Sometimes I Just Need To Talk

[lindiloo]

And as the subject says I'm going to talk. Sometimes instead of saying what you think its easier to write it. I guess I want a 'Bitch' session. I need to write what I feel and I hope others will to. First of all this chat forum is a little dead, maybe instead of writing something and then waiting goodness knows how long for a reply it might be nice to be able to instantly chat. Maybe if more of us use this it will happen? I have pancreatic cancer with secondaries in my liver and spleen. It is a rare cancer and slow growing. There is no treatment. I am going to die. Not today and hopefully not tomorrow, even though I am wellish at the moment its still one day at a time. I thankfully may have a couple of years left. Odd isn't it in the real world you think "when I retire?" Which for me would have been another 25 years. Now that I have an expiry date I'm hoping I get another couple of years. Guess everyone in the same boat thinks the same. Tell you what though I am not going to let this thing get me down while I'm still breathing. I have not cried or gotten angry, just a bit pissed off. Wonder if this is normal, I've known since last July. Shouldn't I be depressed and yelling at this ungrateful world? Shouldn't I be saying to anyone who will listen "WHY ME". Instead I make jokes, I think I prefer being happy and I don't want to drag everyone else around me down. I do get jealous though. Not of everyday healthy people, but of the people I see who have obviously had chemo, the ones who are now bald. I know thats weird and chemo ordinarily is not the thing to be envious of, but chemo at least is something that may cure their cancer. My oncologist says it won't help me. I will only get it as palative care. Great, I have to wait until I'm nearly dead before they even consider it, when it won't help at all, except to make me sicker when I'm on my last legs???? Then I think. "take out the pancreas, I can cope with being a diabetic, take out the spleen, a lot of people live without that, cut away at the liver, it regrows". I know this is not possible and the oncologist has explained why but it still doesn't make the 'want' less. Sometimes I just feel 'lost', can't explain it just feel that way. Its a bit scary when you know it will spread, where will it go next will it kill me faster then. Will the pain be so bad I'll want to take my own life. Will I be so doped to the eyeballs on pain meds that i might as well be dead because I don't know whats going on anyway. And on top of all the me, me, me, stuff. Is your family and friends. What they have to go through, what they have to see. Geez, you could go crackers thinking about it all the time. Guess you just have to carry on, one day at a time and see what tomorrow holds. The cancer society have been very good here in Christchurch. I have looked at all the courses they have and would love to go to some, but they are all during the day. I am still working 60+ hours a week and take enough time off with hospital appointments. But if you are able to go to them then do. You meet people going through the same , and the staff and volunteers make you feel special. I did manage to get to a Look Good Feel Better class while on holiday, it was great. I also have a lady from the society who rings every couple of weeks to see how I am and whether I need anything. I also started a bucket list, I only had two things in it and was telling a friend in england about it via a chat room. From there she contacted friends and workmates from both my jobs, organised a collection, and then they presented me with a hot air balloon ride and a deep sea fishing trip. All without me even getting a hint of suspicion. I was humbled and amazed. Both trips were amazing. Its surprising what you do when when find out you're dying. I didn't even have it in my mind to visit family and friends in Australia. Like most people I couldn't afford it. But I soon enough got priorities right and found the money to go over. I had a great time and it was much more important to do that than paint the kitchen or something similar. If you are able to go do it. Well I didn't expect my 'me' day off to be spent typing but I have. I hope others will write down what they are feeling instead of being to formal. This chat room needs a shake up and more people expressing themselves openly, please be one of the ones to do that. ' Make today your happy day'.

[julie]

Hi Lindiloo
Thanks so much for writing. I'm really sorry to hear your story - you have described your feelings so well and honestly. It sounds as though you have amazing workmates and friends though I can only imagine how lonely it must feel sometimes. I hope you do get some replies here. When you mentioned the scary thoughts of how will your cancer grow, potential for pain etc, I wondered if it would help to meet someone from the palliative care team so they can explain how they can help with pain and other symptoms that can occur? Perhaps your GP or oncologist could arrange this for you.
I also think you have lots to offer others from what you have written eg the importance of 'living with cancer' -humour, diversions, work and doing 'normal' things as well as celebrating the extraordinary things like you have done with your trips etc.
All the best and thanks again
Julie, Cancer Information Nurse

[lindiloo]

Thanks Julie for your reply. I will need palliative care I'm sure in the future, and will definiately be visiting the palliative care team when I start to get pain. Thankfully at the moment I only get little niggles every now and again which are easily controlled by panadol. Not even sure its the cancer causing the niggles. I'm sure everyone is the same as me and thinks 'is that just a pain or is it the cancer?' Anyway went to the oncologist recently he's happy with the way I am at the moment? Sounds odd doesn't, I've got cancer and am going to die eventually from it and he's happy with my condition? I know what he means and just had to have a wee chuckle when he said it. The only thing I find a pain is that I have to wait to go to Gastro to deal with a low blood count. The oncologist said, when I mentioned it that they will deal with it as they started with it. Gosh are we standing on each other toes is someone going to throw their toys out of the cot. Now I've got to wait to get appointment then yet more blood tests (I already have them every fortnight) before I might get a blood transfusion, in the mean time I get to drag myself around in a fatigued state. Dragging one foot in front of the other feeling like shit working 12 hours a day with a bloody smile painted on my face and every time someone says 'how are you?' I just say 'fine thanks, yourself?' Sometimes you just wanna say 'I feel like crap and I've been asked that same question 100 times today and you get to be the unfortunate one I punch.' haha Just kidding but I'm sure you know what I mean. But when I finally get home I look at my lazy boy chair lovingly as I come inside, do what I have to then crash. I love my lazy boy, much more comfortable than my bed. I'm sure you have all experienced 'nana naps' well I have what I call nana comas. No little 10 minutes naps here and there, I'm out for the count. The house could fall down around me and I wouldn't wake up. My 30kg dog jumped on my lap one night and as you can imagine it hurts when she does that when I'm awake, but not that night. I was told she took a running leap and landed straight in my lap and fell asleep, I didn't even stir, not for a good 3 hours. And I think I only woke up then cause someone was telling me to wake up its bedtime???? Well I guess I've had my 'talk' for the day. It would be nice if someone else would write about how they are feeling about this crazy old world we live in. It doesn't have to make sense just getting if off your mind and onto paper (or screen in this case) can make you feel a whole lot better. "Once you choose hope, anythings possible"

[julie]

Hi again Lindiloo,
Good to hear from you again. The fatigue sounds really bad for you - I hope you've managed to get your blood tests and maybe a transfusion? That can really make a difference. Reading your messages reminds me of Kris Carr who wrote a great book 'Crazy Sexy Cancer Survivor' which we have in our library here - honest, upfront and with great humour. We can lend it to you if you want - just email info@cancersoc.org.nz and we'll post to you. I also thought og you when I was reading an article yesterday - came across it by chance when searching for something else - that's the Internet for you - it's a transcript of an ABC (Australia) programme called Life Sentence - interviews with three people and their approach to living with life threatening illness - if you're interested it's at www.abc.net.au/compass/s1708257.htm
Have a good weekend
Best wishes, Julie

[DeanF]

Hi Lindiloo, how you doing?

I really enjoyed your posts and am really stumped why nobody apart from Julie has replied. Well I can only hope that you are still there to share this.
In October 08 I called an ambulance as I had crippling pains under my right ribs. After a thorough examination at the local hospital ER, I was scheduled for an urgent colonoscopy and as a result of that I was diagnosed with stage 4 colorectal cancer with spreads to the liver and lungs. I found out then that it was the tumors on the liver that had caused all my pain.
Funny that, I had been told previously by other medicos that I had growths on my liver but that these were benign clusters of blood vessels and nothing to worry about - yeah well not very funny now! My GP had also looked into another issue I had with bleeding but told me that it was "probably piles" but never actually checked. I had got to the stage where I had changed GP's and he had scheduled me in for a colonoscopy about 3 weeks after I caught the ambulance.
So anyway, my wife & I are asleep in the hospital room when we get woken up at 7am by a doctor I don't know and her group of eager student followers, and she thrusts this photo out in front of me. Now I've never really "seen" a cancer tumor before yet as soon as I saw that photo I just knew it was bad and it was. I get the news that I have a primary tumor up me bum and big fat tumors on the liver (14cm, 10cm and 5cm) with a couple of tiny ones on the lungs. I'm then told that given the nature and spread that the cancer is not curable but they will do a colon resection to remove the primary tumor then "manage" the rest with Chemo.
From that moment our lives so much. I went through the Oxiliplatin chemo programme which lasted some 8 months. I then had a period of respite until the old tumor markers started raising their ugly little heads again and tried the secondary chemo Irinotican. I suffered from some severe side effects on the chemo and made the decision to stop the secondary round as I felt it was more a case of putting poison in not getting the cancer out.
It was around this time that I was invited to investigate the possibility of a liver resection. I got to the stage where I had an embolism to the right lobe only to have this go pretty wrong and I then cancelled surgery. I then essentially chose to just get on with life and manage the symptoms with meds and positive thought.
I went to my oncologist yesterday and he told me that in his opinion I have, at best 2 -4 months before my liver will shutdown and I will die.
Since I was diagnosed I to have attempted to put on the big brave face and laugh and joke about my position. I was obvioulsy in some deluded state that hid the fact the everyone kept telling me I was terminal and dying for I just didn't think that way. Right now I feel really angry & pissed off, very confused & scared.I suppose the "funny" side of it has passed and the realities are now kicking in.

[lindiloo]

Hi Julie
Got the book "Crazy Sexy Cancer Survivor' out, thought it was great. She sounds so much like me. Though I don't know if I could change my diet so much the thought of drinking wheatgrass or something else like that makes me gag. But alot of it made sense. Haven't looked at the transcripts yet but will do shortly.

Hi Dean
Thanks for reply, was beginning to think other than the nurses I was talking to myself. Not that that matters I tend to babble and I guess thats my outlet. I have replied to a couple of your posts. Hope they were helpful. Keep up with the positive thoughts, its the only thing we can control.

Hi to everyone who reads this????
Haven't been on here for a while as I am a member of Christchurch City Chorus of Sweet Adelines (barbershop singing for women) and we had been rehearsing for the big national comps in Wellington last weekend. We won which was great, got a medal which I have been wearing every day this week. And showing to everyone, even strangers haha. Guess I'm proud of our achievement. No harm in that I know we worked hard for it.
Finally got my blood transfusion, I ended up ringing gastro and telling them how I was feeling. They were great, got transfusion within four days. Happened to be my birthday but I thought about it positively. What better way to spend a work day, sitting, relaxing, snoozing and reading. Doesn't happen often so decided to make most of it. Though ended up with a shit of a headache next day but got over that. It took a couple of weeks to start feeling the benefits but did eventually. Now my iron levels are going to high 'groan' can't win I tell ya.
Does anyone else hate having to take time off or change their routine to go to a hospital app and then not see your own specialist, but as I call them a 'minion' or 'baby' doctor. Gee, its usually such a waste of time. Here I am talking about how I'm feeling and the such like and I can see he's not listening so I stop mid sentence and say nothing. He eventually looks up and says "I'm just reading your case" WHAT!!!! Shouldn't he have already have done that? Then they say, "We'll leave things as they are, Don't want to change anything without first discussing it with your specialist"??? WASTE OF MY TIME, and all my time is very precious, thank you very much! As we with a best before date know.
Just spent a lovely afternoon with a pile of ex workmates. Our friend from England was over so we thought we'ld all get together for afternoon tea to catch up. Its a great way to spend some free time. The catch up was for her but she presented me with a wonderful memory book. She had gotten everyone to write a little something about me and what I have gotten up to over the years. It was lovely to see everyone remembers my humor and some of the funny things that have happened to me that I had forgotten about. I think that is much better reading than serious and formal. I know some wonderful people. I am very lucky.
Well as much as I would love to keep writing I've run into a time issue. Bugger, never enough hours in a day. So til next time. Keep Strong.

lindiloo

[Gerard]

Hi lindiloo,
Gerard here, I just admire your writings above, you are so strong and wonderful and good on you for sharing your feelings with us all. I to need someone to talk to many times as having any type of cancer is hard to take and when we have been told that we have this we all need good friends and people to talk to, but they have to listen, uninterrupted and get to know how you are really feeling, open yourself up and let it all out, this I have found hard to do as I have no one close to talk to.
I found great fantastic help from my Hospital Social Worker and nurses, my GP staff, the district nurse who was just wonderful and now I am also getting help from a fantastic counsellor as I was also diagnosed with anxiety and depression with a lot of other things to cope with on my own. Your story is a brave inspiration to us all and great encouragement to let things out, don't suppress your feelings and thoughts, but bring them out and lift the wait off your shoulders, let the stress go and this will help a lot. I say this because for years I did not and most men do not, which is very bad and not good for you. Us men can learn a lot from the beauty and emotions of women and how wonderful we all are. I wish you all the best very warmly and if you ever need someone to talk to just ask Julie to give you my phone number if you want a chat.
Warm Regards,
Gerard.

[lindiloo]

Hi All

Thanks Gerard for your wonderful words. It is good to be able to express yourself with no interuption, to just talk, to not get everyone elses opinion on what we are going through. Though these people want to help, sometimes unless you are experiencing it they just don't know. Sometimes you just want to express yourself and not have to look at people in the face because when we see the pity, the sadness, the confussion, the inability to help written all over their faces we clam up and never get how we are feeling out. We don't want to hurt or burden people with our thoughts and hurts. I know there are counsellors out there and they do a brilliant job and when we are in a really bad way we need to see them, but talking here no one can stop you from just saying what you need to and how you need to. I'm pleased you are getting help with your worries at the moment, keep accessing everything you can for as long as you need it.

We are not long on this world and we need to make each and every extra day we have the best we can possibly make it. It doesn't have to be much to make it a good day if sitting and watching a dvd and enjoying it makes you happy, do it. Days don't have to be full of friends, family, doing chores going to appointments getting out and about to make it a good day. Sitting and doing a hobby can be just as fullfilling if you allow it. Some of my best days are just doing what I want with no one around to interrupt my 'me' day as I call them. Though as I still work 'me' days are few and far between haha. Think we all have bad days, but we have to try on put a positive thought on those to. Instead of looking at it as a 'I feel bad' day I try to make it a 'yay I don't have to do the washing' day. Simple idea, but sometimes it works.

I am finally cutting down on my work hours. The opportunity for redundany came up in one of my jobs and I thought I would accept it. It means I get to leave with a pay out, though its not a huge amount, but its certainly more than if I had to leave because I got to sick to work. Instead of 60 hours a week I'll be down to 30 with my other job. I'm going to feel like a lady of leisure I think haha. I'm just looking forward to having free weekends, won't know myself.

Get to have another blood transfussion this week. Funny thing to look forward to, but for a good two months afterwards I feel so much better. Every little bit helps to a, as normal life as possible I say. Best thing is, I get to rest, nap and read all day. As I said eariler make a not so great day into something positive haha.

Went to the dog park this morning. Nothing odd about that I suppose unless I don't have a dog of course haha. But I do. Didn't intend to go as its wet outside actualy it was pouring. Had only meant to take dog with me as I did a quick message, so she could get out of the house for a break as its been raining for days. But the message took us down one of the roads on way to dog park. So I have the dog all excited in the back going (in doggy talk)' We're going to the dog park, We're going to the dog park, We're going to the dog park'. And me up front going 'We're not going to the dog park its to wet". She won, Its was wet and muddy and raining. But we had fun. She ran and found every muddy hole she could and then ran back to tell me about it by rubbing and shaking on me. We didn't stay long but its something I would never have considered doing BC (Before Cancer). Sometimes its fun doing the unexpected. Even though I had to change and dry the dog off when we got home, she was so happy, which made me happy, which made it a good day.

Well time to go and do what is needed. Cuppa tea, sitting on my backside watching a dvd and keeping warm.haha. Have a great day.

Remember, 'Take time to laugh, Its the music of the soul'.

Cheers
lindiloo

[Gerard]

Hi lindiloo,
Wow thanks for the reply, you have made my day and more. You are a great writer, I wished that I could write as well as you. Thanks also for the positive words and inspiration, I have been very depressed of late and although I am on medication for this it does not take it all alway all the time and nor would I want all my emotions dulled by drugs, which I don't normally like to take.

This prostate cancer has taken it's toll on me in many ways and there are times if I wonder if I have done the right thing by having this operation, I have spoken to the wonderful Julie at the Cancer Society help line in Wellington, she is just amazing and has been very supportive and most helpful, I owe her my total heart felt thanks for this, aren't we so lucky to have such great support on the phone from people like her and the other staff at the Cancer Society.
Your words in reply to me to day has cheered me up no end and I thank you for this very much.

There is more to this operation than just removing my prostate and it has been hard to deal with, since the operation I have had bad incontinence which is driving me up the wall, I leak all day and have to use incontinence pads in my underwear and then change them during the day, at night I have to wear under pants and a pad to sleep which I also hate but better than wetting the bed etc. At last I have taken steps to go to a physio to get some help with pelvic floor exercises to help control this incontinence so lets hope that this will help speed up getting some bladder and peeing control back.

This was my first open surgery operation and the first time staying in hospital for an operation as an adult and being cut open and so I did not know what to expect, what went on and how to handle any of it, I was very scared and frightened by the whole experience and it stressed me out and let my emotions out with bursting into tears a few times and I was so overwhelmed by the whole thing but not only while in hospital but also after the operation and when I got home all alone and then what has happened to me really started to hit home. So I was a big mess most of the time but I did seek help, which was the right thing to do.

I feel a real big loss in having this organ removed and having these side effects, I will never be the same again and have what I was born with but hopefully the cancer will be gone. I now await the next PS A reading from my next blood test to see if there is any left, so this is also stressing me out waiting for this. I know that compared to you and many other people I am not so bad off with what I have but I certainly didn't expect this at my age and time of life, thinking that it was just an old mans problem, how wrong that was and many younger men can be detected with this now with the earlier checks if they seek it before the cancer spreads to far.
The loss of my sexual being also greatly depresses and upsets me but over time and maybe with some help I can get this back but again it will never be what it was.
People always treat the sexual well being of men and people in general as it should not be talked about or that it does not matter much or that they just trivialise it, well it does matter and it is just as important to being a human as anything else and it does matter to me.

For the last 4-5 weeks I have felt very yuk and did not want to do much or have any desire to do anything, I do watch some TV and playing some great music which helps and then I have some indoor hobbies and of course there is always the computer and the internet, emails and phone chats. I have lost some friends over this because they did not want to hear how I was feeling and thinking and what was going to happen to me, so you can imagine how I am feeling when one's so called friends don't want to know, so with hardly anyone to talk to apart from nurses, hospital staff, doctor and counsellor and other help lines (who have all been great and a big help) I have felt very much alone to deal with all this.
I have found that coming to the CancerChat web site and reading what other people have had to go through a big help and being able to write to people who understand and then to get a reply back like yours has been very positive for me.

Well must go now, well look at the above I can write as well as you but maybe not as good.
Have a great day and I will take a leaf out of your book and go and do what I enjoy.
Cheers,
Gerard.

[lindiloo]

Hi to all.

Hi Gereald, Sorry its taken a while to reply. I have been running a holiday programme with 30 kids and after 9 hours of kids a day the only thing I'm good for is to sit in my Lazy Boy chair and fall asleep. I do get woken up when its time for bed though???

You really are going through a lot at the moment aren't you. I am so sorry you have lost some friends over this you must be feeling very lonely at times, not a good thing when you are going through so much. I am glad you are getting help with everything. Do you go to a mens group at the cancer society. There will be men there who, even if they don't admit it may be going through the same emotional and worrying time as you. If not perhaps you could ask them if they are considering a group.
People forget that such an operation can have major side effects and that it take take its toll you your body mentally and physically. And the 'C' word (cancer) sends people running a mile. I hope your latest blood tests are good. Its funny how a little bit of blood can hold a lot of answers, be it good or bad. My last ones were both, blood count up after having transfussion, but iron level to high. Can't win. Least I know why I wasn't feeling much better after transfussion. Hopefully iron level should be down a bit next test. Thats the problem with me having transfussions and having liver problems. I need the tranfussion for the blood count but it increases the iron count which is already to high due to the tumors on the liver. As I said 'can't win'.
People do have a habit of trivialising 'taboo' subjects. Think its a defensive response and I'm sure we have all been guilty of it in some way sometime. Which of course doesn't really help when you really need to talk about it. Thats why writing it down and expressing your feelings on chat lines can be great. Loss of your sexual being and incontinence may not seem like much compared to the fact that hopefully the cancer is gone to some people ,but it is important to you. And thats what counts. You prob hear same old line 'don't worry it'll get better' but thats not now and when you are going through it now, thats when it is most important to you.
I have people telling me all the time 'you are looking good'. Wonder what a dying person supposed to look like?? Do they honestly think I am going to go around looking like I'm ready to throw the towel in. Am I going to tell them as I say 'thanks' that I stupidly ate something that disagreed with my disgestion (due to cancer in pancreas ) and say 'I may look good but I've had the shits from a muesli bar for the last 24 hours', no I don't think so. When they say 'gosh you are doing well'. Do I tell them that I spent three hours this morning nauseous and heaving my guts out, 'no', I just say 'yeah not to bad'. Humans are a funny race. We hide all the important things, We have been brought up not to discuss certain things, that its private. And its true who wants to know these things? Except perhaps other people going through the same thing. It just take one person to speak up about one thing and it gets the ball rolling. I went to a group once and a nurse asked if anyone was having trouble with excess wind. No one answered then one lady slowly put her hand up and that was it. The whole group was suddenly talking about farting, it was so funny, no one wanted to say it was a problem. Its a taboo subject (except if your a kid and the loudest and smelliest wins haha) and yet its something we all do.
Going to have to go now. My dog bugging me for a trip to dog park. Animals are great. You can tell them anything and they stil think you are the best. If you don't have one you should consider getting one. Prob not a baby, especially if you not to great at moment. Kittens and puppies take a lot of time and energy. But there are plenty of older dogs and cats looking for homes out there. And they are great company. Mine makes me get out and get fresh air. And its nice having a cat snuggled on your lap purring away.
Remember to keep writing down your thoughts, its not important how its written just so long as you can openly express yourself.

Bye for now
lindiloo