it OK for you but that would "hold you psycologically & you cant move though all the emotions that come My history - my partner has a brain tumour removed Feb 2011 -pathology came back grade 4 GBM - life really sucks. We talk she teaches me and gets me back on track when I wander off. She just wants and needs to be listened to be acklowdged and she goes deep sometimes fragile with the chemo she makes it OK for me though. I talk to Andrew too, we talk good crap, he is good value as are others on this site - i see you are friends with him Hugs Deb Geoff

[exhausted]

Dear Deb if you are paranoid I will have to join your club. My husband is on the same GBM rollercoaster and I am begining to be very selective in who I even give the chance to talk to me as I am so sick of the keep positive and its amazing what they can do these days bulls**t. Not to mention the "have you heard of or tried" the asparagus, apricot kernel, paw paw or anything else brigade. Living in the moment and enjoying anything and everything as much as we can is all we can do. I wish people would get that. Cheers Terese.

[exhausted]

Dear Deb if you are paranoid I will have to join your club. My husband is on the same GBM rollercoaster and I am begining to be very selective in who I even give the chance to talk to me as I am so sick of the keep positive and its amazing what they can do these days bulls**t. Not to mention the "have you heard of or tried" the asparagus, apricot kernel, paw paw or anything else brigade. Living in the moment and enjoying anything and everything as much as we can is all we can do. I wish people would get that. Cheers Terese.

[Deb1960]

Hello Terese, Thank you for your post, I am having a very hard time at the moment, the last 3 days have been black to say the least. I am so understanding what you are saying, and so very tired of feeling like I have to justify my attitude. Like you, we do the best we can with the deck we have been dealt. The latest one is that you look a lot better than I thought you would, what the hell am I meant to look like, climb inside my body folks and you would never say that again. And yes, to all the stay positive folks out there this is a very negative conversation but guess what? Somedays I am negative, tired and so over this shit and if I want to indulge myself in a dose of the "negs" I damn well will. Today it is 6 months since they found my cancer, (by accident) & tomorrow I turn 51. Tomorrow I will dose myself with as many painkillers as it takes to have a good day with the people I love and who do understand and support me fully, they are the people who help me get past these dark days, every single one of them has lost a loved one to cancer, they do know where I am coming from and are my support system and I love each and everyone of them for not doing the stay positive, have you tried this or that crap, they just accept fully that I will not beat this and they don't live in fantasy land. I wish you and your husband the very best days you can have and hope that you too are making the best of your time and building wonderful memories together like we are. Deb

[Mel]

Hey Deb, I am 25, I was diagnosed in May 2011 with cervical cancer. I can relate to what you are saying with the ‘I'm sorry, stay positive and everything will be ok’ talk from certain friends when at the time we had no idea how extensive the cancer may be. I didn’t want to shut my closest friends out of my life because they didn’t know how to talk to me so I simply told them to stop saying that because they base that on no facts and it doesn’t make me feel better, in fact it makes me feel worse. Even my dad would try tell me it will be ok but it was because he was so scared and upset himself he just didn’t want to see me suffer. Anyway since I told everyone how I really feel when they say that rubbish they don’t do it anymore. It doesn’t mean you are negative or paranoid it just means you are realistic. You still appreciate life and the time you have together and if you didn’t be realistic about the situation then you will find it harder I think to cope. Enjoy your time.

[samex]

Just started reading this thead. I am a lucky one who seems to have survived and every day I am grateful for this but I have lost 3 very dear friends just before , during and just after my own diagnosis and treatment. One of my most poignant moments was at a Christmas do with a group of very close and old friends. I had been on treatment for about 3 months and a friend (our best man) had so far endured 2 years of treatment for lung cancer (non-smoker).He called me his chemo buddy. The boys were planning a road trip and my friend very quietly said "don't leave it too long." I think I was the only one who heard him or perhaps I was just sensitive to these type of statements. My husband, who really never conceeded that our friend was dieing, later stated that he probably had a year or so. When I urged him to hurry up and organise the trip he thought that I was being paranoid. Our friend died 6 weeks after their trip. My husband actually conceeded that he was glad that I forced him to organise the trip as our friend lived a considerable distance away and it was the last time he saw him. Perhaps it is paranoia or I believe it is being realistic. As I said, I am lucky but I hope that I am of some comfort(?) to those whose outlook is not as rosey. I have always felt that if I hadn't heard those words, the trip may not have taken place and they would all have lived with "what ifs". Deb, I hope you had a fine birthday and maybe this is the time to surround yourdelf with those who in some way, get it. Take care, Samex

[oldhippy]

Well, if your paranoid, so am I. The bright cheery optimistic lets totally ignore reality brigade are driving me NUTS!!!!! Short of doing a bolt, (tempting, just head for the bush) how can you tell them to shut up? - your the one whose got the (insert data here) chance of dying, and we have to bloody well worry about....wait for it......hurting other peoples feelings! Andrew the oldhippy.

[SILLY]

I won't say I am positive or negative. I get what you are saying. My cancer,adenoid cystic carcinoma, is not curable. Most who get it die from it ,unless they die from something elsedon't sound in the meantime. Recurrences and metasteses are common but it is mostly slow in its progression.It is unpredictable and can speed up any time. Going through side effects of surgery and /or radiation or chemo for many apart from recurrences and/or metasteses mean that for some it will never be alright.This is apart from the knowledge that some know that they will not survive as long as others. You sound more frustrated than paranoid to me. Some people will never understand and some genuinely think they are helping even if their commments are inane to you. To be honest I am not sure that anything I said is at all helpful ,especially if you are receiving palliative care. Perhaps only those who are at that point can really comprehend that reality.

[oldhippy]

Dont know about the frustration bit - its not worth chucking a hissy fit over, its more annoying than anything else. The "niceness" of it all grates - is this the time for social rituals? - I think not. I have lung cancer, long term (ie, 5 years) survival rate is 4% so I aint kidding anyone, least of all myself. Chemo sucks, there will come a time when its not worth the effort and thats it. Or a dose of the flu gets me - already battling the common cold! Saying anything helpful? - you did, as do most people - your raising it for discussion, as Storm said, we face the great taboo - ie, dying. I am ok about it, accept my fate. Dont know how the rest of the trip will be, all I can do is wait and see and speculate/talk crap with others in the same situation. So, life is still OK, hope it continues that way for as long as possible. Week after chemo aint nice, but get some good time in exchange - fair enough, its the only card in the deck anyway. Andrew the oldhippy

[SILLY]

Sorry ,Old Hippy, to read that your prognosis is not at all good.

[oldhippy]

Dying? - Its cool, just the way it is. And I am getting bloody confused again on the thread and persons, this site is a pig to use. No offense meant, not meaning to be deep and meaningful, no hot buttons intentionally poked with a pointy stick, was originally replying to debs post re paranoia...how it got to here, no idea really..... Andrew the oldhippy.

[#17]

Those who tell you that everything will be alright I find have not been on the receiving end of this nasty in body complaint. When you attend one of these workshops they have to stick to a set line and smile all the time,"We have to be positive" is their only approach.Have a look at the Cancer Westernaustralia web site and see how they look at the problem and then ask the other states why they don't have simular programs, how do I know, family has used it. Orgone

[#18]

carefull old hippy, you must be positive Orgone

[oldhippy]

Orgone - me, not positive - dont make me paranoid! Andrew the old hippy

[Bernie]

Hello, No, you are not paranoid and no not everyone survives cancer and those that do like in my husbands case, get through each test every three months just to make sure it has not reared its ugly head again! I have seen how cancer takes away a loved one, not once but twicein my immediate family and it is as if that once they are no longer in your life, they are forgotten by everyone but those who mourn them the same date every year, after year, after year.... My sister Clare was 34 (35 in the November) when she was diagnosed with bowel cancer in October 1995. Clare had major surgery to remove a large cancerous part of her bowel. All was going well, with the cancer not progressing to any other organs but the Dr's did more follow up tests and found what they said was a lump on her liver...this they found out (or so they thought at the time) was old scar tissue. I remember my sister and my mother getting ready to go out for some christmas shopping when a call came through that a mistake had been made and what was thought to be scar tissue was in fact cancer of the liver and by that time, it had grown and had taken over pretty much both sides of the liver...surgery was ruled out and my sister refused treatment, instead opting for a more healthy way of living with meditation to try and prolong the death sentence she had been given. During the shock on the family at this time, another sister Teresa was diagnosed with lung cancer in early January of 1996. Pockets of tumors were also found in her brain. Being a pallative care nurse, Teresa opted not to have surgery but had treatment to try and shrink the cancer that we again knew was going to take yet another sisters life...this was the harsh reality. I guess the other real reality was, who was going to die first? On the 13th March 1996, after ten short weeks of trying to fit in a lifetime of 'grow old years'Teresa lost her battle...a month after she turned 34. With the loss and mourning of one, we then had to put all our thoughts onto the other who knew her time was going to be up, just a question of when....the life long dreams were no more....this was reality! Clare thought a courageous battle for 41/2 years but refused to give in....I think she chose the date that she was going to die. On the 13th March 2000, four years to the day of Teresa's death, Clare gave up and gave in... To this day, I miss them and I wonder with the technology today, would they have survived? Again Cancer does take..... I hope you don't mind me writing this down...in truth, I have never sat and wrote the words about my sisters in this length before. You are courageous but never paranoid. Even after so many years, I still hold onto the precious memories...a certain song that will make me cry, a son who looks so much like his mother...I hope that when your time does come, there will be those who will have, make and hold onto those special memories of you!