My first time

Paul1956 · New User Joined: 23 Aug 2008 Posts: 6

OK my name is Paul and I live in the UK.

I have been reading your threads and it shows how brave you all are and how caring.

I would like to post where I am at, because I just want to talk.

Please don't judge me for the way I have decided to handle my illness or try and suggest I get treatment, thank you.

About five years ago a spot was detected on my lung, but apparently this spot had been picked up on xrays many years earlier but I had not been told. The spot had never changed and I had no other symptoms so was told to ignore it.

Fast forward to 6 months ago, when I had a check up and again the spot was detected, but this time the doctors felt sure it was cancer, especially as I had some chest pain, but did not smoke or caugth.

I decided not to take it further, I know that people here will say I am stupid and I must get treatment, but please don't, if you knew me you may understand.

The main reason I did not follow up and get treatment, is because I am already disabled and very week anyway, I suffer from MS and I am just coping with this I could not cope with cemo etc, it would most likely be the end of me. My GP feels much the the same and says it is up to me.

I feel that I am coping well so far, some days are better than others today is a carp day I feel very poorly, I don't know why.

Pain is not a real issue, but I am still scarred not knowing what to expect, and will I be able to continue doing the things I do.

Thanks for taking the time to read, I hope it does not sound like too much of a sob story,

Paul

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 790 Location: UK

Hi, Paul - Thany you for sharing your story and telling us about your decision.

It is your body and what you want to do is of prime importance. I do hope that you will continue to get strong support from your doctor in all your future decisions. Do keep posting to let us know how things are going - we have people in this forum who are very aware of all the problems and who will have ideas that may help.

brainman · Posted: Thu Sep 18, 2008 4:21 pm Post subject: Re: My first time

Hi Paul. I am very sorry about your cancer... and especially that it was not detected sooner. I totally respect your right to make this decision for yourself even though I do not know all that is going into it. As you said, I do not know you. I do know how debilitating MS can be because I have a cousin and a close friend who have MS. And I am not sure if I will not make the same choice if or when my cancer recurs.

I am not sure what you should expect by going without treatment since most people her do take some form of therapy. I would assume that it depend on where it metastasizes.

What I would like to suggest is that you do not know how long you still have to live. What are the things in your "bucket list"? Make whatever time you have meaningful.

Let us join you in this journey. As Vee said, keep posting.

You are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Paul1956 · New User Joined: 23 Aug 2008 Posts: 6

Many thanks for replying, it means a lot to me.

It is so right you should live each day doing what is important to you, be you ill or not, who knows how much time we have. A lot of people don't understand me, but I am an workaholic a great day is working and finding new ways to make a living, I love it. I have tried the holidays thing and after a few hour I want to go home. So in a way I am doing exactly what I want and while I can still do it loving every moment.

I count myself lucky as I work from home along with a friend who is a great support to me. We also have many pets and a fantastic dog who stays with me 24/7 and is a great companion.

I am not so lucky with family they know about my illness but have not even bothered to phone. But I do have some good friends who I often just pop in to say hi, the nice thing is they don't talk about illness just life and what they are up to, which is great.

I am not looking for a cure but I am doing all I can to give my body a chance of defeating this by building up my immune system and not taxing my system. I sat down and thought about my life style and what I eat, I eat junk, next to no veg never any fruit. This I am going to change as from today.

As a child (I am now 50) I was a vegetarian, but about a year before I got MS I started eating meat and have done ever since, I am not suggesting that it is related but I am certainly going to take a close look at what I eat.

I do take natural pain killers although my doctor has given me strong pain killers but as yet I haven't needed them, but if I needed to take them I would.

Another thing I have noticed I only drink about 1Lt of water a day I am sure this is not as much as I should be drinking.

I have got my house in order, I have made a will, even made sure it is know my funeral wishes, I am not being morbid but it makes me feel better knowing things are in order, that is just the way I am.

I have a few regrets in life, but don't we all, I feel I have [i]lived life on the edge[/i] and am better for doing so.

I would like to have my faith in God back, I don't even know how I lost it, I think I feel somehow that I don't deserve it, if that makes sense. To me it feels disrespectful and mercenary to ask for Gods help only when I am sick and disregard him when things are going well.

Talking of cancer, my Grandfather was diagnosed with stomach cancer back in the 1970s, he decided not to have treatment, he lived over 10 more years, he never gave up or went to bed and died in his sleep at 80.
He had a very positive attitude and said when his time was up and the ticket arrived with his name on that it was time to go, he would go. He walked his dog every day but the funny thing was his dog died a few weeks before he did, I somehow feel it effected his will.

I often read these forums a think how brave you all are, and the way you all care about each other is a real eye opener.

I expect I have written too long a post and will not bore you any more. I don't see the benefit of talking cancer with the people around me, it can't be easy for them, it is nice to come here and get things off my chest, no pun intended.

One question, how do you keep this illness from your thought, I don't want my thoughts to be dominated by this, thanks,

Paul Wink

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 790 Location: UK

You have great courage!

Changing your diet is sensible, but don't allow yourself to go to extremes. A well-balanced omniverous diet is what should be sought. Exercise if you can. That is also important for good general health. There are supplements that can be taken to boost the immune system, though much evidence is anecdotal. I use astragalus, and intermittently echinacea. Others will have used different things.

Fluid intake is also something you must consider, but do remember that most foods you eat contain fluids and that this should count in on the minimum daily intake. Water is vital to good function in the body.

As to keeping illness from your thoughts, unfortunately for many, having cancer or having had cancer affects outlook - there is always that underlying fear. However, if you go about your daily life as normal and keep interested in as much as you can, it is easier to ignore the thoughts.

brainman · Posted: Fri Sep 19, 2008 9:27 am Post subject: Re: My first time

Paul, first to answer your last question... it is very hard, next to impossible, to keep cancer from dominating your mind. I am not even sure if I want to. Obviously, if thought about cancer paralyze me, then something needs to be done. I have had times when I had to go to a therapist and even take antidepressants but that is at extreme times. With time and activity it does get easier to set aside thoughts about cancer and to do the things that have to be done. Of course, being in my position that is practically impossible since it seems like I am always on this forum Laughing

As for living one day at a time... Cancer has a way of making us aware of how valuable each day is. I remember hearing those dreadful words from my friend and doctor: "We think you have brain cancer." Time froze for me; I had no past or future. Gradually, both of those things returned to my consciousness but I have never forgotten that I am not guaranteed a tomorrow. Believe it or not, I preached that for years to others but was not fully aware of how true that was until I got cancer.

Live well and happy,
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Paul1956 · New User Joined: 23 Aug 2008 Posts: 6

Thanks for your reply.

Today is sunny but I am not feeling at all sunny. I feel sad today, stupid as it may sound people shouting and laughing outside in the street annoy me I don't know why, I know that I am wrong to feel this way, it is not there fault that I am ill. It just seems that everyone is fine and well but me, strange and I wish I could shake this irrational feeling as it makes no sense.

Deep down I know that I am frightened, I fear both what cancer will do to me, and also is there more I could be doing to fight it.

Sorry to be on a downer today, and thanks for listening,

Paul

brainman · Posted: Sat Sep 20, 2008 10:35 am Post subject: Re: My first time

No problem Paul. We all have been though down times. You are very right in that your feelings are "irrational" but that is not necessarily wrong for this time in your cancer journey. With me, I first found out that the source of those feelings was an angry question: "How dare they be happy and laughing at a time like this?" But eventually I realized that I was just angry: Angry at my cancer, angry at God, angry at myself, angry at life... After identifying these angers, I was better able to move on.

It will take time for you. Without help, you may never really identify the source of your irrational feelings. Nevertheless, with time, you can and will move past them and once more feel the warmth of the sun in your life.

Please, do not apologize about your feelings. As I said, all of us have been there from time to time.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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