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Hiding emotions from family and friends

User
Posted 11 December 2015 17:54:26(UTC)
Hello , I have recently joined the on line group but have been following tags for some time now which have been so helpful.
Thank you all.
I am 1 year post RT ( usual 37 fractions) and am on the dreaded Zoladex for at least another year.
I was diagnosed last summer with a PSA 33.5 , Gleason 7 .T3A. Post RT levels now 0.2.
4 years ago my PSA was 7.5 but my then GP chose not to refer me. There was no suggestion of a follow up test but owing to 2
under watchful waiting I'm so glad I asked for another test last year.
And bingo - told results through the roof and immediate referral.
I am seeking advice and help now. I had the usual RT side effects and although I worked for 6/7 weeks I was then signed off for 2 months due to fatigue etc.
I thought it would take about 6 months ( ie this summer) to feel back to normal .
But even now I do not. Whilst no longer having fatigue I still feel teary every day and just cannot let what I have been through leave me.
I know it's the HT and I have been continuing with complementary therapy which has been so useful and helpful.
My wife told me that I'm better now and we have to move on. She's been great and is very understanding but she wants us back to normal.
When I told her I cannot wait to be rid of the HT for hot flushes , teariness etc she said " I want you on HT for as long as it takes . I want you with me for as long as possible"
Now I find I have to hide how I feel . There isn't a day when I cannot forget what has happened.
I remain cheerful and have never lost my sense of humour. I keep in contact with another patient , who is a really happy go lucky chap. But even he said that he feels sad very often and hides his emotions from his wife !
Sometimes I feel so alone. I've been so positive through all the treatments and procedures. I'm positive in my daily life. I have good supportive friends. My family have been wonderful.
But still - how long does this go,on for? Will it end when I'm off HT ?
My new GP is excellent and very supportive.
Can anyone give me some advice - please ?

User
Posted 11 December 2015 22:42:44(UTC)
Hi, I am T4 M1N1a, I was diagnosed 14 months ago and have had chemo, RT and have been on Zoladex since diagnosis until it stops working.
I have no idea why I feel like I do, the cancer? Zoladex? Depression about what I will never see or be? No sex for a year and never again? Many more potential reasons, probably a combination of them all.
I have come to the personal conclusion that for me, no good comes out with really sharing how I feel, no one can change anything, I live for each day but I am discovering each day takes a little of what I took for granted the day before.
I had 10 months off work but went back 3 weeks ago, I had hoped that would make me happier with purpose in life but instead it has made me think what's the point of the things I do at work. What was once the be all and end all is now just a waste of my life.
I have not written this for sympathy or advice on my situation as I will just get on with things and keep reality away from those who may or may not want to understand as they can never understand what I feel as they just see it but don't feel it.
I have written this to say to you that it is quite normal to feel what you do. You may feel better by speaking to others and sharing how you feel however similarly you may not. Like you have indicated I have found this forum the best way to share and get things off my chest.
I have not studied the subject of " mindfulness" but I understand that a lot of it is about mentally being in the now, not yesterday or tomorrow and when I can that is how I live my life but just like you there are times mentally dark thoughts come in. I have learnt that this is ok and not beat myself up for feeling sad and letting them in as it is quite understandable to be that way.
What is my silent mantra is that on my death bed, I can not look back to 2015 and beyond with regrets from wasting a day being sad if it was in my gift to get out of it, I know there are days when that was impossible but there are also days when I forcibly have got the sadness away and had a great day.
So............ Be sad when you absolutely need to but if you can get into a better place work as hard as you can to get there, it is possible more than you think.
I have no idea if this will help you but hope it will in some way.
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
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User
Posted 19 December 2015 17:42:47(UTC)

In my work, we refer to 4 levels - sadness/grief, low mood, and then the two types of depression. The differences can be characterised (very generalised) as
- sadness/grief - a response to a known incident; the person knows they are sad and may cry a lot
- low mood - non specific cause but the person finds it hard to see the positives or lift their spirits for more than a short time; the person knows they are low. May be tearful or emotional
- depressed - usually triggered by a known event but the person cannot lift their spirits and doesn't recognise that they are depressed. People who are depressed can be very flat rather than very tearful or emotional
- manic depression - a clinical state, not caused by external factors or events; when stable the person knows that they can go up and down but in episode, does not recognise it

This is a very basic summary and there are other factors /typologies but my point is that most people diagnosed with a life-limiting illness will experience sadness, grief and possibly low mood. For some, the survival instinct kicks in first and it is only once they have got through treatment etc (and often once they have been given the all clear) that their minds allows the grief or low mood in. Generally, they will be rational and can recognise this in themselves.

A smaller number will become depressed instead - this usually needs help from doctors or counsellors etc because they won't know that they are overreacting to things, or behaving irrationally, or having no interest in their surroundings or they cry without knowing why or whatever.

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


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User
Posted 11 December 2015 19:59:37(UTC)

Hi surr33, sorry to hear how you are feeling and I know what you are going through as do tons of other folk on here and I agree with Lyn that you are probably depressed.

I have been on zoladex since Feb this year with another fifteen months to go and the side effects impact on my life quite a bit but I try to remain positive about things. Although I have not had My prostate removed I have loss of libido, feel tired and lethargic all the time, together with the constant hot flushes day and night and the biggest thing is being reduced to tears at the drop of a hat.. Even tv adverts make me blub, happy and sad films have the same effect, reading about other peoples problems makes me sob.

The thing is my wife understands what is happening and between us we lighten up and do not make a song and dance about it, even the RT consultant(female) said I now know what all the women go through with crying at the least thing. I am an honoury woman!!

This is just my take on it Surr33 so please do not be offended by my way of looking at it but I hope you can find a way forward with this and see that you are not alone but we all handle it differently depending on our circumstances.


Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 11 December 2015 19:10:58(UTC)

Sorry Surr33,
I don't think this is simply the hormone treatment - it sounds like you are depressed which is not surprising and is quite common in people diagnosed with cancer.

Please go and talk to your lovely new GP - if need be, copy out what you have written here and take it with you for him/her yo read.

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


User
Posted 11 December 2015 19:45:19(UTC)

Hi really sorry your feeling this way I think we all have dark days fearing the worst bottling our feelings up, try to find if there is a support group near you as being with others in a similar situation and letting it out will help, .Andy

User
Posted 11 December 2015 19:59:37(UTC)

Hi surr33, sorry to hear how you are feeling and I know what you are going through as do tons of other folk on here and I agree with Lyn that you are probably depressed.

I have been on zoladex since Feb this year with another fifteen months to go and the side effects impact on my life quite a bit but I try to remain positive about things. Although I have not had My prostate removed I have loss of libido, feel tired and lethargic all the time, together with the constant hot flushes day and night and the biggest thing is being reduced to tears at the drop of a hat.. Even tv adverts make me blub, happy and sad films have the same effect, reading about other peoples problems makes me sob.

The thing is my wife understands what is happening and between us we lighten up and do not make a song and dance about it, even the RT consultant(female) said I now know what all the women go through with crying at the least thing. I am an honoury woman!!

This is just my take on it Surr33 so please do not be offended by my way of looking at it but I hope you can find a way forward with this and see that you are not alone but we all handle it differently depending on our circumstances.


Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 11 December 2015 21:32:40(UTC)

Thank you all for responding so quickly. I am due to see my doctor next month and will discuss my situation then.
Your comments have been so helpful and it's always good to know ( sadly!) that this situation is not uncommon.
I really have a good life, keep active - play sports, garden ( very therapeutic ) see family and friends. I'm a member of some clubs and have much contact with others. My local cancer support centre is truly fantastic. The staff and volunteers are amazing. Sometimes I chat to other cancer sufferers and their families. My doctor wants me to continue going there and I partake in the therapies available - acupuncture , reflexology and sacro cranial on a regular basis.
I have also spoke to Macmillan and PC Nurses on 2 occasions.
The support you shown today is really great. It's already made me feel better.
I'm so glad that I've joined online - just wish I had earlier. But we all find the right time in the end.
A friend of my wife's husband is now undergoing the same treatment for exactly what I went through last year.
I've been in contact with him and it will be good to be available to help him if he needs support . I may find it beneficial too!
But now I feel more able to continue knowing that really I am not alone.
Thank you , John

User
Posted 11 December 2015 22:33:33(UTC)
Hi john

I think I would be tempted to book an appointment with your doctor this we'd rather than waiting till next month.

It might just be that talking to someone and telling them how you feel will make you feel a little better.
Louise x
User
Posted 11 December 2015 22:42:44(UTC)
Hi, I am T4 M1N1a, I was diagnosed 14 months ago and have had chemo, RT and have been on Zoladex since diagnosis until it stops working.
I have no idea why I feel like I do, the cancer? Zoladex? Depression about what I will never see or be? No sex for a year and never again? Many more potential reasons, probably a combination of them all.
I have come to the personal conclusion that for me, no good comes out with really sharing how I feel, no one can change anything, I live for each day but I am discovering each day takes a little of what I took for granted the day before.
I had 10 months off work but went back 3 weeks ago, I had hoped that would make me happier with purpose in life but instead it has made me think what's the point of the things I do at work. What was once the be all and end all is now just a waste of my life.
I have not written this for sympathy or advice on my situation as I will just get on with things and keep reality away from those who may or may not want to understand as they can never understand what I feel as they just see it but don't feel it.
I have written this to say to you that it is quite normal to feel what you do. You may feel better by speaking to others and sharing how you feel however similarly you may not. Like you have indicated I have found this forum the best way to share and get things off my chest.
I have not studied the subject of " mindfulness" but I understand that a lot of it is about mentally being in the now, not yesterday or tomorrow and when I can that is how I live my life but just like you there are times mentally dark thoughts come in. I have learnt that this is ok and not beat myself up for feeling sad and letting them in as it is quite understandable to be that way.
What is my silent mantra is that on my death bed, I can not look back to 2015 and beyond with regrets from wasting a day being sad if it was in my gift to get out of it, I know there are days when that was impossible but there are also days when I forcibly have got the sadness away and had a great day.
So............ Be sad when you absolutely need to but if you can get into a better place work as hard as you can to get there, it is possible more than you think.
I have no idea if this will help you but hope it will in some way.
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
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User
Posted 12 December 2015 01:10:53(UTC)

Hello surr33
I'm sorry you are feeling the way you are and hope you can get to a place of comfort soon.

I think I have reached a place of calm where after 12 months of just HT and Enzalutamide I no longer worry myself with what might or might not happen. I'm aware that eventually I will have to move onto another treatment and then another until the last one ceases to work.
My PCa is still with me (down from the initial 234 to .03) but I'm under no illusions it will no doubt rise again.
There's not a lot I can do about it other than eat and live healthily and enjoy every day.

Like Irun I don't talk about it much any more to my family and friends unless anything major comes up. I know that they will all be there when I need them.
The only people that can really relate are those on this site or those who have had/are having similar experiences.

I write a journal and put smilies against the good things from the day - it helps me keep smiling.

I still have feelings of sadness about the losses of parts of my life but I know I'd much rather be alive. It's comforting to know support is here on this site for any concerns or advice.

I'm not so good in explaining what I mean and Irun has said most of how I'm also getting through but I do say that once one has got to terms with things and because PCa moves so slowly it is possible the manage ones life and take as much enjoyment from the time left as possible

I hope this helps in some way.

Paul

User
Posted 12 December 2015 07:45:52(UTC)

Again, thanks for the support, comments and suggestions.
I saw my Acupucturist last Wednesday ( finding it helps for the hot flushes ) . He's had years of experience treating PCa patients. We always chat and it's used as counselling too. He told me that the experiences I have are those which he comes across many times. In fact he thinks that because I am prepared to talk about how I fee,l that is beneficial.
It's mainly due to him that I've joined this forum.

Thanks Paul and Kev, I too am finding that I do not want to discuss with others now. I know that there will be support from family and friends if it's required again.

Whilst at work I found massive support from both the company ( in the way I was treated/ helped ) and colleagues.
One chap is early stage PCa ( watchful waiting) long before my diagnosis, and we laugh now about how concerned I was for him and now it's the other way round. 2 others have been discharged for breast cancer. They were so helpful re the scans and RT etc. and their experiences re recovery.

One other was diagnosed with breast cancer after me . She's had chemo and RT and is on Zoladex . We shared our thoughts on many occasions. I know her husband as well. She had the same response from him as I did from my wife..." You're over treatment and better now". She said - " they just don't know how it is - do they?". And we laughed and cried and hugged each other!.
We both think that it's possibly been tougher for them than for us. We know what we are or have been going through. We will ask for help if we need it. They just want us better and life back to normal. And that is a huge responsibility - it will come but in time I guess . And possibly that it is what I find the most difficult.

The one thing I found most difficult to deal with was when after RT people would say to me " you're looking so well" or " I can't believe you have cancer - you don't look like you have ", whilst I was feeling wrecked both emotionally and physically.
It has taken time to get over that and now I find I don't mind anywhere near as much.

So you can see I have sought help. I know that it's a phase I'm going through and I intend to come out it .
You have all given sound advice.
I've altered my diet , really found that interesting and beneficial as well. I've started to learn to draw. I'm finding that very therapeutic and enjoyable. I've joined an over 50's exercise class too. I still try to play tennis when I can.

Wishing you all well and the ability to enjoy life as much as you , whatever connection you have to PCa.

User
Posted 12 December 2015 08:38:45(UTC)

hi peps
yet again some great advice have read them all with interest and understanding

as for living and dealing with the hear and now, wifey said re our house move are we spending to much of our savings, and as I said to her why worry about the savings they where for when I get to retirement age, which now may not happen so lets enjoy what we have while we can, and the rest will look after its self

normally buying anything or making a big decision took me weeks or months, now its is it possible yes it is so lets do it
wife wanted to wait till my chemo ended in January before putting house up for sale, but we haven't it was sold STC within 3days
is someone looking after me with regard to this I don't know, but I am so pleased in what we are doing

it will make life for both of us so much easier, it has taken a lot of worry re the future away from me knowing we will be moving into a bungalow back in the village where we where both born, yep I will no doubt shed buckets when we move out but I will just blame the HT.

out of so much negative stuff that has happened this year we have at least got a BIG positive and something to focus on

regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
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User
Posted 12 December 2015 09:00:37(UTC)

Hello Surr33 and welcome from me too.

The others have said it all really and it's all excellent advice.

The comment about how well you are looking can be very galling can't they,especially when you are still suffering but I suppose people say things like that as they think it is supportive.

As for " You're over treatment and better now". Well that's the same as above. It's people who have no idea whatsover of the churning going on inside, both mentally and physically. They think it helps. I know that it certainly doesn't.

Hopefully life will improve for you, in fact for all of you who have responded with such helpful comments.

We can't control the winds - but we can adjust our sails
User
Posted 19 December 2015 10:48:50(UTC)

The word depressed is mentioned a few times on this site and has caught my attention more than once. One of my extended family members was 'depressed' for years and it caused us all a lot of problems over the years.

I often think that there are two words, 'depressed' and 'sadness' which are often muddled and lumped together as meaning the same thing, but to me I believe they are very different. Is being 'depressed' perhaps a normal part of some people personality, but being 'sad' perhaps is normal to everybody?

For example, when my brother died I was 'sad', I went through a period where my mood changed but within a while I came back to my 'normal self'. So from my simple criteria I do not believe that I suffer as such, from 'depression' but I know that I can be 'sad'! If I make the effort to try to evaluate all of the times I have been 'sad' in my life, I am confident that these events and happenings always happened 'outside of me' and I got over each one in time. I do not believe that 'depression' is the same at all and if an individual suffers from it, it is perhaps a 'normal' part of their own personality?

The other matter to which I can relate to, is the difference between an 'optomistic' and a 'pessimistic' personality. I believe that on balance, I have an 'optimistic' personality, I look forward to the coming day and like to rise early, whereas my relative throughout his life always slept in at every opportunity and was never happy about what the oncoming day would bring.

I have had prostate cancer and it certainly made me 'sad', especially when after the operation I wet the bed and was incontinent for two weeks but my mood got better as I got better and just returned to the 'self' that I like to be.

If I suffered from 'depression' I assume that these dark feelings periods would have been known to me before as part of my normal life and personality? If I was then diagnosed with cancer and the 'depressed' part of my personality came to dominate me I assume that the operation might have been the trigger to my next 'depression period?

I'm very sorry but I do not have the writing skills to explain this very well at all, but I hope I have conveyed something that will stimulate conversation. In any case if any of my views have any validity, just by agreeing or disagreeing with me, would it make any difference to an individual. I doubt it or does insight help in any way?

User
Posted 19 December 2015 14:33:05(UTC)

I do understand what you mean gunwharfman.

There is a strong element of clinical depression in my immediate family (my sister has been on antidepressants for over 40 years) as well as OCD and schizophrenia so I have seen these and their effects on me and the family.
They affect both my maternal and paternal sides of the family so some relatives got a double whammy.

I too have odd periods of sadness or lowness but they don't last long and I can usually come round quite quickly and because of that i did used to get impatient with those family members who appeared to "wallow" in self pity.

That was until I was seriously ill some years ago and had a long recovery period and I learnt what some of them must have felt like so I am more understanding of it now and just thankful that I found the ability to get past it.

I do feel though that when you have a disease like PC it can cause depression because it can have such a long lasting and major effect on your life and future, and that of your wife and children too.
Not just the initial effect of treatment but the constant thought that life will never be the same again. Yes, it's possible to rationalise and say that this life now is better than being dead, but for some the changes are so great and so permanent that it must be very distressing and could easily lead to being depressed.

I do think there is more than one form of depression. The black dog kind that hangs over some people no matter how successful or healthy they are in their lives and then the kind that we on this site are more likely to suffer from which is the result of changes to our lives as well as the effects of treatment

We can't control the winds - but we can adjust our sails
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User
Posted 19 December 2015 17:42:47(UTC)

In my work, we refer to 4 levels - sadness/grief, low mood, and then the two types of depression. The differences can be characterised (very generalised) as
- sadness/grief - a response to a known incident; the person knows they are sad and may cry a lot
- low mood - non specific cause but the person finds it hard to see the positives or lift their spirits for more than a short time; the person knows they are low. May be tearful or emotional
- depressed - usually triggered by a known event but the person cannot lift their spirits and doesn't recognise that they are depressed. People who are depressed can be very flat rather than very tearful or emotional
- manic depression - a clinical state, not caused by external factors or events; when stable the person knows that they can go up and down but in episode, does not recognise it

This is a very basic summary and there are other factors /typologies but my point is that most people diagnosed with a life-limiting illness will experience sadness, grief and possibly low mood. For some, the survival instinct kicks in first and it is only once they have got through treatment etc (and often once they have been given the all clear) that their minds allows the grief or low mood in. Generally, they will be rational and can recognise this in themselves.

A smaller number will become depressed instead - this usually needs help from doctors or counsellors etc because they won't know that they are overreacting to things, or behaving irrationally, or having no interest in their surroundings or they cry without knowing why or whatever.

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


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User
Posted 19 December 2015 21:14:53(UTC)
Lyn,

This is really useful to me. I was beginning to wonder if I was depressed. I'm very tired, still very tearful and fractious. It appears I have a diagnosis of low mood!

I made a decision last week that January was going to be get off your arse and stop feeling sorry for yourself month.

I may even join the gym.*



*not really
User
Posted 20 December 2015 02:28:21(UTC)

Louise, as you know the cause, I would put you in the grieving category. The gym might actually be the best thing you ever did 😀

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


User
Posted 06 January 2016 16:05:09(UTC)

Hi,

I seem to be hitting a few of these pages and came across the very eloquent Sur33. I am a year further than Sur33

on Zoladex (just finished after 2 years), but similar in sentiment.

 

1. Its not some built in depression, its caused by the drug.

2. Plodding is good. Doing things slowly but methodically gives success and a sense of achievement. 

3. Boring is beautiful. There no rule saying you have to be the life and soul of the party. Watching bad films in bed is great.

4. I emailed an old friend and found myself saying "It turned out that I am a tough old s-o-b" after all. I find that a little self-reinforcement is good. 

5. I have my own three-way diagram: sad-angry-frightened. It helps to know where I am are on the diagram. I get very sentimental,

so I spend some time in the sad box.  Again its partly the drug.  

6. There are good days, maybe one a week.

 

Otto

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User
Posted 06 January 2016 16:32:55(UTC)
Just a quick update following my initial plea for guidance and advice mid December.
Firstly I must thank all of you who contacted me . It has meant so much to me and as so many have said before it seems to be that being contact with others in similar positions who can understand what we go through is beneficial .
Amazingly just having had the first replies within the first 12 hours was mind blowing. They were sent to ME in response to how I felt.
And my feeling had changed. No longer did I have the 'Fug' around me. It had gone. I still felt a little sad and teary but no longer alone.
The Fug had gone and is still gone.

I actually feel just so much better ,happier and cheerful. People have commented on how much relaxed I seem.
I still am acutely aware of what I have gone through and still face in the future.

I showed the posts to my sister . She came with me for my biopsy and fiducial implants. So she has shared a little of my travels.
She doesn't think I was/ am depressed but just sad. Sad because something enormous has happened to someone who had always been so fit and healthy.
Never a day in hospital. No previous surgery. No nothing- just good health. And now this.

The important thing is that with your help I have managed to come to terms with so much.
I have not had to resort to further medication , so no new problems with any further side effects etc.
I've done this for myself and I am mighty proud that I have.
And now when I have those sad times all I have to do is think of this support shown to me. And all seems fine again.

I see my GP soon. I shall tell her what has happened, so she might care to share this any other patients in the future.
Now all I have to do is seek referral for ED . No one has spoken to me about this yet. Is this usual ?
Before I really couldn't care less about lack of sex. Now I find I do care . I see that as a good sign..

Otto, thanks for your message. I wish you well. It must be nice being off HT but possibly a little scary.?
Keep in touch and let me know how you get on.

Best regards,

John
User
Posted 06 January 2016 16:40:36(UTC)

What a lovely update - keep on doing what you're doing

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


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Posted 06 January 2016 16:47:25(UTC)

I believe when you first posted Surr33 you were already a year post op? and have hormone treatment?

I'm sure that those members who are also interested in the ED element will be along to advice you but in my opinion I would have thought an enquiry as soon as possible was important, especially now that you are beginning to feel it's something you want to get back.

I know that it's said that exercise using a pump is good for improving blood flow so at the very least I would make enquiries about attending an ED clinic. What's to lose?

I'm so glad that we helped when you needed us most. I often tell new people when welcoming them, that support and encouragement is what we do best.

We might not always have the information somebody needs but we do all have the best interests at heart of the other members on here. After all, we know what it feels like when it's our turn.

Good for you and thank you for the update

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
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Posted 07 January 2016 14:17:54(UTC)

Thanks, John, for a mention. Yes its good stopping HT. And yes it is a bit scary. They say it will take at least six months before I feel better. Then the wait to see if the PSA goes up. Well I am told it will go up to 2 or 3. Then it should stop. If not then well its back in the Tardis, I suppose.

Otto 

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