demons in my head

Hi Ladies

I have just had my second 3 month check and apart from some odd groin pain which is being monitored i feel pretty good physically.

Unfortunately my head will not move at the same speed:((

I have tried really hard not to focus on cancer, have gone back to work,  resumed normal activities (including normal wifey stuff :)) It has been difficult and really tested a very strong relationship but i think we are getting there:))

Why then do i have to always have doom  in my head??? I am convinced its gonna come back and feel a bit self destructive sometimes !! Spending money or doing what i want is fine coz i had cancer and it might come back :(

 I really feel i want to leave it all behind and move on but how???

Sorry to be negative but am a bit fed up of this today . I said to my fab nurse yesterday i wanted op to get rid of cancer and me move on and forget about it . Each appointment reminds me its not going away and i have to deal that

MOAN OVER :))

Kath xx

Hi Kath, 

Give yourself a break my love!! This is really early days and I think you're expecting far too much of yourself. It's great that you're back to work, feeling pretty good physically, doing things that you've always liked doing and that things are ok on the relationship front - you should give yourself massive credit for those things alone, because set against what you've been through those are really big achievements just a few short months later. 

You say you've tried really hard not to focus on cancer. This is going to sound odd, but perhaps that's the problem - perhaps you should focus on cancer - allow yourself to think about it. I don't mean wallow, but rather than trying to banish it from your mind every time it pops in, let it be there, let yourself think about it for a bit, and then get on with whatever it is you're doing at the time. It's such a huge thing that I don't think it's realistic to think we can just 'forget about it' or somehow pretend it hasn't happened and try and go back to exactly how we were before, however much we might want to. It takes time to adjust to what has happened and to understand the effect it's had on you and the ways in which it has changed you. I know it's hard, but try and be patient and understanding of yourself. Ask yourself if you would expect this of someone else: If someone you knew had been diagnosed with cancer, had to have major surgery and had to go back for check-ups every 12 weeks, would you expect them to be psychologically fine and dandy just six months later? 

Fear of recurrence is SO normal. I don't think there is anyone on this forum who has had cancer who isn't frightened of the possibility of it returning. Why on earth wouldn't you be scared? I'm scared too. I can tell myself I'm cured until I'm sick of the sound of my own voice, but the 'what if' fairy taps away behind my forehead, practically on a daily basis. I've got terrible pain just by my left hip - so bad that sometimes it causes me to limp - my consultant thinks it's adhesions from the surgery but is keeping an eye on it, but last week I felt a small lump in my armpit and I went into meltdown: I was convinced that they hadn't got rid of it after all and it's now all over my lymphatic system and that's me not seeing another Christmas. The lump's gone now - it was just a hormonal cyst so has gone back down - and actually even if it was in my lymphatic system it's far too soon for it to be causing the kind of pain I'm getting, but this kind of rationale doesn't come into the feeling of fear. Kath, we've both had a disease that could have resulted in our 'exit, stage left' - that's really scary - it's perfectly natural that we'd be scared of having it again. Before you have cancer, it's an idea - albeit a scary idea - but it's less concrete, more of a concept. It sounds incredibly obvious, but once you've had cancer, the idea of getting cancer is more of a concrete thing - you know that you can actually get it; it can actually happen to you - being forced to face your own mortality in that way is a very difficult thing and is bound to change you in some ways. Having spoken to friends of mine who have had cancer, it seems that the fear lessens as time goes on: the more good results that you get at check-ups, and the more these accumulate, the more the fear subsides, but it takes a long time. 

As for spending money you haven't got, doing what you want etc etc.... I know what you mean. The way I dealt with this was by turning it on its head a bit - going out and booking a £10K holiday on a credit card is probably not the best idea in the world, but use that impulse to think about things that you do want to do with your life - goals that you can work towards - because one thing that cancer does is bring into pretty sharp focus the fact that we're not going to be around forever, and that if there are things you want to do, best to get on with it. That doesn't mean you should do it in an irresponsible or narcissistic way, but there's nothing wrong with thinking, "I've always wanted to go whale watching in South Africa; I'm going to work towards making it happen, instead of just having it as a vague dream." This is, after all, your life, and you only get one shot at it. I've always wanted to see the Northern Lights and somehow, I've just never got round to it and the last few years I've thought of it more and more as a wispy 'I'd like to do that someday' thing. One thing that cancer has done is made me think well, when is someday? So I went and spoke to a travel agent, found out when the best time of year is to see it, got some brochures and sat down with my husband to work out the cost. Now it's more of a real thing. It's not going to happen next week. But it is going to happen next Spring. This is perhaps something positive that we can get out of cancer - it can never be a good thing to have had cancer, but that doesn't mean we can't use it as a tool to focus on what our lives mean to us and how we want to spend the time we have got on this earth. In order to be able to enjoy that long-term though, it's really important that you allow yourself your feelings now, rather than trying to fight against them. 

With much love, 

Annabel. x

Meant to say - on the 'Post-Treatment' page, in fact I think it's the post below this one, Rosehip has posted a link to an article about 'after cancer' - I think it could really help you to read it. xxx

Hi ladies ....

I have only just finished treatment & can already relate to this .... I'm feeling pretty good already, but I have that same fairy on my shoulder too - I'm also thinking ... What if it hasn't gone .... I'm the same with doing things, holidays etc - wanting to book a holiday to Florida to take my 7 year old little boy... Thinking we would go next May, but then thinking we'll go this oct/nov coz if it comes back, then it's more likely to come back then rather than this side of Xmas.....stupid or sensible ??? I just don't know..... Whatever ... I totally know where you're coming from, & I believe , like Annabel has said with time we will learn to have confidence & trust our bodies more.... Thanks for your post Annabel - it makes perfect sense ... 

love & hugs

Sam

xxxx

Thanks Ladies

On a good day i manage to sort all this in my head but on bad days it all comes out.....

I just think i hate the what ifs and maybes and like to have control of my life. I just get back onto it then the dreaded appointment comes up and i feel right back at square one as if it all just happened yesterday :(

Don't get me wrong the medical staff caring for me are fantastic and always take time to reassure me and I do understand and appreciate their  close monitoring.

I really hope with time the fear does lessen  the trouble is I am also very impatient.!!

You are right though Annabel -  I am hard on myself but I find it difficult to accept being kind to myself is not wallowing!! I would tell a friend exactly what you said but its harder to see for yourself isn't it??

My sister asked what answers i wanted from the doctor as i was very down after my appointment and all i could say is I want him to tell me its not going to come back ! She said he's a doc not God lol ( cheered me up a bit)

I understand your fears with lumps and pain I have been the same .  My initial diagnosis was delayed because of a histopathology blunder and  i am constantly double checking  all  results and fear something being missed.

Critical illness cover means i have no money worries for the first time in my life......need to make more effort to live and enjoy it more consistently   i think!

Enjoy all your planning too and best wishes

Thanks again

Kath xx

Thanks Samantha

Its reassuring to know it makes sense and others feel the same. Annabel always says it in a way that is so clear too :))

Best wishes

Kathxx

Hey Kath - yes I think we can all relate to how you're feeling. Somehow being told it's normal and to be expected doesn't really make it less distressing. Sometimes I want to scream at everybody else's calmness around something that has seriously screwed my life up. It may be 'to be expected', but I certainly wasn't expecting it!

I've mentioned before receiving emotional support and counselling through my local Maggie's Centre and that has helped me a lot (including helping me resist the urge to indulge in my own brand of food related self destructive behaviour). I'd really recommend checking out what help might be in your area - these feelings may go away on their own, but I have recently met people who buried their feelings after treatment and were still struggling years later.

Better out than in! (as my dad used to say in a very different context)

xxx

Hello everyone

Many thanks for your understanding.

Spot on Rosehip - I can see the problem and know its probably normal but its still difficult for me to  to deal with it.

I appreciate your advice about counselling and support  and have looked in my area but everything seems to relate to breast or prostrate cancer and not general groups. My local Jo's group is 50 miles away but i have had wonderful genuine message and phone  support from the leaders there and Rebecca too :)) Thanks Ladies xx

I have also enroled in the macmillan online HOPE course due to start soon. Hopefully will give me a bit of confidence back and reduce the negativity a bit.

Tomorrow is another day..... :))

Best wishes to everyone

Kath xx

Hi Kath, 

If you feel you would like or are in need of extra support, then give your cancer nurse a call, as she/your consultant can refer you to a clinical psychologist. This is stated in the national guidelines as an essential post-cancer service, so whilst they don't shout about it (for financial reasons, I suspect) and you might have to wait a few weeks for the referal to come through, the support should be offered if you ask/push for it. Bear in mind this is guidelines rather than protocol, so they don't 'have' to do it, but having said that it has been in the guidelines since 1999, so they really should have got their arses into gear by now! 

Good luck. 

Love, Annabel. x

I'm a bit further down the post-treatment line than many of you - but the issues are the same! I finally accepted that I needed help and have had counselling at the local hospice weekly since January. It has really helped me talk through all the 'what-ifs' and to put some kind of perspective on my treatment and recovery. It hasn't been easy, but it really is helping!

Ceri xx