4 Years on and still **** off!

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Hi all

I was dx in Dec 05 and had all the treatment. Iwas 42 at the tme. Whilst I am of course so grateful I have had no recurrence as yet I am still so angry and sad.

The chemo threw me into an early menopause with all the crap that goes with it and I have no interest in sex whatsoever!. I think every ache and pain is cancer and it’s like mental torture every day.

I am still going to work , looking after the family etc but everyone just thinks it’s all long in the past now and are not up for discussing it!

I just feel cheated out of ten pre menopausal years and am sick of living with the sword of domacles hanging over my head.

My friend who had bc 9 years ago thinks I need to get a grip as she never gave it a second thought - truly - and I just wondered if other feel the way I do.

Really sorry for the whinge and I hope I haven’t upset anyone . . .

Love to all

ALise x

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Hey Alise

There’s a thread called ‘Fear of cancer coming back’ where we’ve been talking about similar!

You’re not alone!

Hazel xx

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Hey Alise your not on your own it took me ages to get to the stage were i have some acceptance and that was only thanks to ace counselling. I too looked at other people who always seemed to be handling it better than me - but hey we’re all different and need different things to help us. Hang on in there.

tiger68 xx

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Hi Alise

Look on the bright side…Your’e alive and cancer free?..things could always be worse if you read some of these posts…hang on to the positives, not the negatives…I know its awful that this has happened to us…but the way I see it…its nothing personal…thats just life…if it can happen to a 16 year old in Worcs…why not us…?..atleast we have had a chance to have a family?..I am a newbie and when I was looking up at the ceiling when they were putting the portocath in…I was staring at a picture of Donald Duck…and I thought hell…if they can do it…so can I…why is my life worth any more than theres?..its not…these things just happen…cancer or no cancer…we are all going to check out one day…hopefully in the distant future…but I guess we can get on with living in the interim…or just wait for that point in the distant future which seems like a waste…I know of someone who survived 40 years after dx
…she died in her 80’s…don’t waste that time…it could be you

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Hi Alise

Someone posted on this forum the following: if it is going to come back it will come back whether I worry or not. If it doesn’t come back I will have wasted all that time worrying. It sounds like a good philosophy to me!

I think you would probably benefit from some counselling though to voice those (understandable) feelings you have. Speaking to family and friends isn’t the answer - even if they allow you to talk about it. You need to talk to someone who isn’t emotionally involved with you so you can explain how you are feeling.

Good luck
Maude xx

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First of all, I don’t think anyone’s whingeing.

Cancer is such a BIG thing to deal with, it’s no wonder we all struggle from time to time.

Thissucks, I think you have made some excellent points in your post. I also think that perhaps we should also count ourselves fortunate to live be living now with this disease and not 20, 30 years ago when there was less that they could do and the the treatments which were around were even more brutal than they are today.

I also think that we need to take comfort from breast cancer’s high profile and the amount of research effort that is being put into finding better treatments, and hopefully, one day, an outright cure.

Yes, there is definitely more that could be done to address certain issues such as libido - a huge, hidden problem.

Yes, it’s hard not to worry about every ache and pain, but you can have secondaries and be symptomless, too (as I was). I’m glad I didn’t dwell on my aches and pains after having them checked out once. They were (and are, they’re not going to go away) rads damage.

I believe being angry doesn’t help unless you can channel it effectively. I hope I’m not sounding glib or offending anyone when I say that I feel that a person who gets through their life without anything seriously bad happening to them or their close family is unusual and very lucky.

We’ve drawn the cancer short straw. There are plenty of others.

Alise, you are right. For everyone else it is the past. Most people don’t understand what a deceitful disease this can be, lurking for years. They are confused by the many, who aided and abetted by the media seem to make ‘full recoveries’ and are given the ‘all clear’ (no such animal, as we know).

I think it’s very normal to feel like this. But I hope it doesn’t last for you, Alise, and that you start to feel - calmer??? Perhaps voicing your fears on here is a step in the right direction.

X to all

S

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Hi Alise

Just take it one day at a time. If you are really worried about something lurking…pay privately for an MRI scan every couple of years. My hubby works with these things and a full body scan could pick up sypmtomless cancers much better than any MRI could and much earlier than an MRI could…and there’s no harm…no radiation…its magnetic…Magnetic resonance imaging…will cost about £800 - £1000…he reckons…re libido…I don’t know what to say…I have not been through it yet…I will be on the meds at 37 which will be sh%t…The woman who was in remission…yes it did come back after 40 years…but thats a life time afterwards…I guess its the feeling of knowing that drives everyone mad…this is how it may or may not happen…for me I would be grateful for a few decades with my children despite that…I guess we need to …not be afraid of dying…whilst enjoying living…very tall order…I know…but thats what it boils down to?..Keep the faith girl…

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hi Alise,
i am 4 years down the line, like you and didn’t think i would need counselling…how wrong could i be!! i am having counselling at the moment and can’t beleive the anger i have been storing up for 4 years. This disease has changed my life and i am angry about it!! counselling is helping and helping me look at other issues in my life.it’s not easy and it doesn’t happen over night, but i am starting to see things a bit clearer.
So go to your Gp tell him/her how you feel and don’t be afraid to ask to help.
something to consider is having counselling through macmillan centre or similar as they will be experienced in helping people through this.
keep positive
marg
xxx

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hello my names lorraine, im 40 and have finished my bc treatment last oct 2009. treatment was chemo, op then radio. i had blood test results last week and they are saying that im going through the menopause…and doctor has refered me to the mineral hospital in bath, for bone density scan. i have been getting aches and pains too, which could be lots of things as we all know. im feeling so fed up,things just keep being thrown at me. and yes i to feel like some people, think that just cos the treatment is over, we should just get on with our lives, but its not as easy as that. i had nearly a year of counselling which did help, but im just not happy.

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Hi Lorraine,

I’m the same as you…40 this year, finished treatment last Nov…Have really rotten menopausal symptoms…Haven’t had the blood test yet but May was mentioned for them as that’ll be a year since my last period. I get really fed up sometimes and find it hard to cope with life in general, some days I am better than others but it is very much an up and down kind of life now…I only had 2 counselling sessions when I finished treatment as I went very wobbly for a time…I’m back at work which is fine when I’m feeling ok, but if I’m not it’s a real task…I suppose it’s going to take time for us to get over this…One lady wrote recently that we have been Cut,Poisoned and burned so it is only natural that we are suffering long after it has all finished…I think it’s ok not too feel happy, and I know most people expect us to move on and get over it…I only hope that someday soon, we turn a corner and things get much easier for us…

Best wishes
Fiona xxxx

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Hi All
Just to add my ha’porth worth. I was diagnosed January 2008, 6.6cm x 4.5 cm triple negative lump! So 6 lots TAC chemo, bi-lateral mastectomy with axillary clearance right side (5 out of 19 nodes with spread into surrounding tissue) then radiotherapy. All done and dusted by September 2008, no further treatment, no tablets no nothing. Thought I was home and dry but last December on a routine visit to my GP I burst into tears. He gave me a piece of paper with questions and tick boxes to fill in then and there. I was well and truly depressed and did not realise it. My GP said I could have tablets or counselling. I opted for the counselling. This had already been suggested to me a couple of times by one of the Macmillan nurses at a local centre I attended occasionaly, she had obviously seen something I was not aware of. My GP agreed that it was probably best I went through them as they were more experienced in dealing with cancer patients. Well, I had four sessions and it was the best thing I ever did. Like a previous post, I had not realised how angry I was, I still don’t really understand exactly who or what I was angry with. My counsellor helped me understand my feelings and showed me how to deal with them and what a difference! I still get moody sometimes, and wish my hair would grow properly and get back to normal, it would also be nice to have eyebrows again, but I am able to chill out now and not let the fear of IT returning dominate my every thought. I also spent nine months last year having numerous scans and tests only to be told my pains in my side and back were probably due to radiation damage and to live with it. Thank God for Ibuprofen!
Best wishes to all
Nonny

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You are really lucky to have a GP who understands the benefit some patients may get from counselling (it’s not for everyone). My GP surgery have major problems with this - they don’t think patients need to see clinical psychologists, despite the fact they’ve had cancer. I was told I “needed to accept the fact you’ve finished the treatment, pick up the treads of your life and get on with it”, yet I was sitting there shaking and in obvious distress. The same surgery are happy to offer psychotherapy for addicts! My oncologist was absolutely furious. The psychologist I saw came to my area from another health board. She said in the other area GPs referred for counselling automatically for anyone who felt they needed it. However, she said in this health authority GPs have major problems with this. The local Maggies Centre told me they get patients there frequently whose GPs have turned down counselling requests.

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Dear Alise, I think that it will be useful to have counselling and work through all the stuff you have talked about. We can hang on to anger and sadness for years and years.Do you really want that?
Somehow we have to work through all the stuff that cancer throws at us and some people find it is the time to really evaluate their lives and perhaps make some changes too.
It is so hard when we have a dx of cancer, but somehow we have to move on and find different ways of living with the notion that it may come back. Worrying is a waste of energy and time. You could explore all these issues with a counsellor and may be very surprised to find that life my evolve differently.
Good Luck and very best wishes
Leadie

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I’m nearly 2 years from dx and know how you feel - no one wants to really talk about it now, they expect you to be over it by now. They want you to be over it too, but it’s not always that easy. That’s why I still come on here, hope it works for you, but if not do talk to someone.

Good luck

Kinden
x

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Hi Alise
your posting really struck a chord with me, 4 years after my diagnosis (in 1997)I was still absolutely furious, but acting on the outside as though everything was fine. I was falling apart on the inside, and had a really bad time for a number of years.
I came to the conclusion, after a long time, that the worst possible scenario would be for it to come back and for me not to have enjoyed the intervening years and that turned my thinking around.
The cancer did come back last summer, but I could honestly say that the years in between have been really good, I had done all sorts of things (including being main carer for my parents before they died, getting my kids from pre-teens to twenty somethings, and trekking in India and Cuba)that have enriched my life. I’ve had and am having a life rich in love.
I do suspect bc will come back again but I see my job as doing everything I can do right now to deal with it and minimise the chance of it recurring, but at the same time, to work on getting my life back, building on my fitness levels, getting back to work (but modified)and having good times.
I’m sorry if this comes across as preachy, I don’t mean it that way - just wanted to tell you that there is a way through it. I have been taking antidepressants for years and am seeing a psychotherapist now because I know where my areas of vulnerability are and I want my life to be good again.
I hope very much that you find your way through this and a way of not allowing this horrible illness to rob you of any more.
take care and be kind to yourself
love, monica xxx

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Hi Ladies,

I’ve just caught up with these posts and find them very positive and may i even say inspiring.

I too am trying to come to terms with cancer,i have alot of raw edges that hopefully will be smoothed over in time,when ive learnt
to have faith in my body again.

One thing that this has taught me is that however much i so want to be in control… i’m not,. and that there is no armour against fate.
Love to all,

Lesleyxx

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Daisyleaf, I just wanted to say I think it’s great that you know your areas of vulnerability. I managed to find mines and worked through them when I was having counselling (I have a lot of issues regarding my sister’s attitude towards my illness and it affected my confidence in a big way). I’ve also taught myself to use CBT to a certain degree and tap into that when I feel a bit stressed.

I made a big step forward over the weekend and agreed with my OH that I now have the confidence to take over more aspects of our business than I have been handling. Last year I took on a bit of voluntary work and I’m now a lot more comfortable when I’m having training in our field; being a volunteer and having to do whatever they need me to do has helped with this. My OH told me I’m really intelligent, but I had just lost my way for a while through BC. I was never really 100% certain I wanted us to be working together, but now I’m enjoying it hugely and love all the new challenges that it’s throwing up for me.

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Hi Cherub
most of my discussions with psychologist have been about one of my sisters and how she has responded to me! this is a lifelong thing though not only bc (although you’d think I developed it to gain attention!)
that sounds like a really positive step forward at the weekend and your OH sounds lovely and very supportive. It is hard to move forward sometimes isn’t it, but oh, when you do, its wonderful.
keep enjoying it
love, monica xxx

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Daisyleaf, funny that, a lot of stuff that came to the fore about my sister was stuff from way back. My sister is older than me and very tall and glamorous. We have very different personalities and as a teenager I was a bit rebellious. My mum would often tell me I would never be like my sister as my sis was very much the blue eyed girl (I think in some respects my mum resented having a fourth child in her 40s). My sister went abroad to work in 2005, but was staying with me on holiday when I was diagnosed - the day before she was due to fly home. She just went off to the airport as if nothing had happened and my OH says he will never forgive her for doing that to me. She has barely come near us since all this blew up, she did come over at the end of my treatment when I was taken into isolation as an emergency. OH had to make her visit me in hospital and when she turned up she just said “oh, don’t you look fat, my friends said you probably would with all the steroids”. All she wanted to do was get off to the hairdressers and when I got out of hospital she decided to go on holiday to see friends 2 days later. I don’t think things will ever be right again and tbh after I had counselling I stopped letting her bother me.

Things got a bit difficult between us in the early 90s as she became very jealous after I gave up my job to go to university full time (“it’s OK for you, you’ve a man to support you, I’m single”). When I finished my degree she told me I was a complete pain in the backside when I was a student. Thing is, she could have gone to college easily, but she chooses to spend all her money on clothes, jewellery and material stuff.