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Chris J's Journey

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User

Posted 04 Feb 2016 at 13:51

Reiki can certainly help I do know that from personal experience following a bungled operation which left me very ill.

When our grandson was in UCLH there was massage therapy available to him and the family and despite the mess he was in after the chemo and RT, a massage would send him off to sleep and he would wake feeling so much better.

Go for it, as you say, what have yo got to lose

We can't control the winds - but we can adjust our sails

User

Posted 04 Feb 2016 at 15:15

Chris,

Sounds just the job.

Enjoy.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 04 Feb 2016 at 17:56

Hi Chris,

I have Reiki at my local hospice, i love it, i don't get any cake http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

Go for it

Don't deny the diagnosis; try to defy the verdict

User

Posted 04 Feb 2016 at 18:26

Reiki and cake life doesn't get any better than that😄

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Feb 2016 at 18:44

Chris,

I was more or less told by my RT team and my GP that I HAD to go my local cancer centre as I finished therapy.
They considered it very beneficial to have 1-1 counselling and also complementary therapy.

I confess that I was very sceptical and was unsure whether I really would go or not. My wife made me go.
How wrong I was. Like you I had a great welcome and have met some wonderful people.

I have had acupuncture and reflexology . However ,the best therapy for me has been Sacro Cranial ( like osteopathy).
The therapists there are brilliant and I do believe I've gained some benefit from going.

Fortunately I feel that I am now at the stage now where I do not need to go as often, but I will always be grateful to them for their care.

John

User

Posted 04 Feb 2016 at 18:52

Chris

go for it and thoroughly enjoy the pampering and cake!

User

Posted 14 Feb 2016 at 01:39

Hi Chris,

My husband has recently been told he has prostate cancer and he is 57. We don't know stage or grade yet as he is working overseas and won't be back for 3 weeks. He is still to have his scans but has already had the biopsy. He decided, prior to diagnosis, that he would not accept surgery, radiotherapy or hormone treatment- no matter the stage. He recently, over 3 years, saw 2 family members die or cancer and effect that treatment had on their quality of life. He is adamant that he is happier with a shorter longevity and a higher quality of life. He also believes, as his symptoms are have minimal impact at this present time, that he will not " disable" himself any earlier than necessary.

However, he is very keen to use alternative treatments such as paw paw leaves, tomatoes and green tea. Unfortunately, he cannot use pomegranate as he has very high blood pressure. He wants to continue to work and live his life without interruption.

I would like your honest opinion about this as you have been incredibly honest about your journey.

Thank you.

P.S. He is a little OCD about cleanliness etc and any chance of incontinence, erectile dysfunction or penile shortening is unacctable to his mind frame. Whilst he had some urinary symptoms, he did not consult the Dr about this. It was merely picked up in a blood test with a PSA 4.02 and a mildly enlarged prostate-32ccc. The Dr's receptionist rang and told me to get him back for a radical prosectemy and referral to oncologist. Additionally, due to work commitments he wil, receive the stage, and do the scans at the end of February, but will not actually receive the grade until the end of March as he refuses to allow this to disrupt his life.

I will support him in everything he does and I am not trying to undermine his decision. I am just wondering if other people wish, at times, they had made this choice.

Thank you.

User

Posted 14 Feb 2016 at 05:33

hi mirellen
I take it then as of yet you are still waiting results, until you receive these then you will not be able to start to even think about treatment

it may take two weeks before you receive the results of the biopsy

whilst he is away I would send for the 'toolkit' off this site, it will help when you discuss treatment
don't jump the gun on treatment options as I did this only to find that my only treatment is hormone therapy

as for making choices I wanted to know as soon as possible ,

http://prostatecanceruk.org/prostate-information/getting-diagnosed/staging

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 14 Feb 2016 at 06:19

Hi Nidge,

The biopsy is back and they told me, via a phone call, to get him back as he had cancer, needed surgery and to see an oncologist. Told me he needed a minimum of 3-4 months off work but no numbers! My husband is stubborn and had already decided his course of action - based on personal beliefs.

I am trying to take it one day at a time but I cannot imagine how he must feel as I am a mess!

Thank you for getting back to me.

PS We are in Oz but from the UK

(We were told 2 weeks for biopsy but heard in 3 days!)

User

Posted 14 Feb 2016 at 07:28

Hi Mirellen
So sorry you both find yourself in this position , truly. You have to remember I'm bipolar and seem to be mostly depressed. This has been made worse by the cancer. It would be good to start your own post so that you will get loads of advice off some truly lovely people. This cancer , can , apparently be cured if you get at it quick enough.
You asked me to be perfectly honest. Am I glad I had surgery ? No. I have spread to bladder and lymph nodes. I'm continent but fully impotent which is actually quite slowly driving me insane. I've been in pain in my abdomen ever since the op. I'm on HT but feel tired and sad and emotional all the time. I have 33 RT ahead which I actually really don't want at all. Probably followed by more hormone therapy and then somewhere down the line Chemo.
I had lots of help from many people but I think what Luther said stuck in my mind most. He said make sure you can look back in 5 yrs and say you did the right thing. At the end of the day I've done this for my family which includes a soon to be six year old boy. I'll know I've tried and I've had to be a "man" , if that's what being a man is. If I was on my own it wouldn't have happened.
Wait till you have the full results , read this site's publications , sit back a while , then go from there. Be guided not rushed. Write EVERYTHING down in a diary.
I wish you both all the best
Chris

If life gives you lemons , then make lemonade

User

Posted 14 Feb 2016 at 09:34

Chris, as usual I read your post with great sadness. Yes, you have "manned" up and I admire you greatly for that. To suffer PC and to be left as you have would be a strain on anyone but to suffer bi-polar as well must be a nightmare.

Did you make the right decision? It was for the little man and that lovely wife of yours so in that respect yes you did. Was it right for you? You've answered that haven't you. If you had been on your own you would have left it. That too would have been a "right" decision because it was yours to make

MIRELLEN, as has already been suggested it would help you more if you started your own conversation because not every member reads everyone else's post.

Nothing can be done for your husband at the moment until you have all the scores. If he is stubborn or has already made his mind up regarding no treatment, well you know him best, and perhaps he'll stick to that.
However, if you have The Toolkit handy and you have read it ahead of his getting home then you will have information that he can base decisions on, assuming he would even look at it of course.

There are also the nurses on here if you want to chat to them and ask them specific questions.

He has low(ish) PSA and a slightly larger prostate but if it hasn't spread there are a number of options available to him, one being Doing nothing at all. This is called Active Surveillance and is offered to men with no spread and cancer contained.

He would have nothing done but regular checkups.

Don't jump the gun by thinking the worst or by researching possible treatments because some of them may not be relevant and you'll just confuse yourself.

At the end of the day, he (and you) has to live with whatever decision he makes, hopefully he will come round to being more amenable to discussing it all.

I know it's a dreadful worry for you because, at the moment, you see it as a life threatening illness and you will understandably want him to do all in his power to get rig of it.

There is no right and wrong answer to what decision to make because each one is personal to us.

I wish you both well in the coming weeks and months. You have found us now and we are here for you if you just want to talk.

All the best - Sandra

We can't control the winds - but we can adjust our sails

User

Posted 14 Feb 2016 at 14:17

Hi Mirellen

I know exactly where your OH is coming from. It's a long time ago now but I saw my father die of prostate cancer in 1971 and it was painful and undignified. I can also fully understand his concerns about incontinence and I have a fear of this as well to the point where I have often thought I would rather be dead than suffer that indignity.

But let me put the other point of view. The first is to recognise that forums such as these, helpful and supportive though they are, might often give a slightly skewed view of how likely any set of given side effects are. The analogy I often make is with forums about certain makes of car - people will generally only seek advice if something has gone badly wrong. It would be unusual for somebody to say "I've had treatment for prostate cancer and, you know what, it was an absolute breeze."

My best example is my older brother who was diagnosed 3 years ago. He put off going for a PSA test, despite having symptoms, for quite a long time because he felt he simply could not face treatment and, in particular, the side effects. Well my sister in law eventually hauled him off to the GP - he was diagnosed with a Gleason 9 cancer - aggressive but, mercifully, contained within the prostate capsule. He has had 20 months hormone treatment, High Dose Rate Temporary brachytherapy topped up with 15 sessions of External Beam Radiotherapy. He is now in excellent health and his last PSA test was in the undetectable range. He had side effects but only in line with what is normal and has come through the whole process very well indeed. You would probably not read about a case like my brother because his treatment was normal. He had some breast tenderness from the HT, a bit of bowel urgency and a bit of difficulty peeing after the brachytherapy. All were successfully dealt with by tweaks to diet and some medication and all have gone now.

So my message would be - don't take any hard and fast decisions - have a good think and read the excellent toolkit that this charity provides.

All the very best to you and your husband.

Pete

User

Posted 14 Feb 2016 at 15:15

Hi Mirellen,

At the moment I would assume your other half will be processing the news. I remember going to see the oncologist for my results still thinking I would be told it would be something other than cancer. Even though I had prepared myself for bad news it was still a heart stopping moment. Life is a little on hold from that moment until the MRI and bone scan were done. It is only then that a clearer clinical picture can be reported and the treatment options explained. With that in mind the receptionist is being a bit previous and without wanting to sound too blunt it isn't her job to decide on treatment. And the reality is that any health professional should only define the clinical picture and what treatment will be suitable.The decision lies solely with your partner. No one can drag him kicking and screaming to an operating theatre or a cancer treatment centre.

It must be awful for family to hear the news. For me it was only when all the clinical picture was presented that I sat down with my good lady and talked about the options and looked at how it would affect us. She came to the meetings with the surgeons and oncologist so had as much information as me. I remember one surgeon saying it wasn't the people who choose a treatment that was a concern for him but the ones who are in denial and choose to do nothing.

At the moment the advice to read the tool kit and inform yourself of the terminology and options. It might be good to start a thread of your own so others may see your posts and offer support.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 21 Feb 2016 at 04:44

Dear Everyone,

Thank you so much for all your replies. Yes, we are absolutely devastated but not surprised. Each of us had a sense that something was not right. My husband did not say anything but has been in a "fix it" mode for a few months - very unlike him! I having been watching him since April last year and have been concerned. He has appeared more lethargic, "faded "and lacking in strength. I originally put it down to aging but, after a holiday in July, I knew something was wrong. I just had a sense of impending doom and loss. I never considered prostate cancer although I knew there were issues. On 2 separate occasions, I accidently walked into the toilet, whilst he was there, and saw blood on the toilet bowl. My husband, to this day, continues to deny that this occurred!

He is very resigned to his fate but not fatalistic. He cannot cope with illness and all the side effects that might occur,. He has an intense belief in using alternative/natural treatments and refuses to put "poisons" into his body. That is not to say that he is healthy, by any means. He drinks alcohol daily - a life style choice that he enjoys - but is very "pro" natural foods - no jars or tins of food etc. My husband is also incredibly impatient and finds it a chore to attend appointments. We meet with the Doctor to receive the full biopsy results - which I was not given on the telephone - and have the CT and Bone Scan which is booked on the same day. He is only home for a week and then flies out for work again. He refuses to stay to get those results so we won't have a definitive answer until the beginning of April. He is unconcerned by the wait as he states that it will not affect his decision. He has already told me that he is not running to appointments every time he comes home so "don't book anything".

I hadn't cried once since we were told. I kept everything on an intellectual level and researched all stages, grades, treatments, life expectancies etc. I have struggled to find research on non treatment of advanced prostate cancer whereby the patient has not received any conventional treatment. I may be jumping the gun but my husband has every symptom of advanced cancer, including back ache and stiffness, for several years. In his doctor's notes he has been questioning unexplained lethargy etc. since 2012. He even asked for his testosterone levels to be checked. Maybe many of these symptoms are old age though (57) and I am being pessimistic. Last night, the full impact hit me and I cried for me - my husband is the love of my life! I have been with him more than half my life (I am 52). I don't want to live without him! I don't want him to finish his life now and lose all his future dreams and plans. I don't want this to be real. I want it to disappear and just be one awful dream! I am not sure we can do this again. In 3 years we have lost his mother and brother (56) (cancer), my mother(70) and father (74), 2 aunts and 2 uncles. Our son had a major car accident last year, that was initially reported as a fatality, but thank goodness he made it! Our daughter is just 12 years and we have not told her yet as she is struggling with her friend's diagnosis.

I am ashamed to feel this though as a close friend's daughter(9) has been diagnosed with brain cancer and within 2 weeks she is diagnosed, had surgery, become brain damaged, told surgery was unsuccessful anyhow and is now dying! This is all happening as my friend cares for her brother who is dying from liver cancer(approx. 3 months left) and his son(17) has been given 12 months to live because of brain cancer also. They have discovered a gene in the family and my friend has a 3 month wait to discover whether her other 2 children have the gene also!!! (The brother's daughter died of a brain tumour, also at 9 years ,but the link to the gene has just been made!) I have no right to be this lost as we have had a life! These poor children have not had a chance!

User

Posted 21 Feb 2016 at 09:10

Hello Mirellen again.

Firstly you have every "right" to feel as you do, it's normal and natural, just as it is to wish that it is all a bad dream and that you'll wake up and life will be as it was before.

My own daughter had aggressive bowel cancer but survived.

While she was going through her treatment my sister's daughter,only four years older than mine, was diagnosed with lung cancer but didn't make it.

I felt such guilt that my daughter had survived and hers didn't. I visit my sister frequently as she has serious health issues of her own and we talk about her girl and laugh about different things that happened and I still feel that guilt because my daughter is still here to laugh with.
I can't control that feeling and yet there is no logical reason why I should feel it. My niece smoked heavily and had already had DVT problems

The despair you are currently feeling is partly because you have no control over the situation and this waiting to find out is one of the hardest things to go through and partly because all around you are people who are also suffering and you can do nothing about that. You are also offering emotional support to the rest of your family, especially a 12 year old who knows her friend will not survive.

None of us can wave a magic wand and make it better for you, or ourselves, come to that. We just have to do the best we can. Because you are supporting others it's easy to forget that you need support too.
If you don't have a good friend you can offload to, and want something other than us, then could you ask your GP to recommend counselling for a while to get you over this current hurdle. Talking really does help.

Try not to look at the gloomier aspects of your husband's attitude to his cancer because you and he haven't yet got all the facts. It does look serious but until you know you can't be certain.

You love him to bits and that makes it harder.

Could I be a little harsh here and tell you to point out to him that this isn't just about him is it. It's about doing the best he can for you and your young daughter and your son.

It may be that he is so caught up in what is happening to him that he hasn't thought about the rest of you. Easily done, after all, he is the one facing possible long term side effects of any treatment.

I know you would rather have him, warts and all, than not have him but it will be a hard job to convince him you'll love him no matter what happens in the future.
All your hopes and dreams are currently shattered but every milestone covered with treatment becomes the new normal.

Did you get the toolkit from here? Have you run any worries past the nurses on here, they are at least medical people you have direct access to without making an appointment at the GPs.
Try not to investigate online too much as some of the info will just not be relevant.

I do feel for you as do we all and to a great extent we have all felt what you are going through now so we do understand.

Edited by member 21 Feb 2016 at 10:22 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 21 Feb 2016 at 22:03

Mirellen, it would be much better if you started your own thread - we could all then copy and paste our replies to it and delete them from Chris's.

You mention wondering what happens to a man who does nothing or tries to use only 'alternative' treatments. Read up on what happened to Steve Jobs, a man for whom money was no object but who rejected proper treatment in the belief that natural remedies would cure him. He died. My father-in-law refused treatment because he didn't fancy the side effects, especially erectile dysfunction - that was his choice and we had to respect it but he only lived 4 years and dead men can't have sex.

Death from unchecked prostate cancer can be extremely painful and demeaning - bone spread can be excruciating, broken hips or pelvis, constant trips to A&E for urinary retention (or having to resort to a permanent catheter), risk of paralysis from spinal cord compression, organs failing one by one ... I hope the doctors will be able to persuade him that doing something is better than doing nothing. Having said that, doing 'something' might not have to include radical treatment - his PSA is tiny so it might turn out that he is entirely suitable for active surveillance which is almost his dream option from the sound of it ... a PSA test, DRE and scan once a year just to make sure it isn't running rampant through his body.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Feb 2016 at 15:03

Hello All
So the melt-down is in full swing with an awful weekend and some tears , and an utter fear and possible rejection of RT. I've not gone into Diva mode but have insisted I want to see my Onco again about this " non-curative" ( possible waste of time but with all the side-effects) Radiotherapy they are insisting is right for me , despite my perhaps stupid wish to just be left alone whilst I'm feeling relatively ok . Thing is , its unlikely i'll get to see him before planning scan 4th March so we are not sure what to do.
Spent the early morning looking into a second opinion as they have admitted at Southampton that my post-op results are very rare realistically. Spoke to Royal Marsden and UCLH . If the guy I spoke to at the RM is their first point of contact for private care then heaven help their future for private care . Talk about N F I !! Basically told me it would be a minimum of £612 but I would actually have to do ALL the work collecting scan results , blood reports , clinic minutes , histology etc . I explained I might possibly be dead by the time it would take to obtain all that info off an already mightily over-stretched NHS . He wasn't interested.
UCLH were good giving me 2 Uro/Onco specialists secretary's contact details.
I spoke to PCUK specialist nurses today for 40 mins ( sorry if you were trying to get through ). They ( she ) were absolutely fantastic as ever and spent the time to put me on hold whilst they discussed it between themselves for a while. Obviously they cant advise fully but totally understood the predicament I was in with my entire health picture explained. We have ended with Elaine and I receiving some up to date papers on the usefulness / effectiveness of Salvage RT and percent rates of success and positive outcome etc. So we will have some reading next couple of days.
I am torn because I have read many reports from you guys about breezing through RT with very minimal side-effects , but I'm literally shuddering at the thought of 33 fractions and its effects , if its not expected to be curative or even extend my life. I know I think too much . I always have . Ive been told that.
On a different note I attended my fourth ED clinic with a proper doctor today. He has given me 2 Viridal injections to try . He said to go for 30mg straight away , upto a max of 40mg. Don't know when i'll get chance but eager to try as it is part of my journey trying to get some function back. I'll report back. I took the opportunity to raise the daily Cialis issue again , but as with the others he insisted there was very limited evidence that it helps with "natural" recovery any more than a pump does. He said at 8 months things were quite early. He insisted that the notion of natural erections necessary before 12 months is now out-dated , and that recovery can happen up to 36 months later. He also admitted that post-code had a lot to do with treatments , but I have been given a regular prescription for these injections and they are not cheap at all.
So another chapter really , and I'm either going to have to " grow a pair " quite quickly or go with my gut instinct which has never normally failed me tbh.
I had my psa result last week and it was a dandy 0.13 , being held back / reduced by the Bicalutamide 150mg. I'm happy with that obviously.
I hope all your own journeys stay fruitful and hopeful
Thanks
Chris

If life gives you lemons , then make lemonade

User

Posted 22 Feb 2016 at 17:14

Hi Chris,

I don't comment very often on your posts as I feel I can't offer you any practical advice........plus I'm pretty useless at putting things into words!

Just want you to know that you are often in my thoughts and I wish you well whatever decision you and your wife eventually make together.

Best wishes
Luther

User

Posted 22 Feb 2016 at 18:44

Chris,

I'm sorry that you had such a weekend with everything going on for you. If it's any consolation to you , you were not alone with the tears.

I know you're trying to sort out quite a lot at the moment .

Regarding the RT , from my own experience when I went to the RT Centre the staff there were brilliant.

Why don't you see if you can have pre planning meeting with them , ie before 4 March. ?

Given your circumstances I'm sure they'll help you . It'd give you a chance for both you and them to discuss your concerns. If you wait until Thursday week ,then it might all merge into the pre planning meeting.

Anyway good luck with it all.

I think of you and what you're going through .

Keep strong.

John

User

Posted 22 Feb 2016 at 18:50

OOPS! Chris, I pm'd you after I saw a post from you on an other thread but had not read this, so ignore it if it suits.

I hope you can make a decision that all of you can accept as being right in the circumstances?

dave

Do all you can to help yourself, then make the best of your time. :-)

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