Inside I'm not fine

Inside I’m not fine

Inside I’m not fine I was dx last April, had Mastectomy at beginning of May, since had chemo, radio, now on Arimidex. I thought that I would feel much better than I do, but I now feel worse than I did just after my diagnosis and op. I feel as if a large, black cloud is hanging over me and I can’t shift it. Yesterday I broke down in tears twice, but I don’t know why. My husband wants to look at holidays, but I can’t even think about them. I’ve booked some swimming lessons but now the thought is terrifying me. I can’t even think about work at present, I can’t control myself so how can I supervise others? People tell me how brave I am, and how well I’m coping, but I’m not. They ask me how I am and I say ‘Fine’ or ‘Getting there’ and they tell me how well I look. I may outwardly look OK but inside I feel s**t. My GP asked me if I drink, when I said ‘Yes’, he said ‘Good’. I don’t drink a lot, and when I do it doesn’t make any difference, so there’s no point in giving myself a hangover. I am taking anti-depressants and mild sleeping pills and even though I get to sleep OK, I wake 2 or 3 times and in the mornings I feel shattered. I’m going to see my BC nurse next week for a chat and I’m hoping I can find an answer. I keep trying very hard to be happy and post on the ‘fun’ room now and again but I am so tired of trying. I have read and re-read Dr Peter Harvey’s ‘After the Treatment’ and I don’t seem to have got over the first stage yet, and its nearly 9 months now. I’m depressed, miserable and can’t yet see the light at the end of the tunnel. My husband is kind and patient but he doesn’t know what to say as nothing seems to help, and I even find it hard to have physical contact. I’m sorry if I’m rambling and you’ve heard some of this before, but tonight I am so fed-up.

tunnels and lights HI Granmum
You are certainly not alone in feeling as you do. This is part of the healing process - not that it feels anything remotely like it. Ypu have spent so much of the past 9 months concentrating on your BC and the treatments that ‘you’ have been left behind somewhat. And now they have abated you are left with someone you used to know but has become a bit of a stranger to the ‘you’ you are now.

Steph (5starshiney) once said to me when we were at a similar stage that it was like we had been lifted out of our lives and then just dropped back in as if nothing had happened. But of course a hell of a lot has happened and you need to take time to acknowledge it.

I made the decision to take my own sweet time in returning to normality-learning a lesson from reading of others on these boards who had gone back to work etc too early. I decided to give up thoughts of returning to a stressful job and to look for an easier one. I found one -and although it pays a lot less ,I definitely have much less stress in my life. And having lived for a year on a very reduced income I appreciate having an income at all.

You are, I think ,slightly older than me so you have earned the right in many other ways too to do exactly as you please. I know from my own family that they are just pleased to have me around still and that whatever I want to do is fine by them. I do not have to excuse my actions to anyone.

So -my advice to you is
1 Recuperate first . do gardening, painting, lounging round on the sofa watching daytime tv-anything as long as its not interrupted by treatments
2 Enjoy this time and savour it
3 Plan holidays etc that are what YOU want to do . you dont have to fit in with anyone. This is your year for pleasing yourself-if you have guilt then next year you can go back to what others want.

And keep posting on here - you know it makes sense. :slight_smile:
wynn

Be easy on yourself Hi Granmum

I’m such an oldie on this site (found the site March 2004 though diagnosed Oct 2003) that I still think of you as a newbie. It is very early days for you.

I think as time goes on I look back with fresh understandings of each stage of the time since diagnosis. After treatment finished I was really sure recurrence would come quick and it was hard to plan anything beyond a month ahead…I’m still like that a bit…do I plan a holiday for May which will be after my next check up?

I don’t think I’ll ever be ‘fine’ again. Having breast cancer has been the most devastating thing of my life (so maybe I’ve been lucky and not much that devastating has happened in a pretty prosperous and comparitively happy life). My fear walks alongside me. I used to hate it when people said it gets easier but it does…or at least it gets different…I find I get used to this thing which is at my side; used to the idea that hoping for old age was a given which is now gone… If I could have one wish it would be not to have cancer but…but I only have one life…and this is it and I have to put up with it, do the best I can. celebrate what there is, live gloriously if I can (thanks to 5starshiny for that)

I decided after treatment that I didn’t want to hack full time stressful work any more…and the upside of having a not good prognosis was to get retirement early and years of work meant I’ve got a reasonable pension…and also enjoy the one day a week job I do…my daily life is really pleasant…but the fear still walks alongside me.

I don’t think any of us with cancer is ever ‘fine’ again…that is just one of the cancer myths I’d like to smash.

Take good care.

best wishes

Jane

Hello GranMum Dear Granmum

I was really saddened to read your post and how down you are feeling but remember the feeling of it all being over and knowing I should be feeling ok but didn’t! I am now a year on from chemo and and 17 months from diagnosis (we don’t forget any of these dates do we). And I empathise with your feelings of not wanting to book a holiday - my husband was the same - almost champing at the bit to get back to normal and get a holiday booked. I think it is a man thing really - they seem to be more able to put things into separate compartments. I can remember thinking - will I have enough hair to go on a beach without my wig! And just not really having much enthusiasm for putting myself into a position of vulnerability - I definitely lost a lot of confidence.

It’s like the treatment schedule keeps you spinning along then there is just a black hole. As one consultant said to me after radiotherapy - now we keep our fingers crossed, but I wasn’t very impressed with that advice!!

I hope your breast care nurse is able to give you some help and maybe talk to you about not feeling pressured to return to work.

Take care and keep posting. I hope tomorrow is a better day for you

Love Pamela

So sorry that you’re feeling low I know it sounds trite but it is still very early days (I was dx in March and had surgery going through to the end of June). The psychological aspect of the illness is just as critical as the physical symptoms and we all come to terms with it in our own time - and even when we do it seems that some still get moments of fear and depression - I know I still do. I also think that the time of year doesn’t help - I know I feel down at the beginning of the year until the nights get lighter.

From my personal experience and from reading others’ posts, it WILL get better. When I’m really low I try and think of some positive things every day (however insignificant they may seem to others). Don’t think that you’re being hopeless, just think of it as another facet of this sh***y illness. And keep posting, when I’m low I always get a lot of strength from others on this forum.

Love and Hugs
Anne
xx

— Hi Granmum — My heart goes out to you on reading your letter. What you are feeling is probably the nearest thing to ‘normal’ that there is about this cancer. You voice so much of what we feel and that only those going through it actually understand to the full.

I have just read and responded to a posting from Liverbird, if you read it you will see that she too feels as you do now. We laugh, joke and try and put on a brave face but inside a part of us is changed forever. I feel that only once I accept fully the new stranger who walks beside me calling herself Joy, looking like me etc., will I finally accept that I am no longer the person I was and will hopefully move on to the next stage in this journey. I havn’t got there yet though, so I know what you mean in your letter.

Please don’t be fooled by the jokes and the chit chat. It isn’t that the people posting are confident in their future: they too are frightened inside and need you as you now need us all.

Don’t even try to be as efficient, or hard working as you once were - it is early days. Take time to smell the flowers. The world will not stop if you take time out for yourself. You deserve it. Plan your holiday SLOWLY over a cup of tea, and not as a chore, just to please your husband but knowing that if you find you want to cancel it nearer the time to take out more time for yourself, then you can. Our feelings and moods with this cancer are ever changing and it does get easier but only in its own time. Don’t expect to feel a certain way at a certain stage - we are all different, but we all understand. Much love and BIG BIG HUGS.

Joy xxx

time I think it takes an awful lot longer to get used to our new ‘being’ than we expect. Be extra kind to yourself, don’t beat yourself up for not ‘bouncing back’ as quickly as others (and maybe yourself) think you should. You’ve been through an ordeal that you didn’t expect and couldn’t be prepared for. Lots of learning and assimilating to do.
This is also a really difficult time of year to deal with depression. I remember last year at about this time feeling really finished despite treatment being over,feeling physically great and having no evidence of disease. There was a long thread here where lots of people posted that they felt the same.
I remember trying to focus on every minute as it came along, as Janice Galloway said ‘The trick is to keep breathing’. It seems a bit extreme now but at the time it kept me going (and probably will in the future).
Having a holiday might just do the trick. Going somewhere where nobody knows you’ve been ill and nothing reminds you of the oncology suite is bound to be a good thing!
Thinking of you. x

I know how you feel Hello, I haven’t posted on this site for such a long time but I do occassionally drop in and read the threads, and felt I had to reply to this one.

After six bouts of chemo, I had my second mastectomy last February (the first was two years before). Then onto tamoxifen and regular checks.

I came out of hospital, completed my final teaching practice, graduated, went on holiday and then started a job. All was going well.

Then, around Christmas, I fell apart. I was so depressed. I just couldn’t see the point in going on. I wanted to be the much loved mum who pulled herself through this illness and was treasured by everybody. Instead, I felt that everybody had just forgotten that I had been through this terrible, terrible thing and expected me to get on with things. I felt weak and pathetic. Even a walk to the shops became too much like hard work. I really did just crumple.

My friend, who has MS, was a great source of support. She made me remind myself that life comes a second at a time, and that’s the best way to live it. She got me to look really hard to find good things (and sometimes, believe me, it was hard), and gradually I started to notice small things like the buds coming up, really feeling the softness of my little girl’s skin when she hugged me or sharing in the excitement of my fourteen year old when she went on her first date next week.

It’s not easy. I’m still paranoid about getting secondaries and am waiting for the results of a bone scan to tell me exactly what IS going on with my painful hip. But I think, if I look really really hard, I can glimpse some light, every now and again, and surely that’s better than living in total darkness?

I do agree that this time of year seems to be the worst for me. There’s so little energy about. Is it any wonder that Finland, with so few hours of daylight in the winter, has one of he highest suicide rates in the world?

There now, I have rambled on and made up for not posting for nearly a year. But I feel a bit better now, and hopefully others will empathise with what I am saying.

Deirdre.

Hi Deirdre Sorry to encroach on Granmum’s post…but just to say hi to you Deirde…I’ve often wondered how you were getting on. Hope you’ll continue to post again…how sad am I…I never went away!

very best wishes

Jane

Hello grandmum I just wanted to say I ‘ve felt like this too. My friends booked me a short weekend break in Northern France, by car. This meant I could go home any time if I really wanted too, and was not too far from home and the hospital should I need it. They also said I could cancel at the last minute!
Also we were self catering, so I could live in my PJs if I wanted. This laid-back attitude really helped me, and although I didn’t do much (compared to my old race-about self) I felt so much more confident once I’d done it. It really cheered me up to have something to think about that was not about cancer or hospitals.
Wishing you a lighter heart, and some good nights’ sleep,
love, Helen

— Hi Granmum

I’m so sorry you’re feeling so low, this is the best place to come to for support and no one minds how much you ramble.

I do know what you mean. Despite having a good prognosis, I feel so down and still completely shell shocked. I mentioned this to a couple of people and the reply was ‘well it could have been worse and you’ve only got to have radiotherapy’. Yes I know and I’m so thankful for that but I feel like I’ve been yanked out of my life and thrown down somewhere else and told to get on with it.

The thing is, people don’t want to hear anything but the positive and you can’t blame them can you? I’ve been guilty in the past of saying something trite, I suppose it’s a defence mechanism against hearing anything we can’t deal with.
No one can know how you’re feeling inside unless they’ve experienced it themselves.

I hope your BC nurse can help you. Is there a support group in your area? I joined my one here for the first time last week and they were so lovely.

Best wishes

Love Zebraff
xx

— —I finished 6 x FEC on december 28th. I have had problems with a painful back shoulder and arm since the arm altho’ movement is good. Also I have been pushed into my menopause with all its symptoms including interrupted sleep which makes pain worse. I am now on antidepressants which may be helping. Last week i was admitted for 4 days with an infection due to low blood count so just when I thought I would/should be picking up I have been knocked right back. I cannot do anything useful at present and my husband has to do everything. He also is keen to book a holiday in Feb but I feel unsure- repeat scan on other breast due then.

I know my prognosis is good etc etc BUT I don’t feel like ME any more- tired+++, overweight a bit, no confidence, unable to concentrate,and ANXIOUS++++ ? about what. I suspect some of my complaints are due to the menpause but that doesn’t really help. I too am FED UP. The posts replying to you have been helpful. I guess time heals but Oh I so wish I could be ME again

Here’s a little poem about looking fine and feeling awful:

“How are you?” has a hollow ring.
“I am very well…”
considering.

Granmum I found the end of treatment really hard. I had been able to shift my focus away from the cancer and onto the chemo, mastectomy and radio, and regular contact with the hospital meant that someone was taking care of me. Then suddenly this safety net was taken away, and as someone else has said I was dropped back into normal life again, but it wasn’t the same life that I had before. I didn’t want to buy new clothes in case I didn’t get enough wear out of them, and I suddenly began to panic about recurrence until it became the only thing I could think about. I had difficulty planning for more than a week at a time and I stepped back from my son’s wedding preparations in case I wasn’t going to be there. The fact that this hurt him made me seek help.

My bc nurse arranged for me to have some counselling and it was very helpful. The counsellor explained that she would not be able to take the fear of recurrence away, but she could help me to manage it. I had about 8 1 hour sessions and I found that just discussing my fears with someone outside the situation was very liberating. I would recommend counselling if you’re becoming depressed. I did have anti-depressants, but while they relieved the symptoms, they didn’t tackle the underlying problem. I’m now 3.5 years from diagnosis and in the middle of a university course. I wasn’t going to commit to it in case I didn’t finish, but the counsellor said, ‘You’ll be sick as a parrot if you’re still bouncing around in 10 years time and you didn’t do it !’

Finishing treatment is often ‘crunch’ time - they’ve done what they can, and you have to confront an uncertain future. What you’re feeling is horrible, but if it’s any comfort, it’s very common. Things will get better with time.

Take care, nj

A trouble shared helps others, too! Thank you for your posting,Granmum,. I’m sure you will have found some comfort from all these lovely replies - they have certainly helped me. It is the sharing that helps, and the realisation that you are not alone.
hope you feel better as time goes on.
take care
love, Judy

Thankyou all so much… …for sharing your kind thoughts and experiences, I think I still have a long way to go. I printed out my message and your replies and gave them to my husband to read along with a Cancerbacup message to partners and friends. He read them all, said he did understand how I was feeling which started me off sobbing again. It would be better if I didn’t ‘freeze’ every time he starts to get romantic but one of the worst side effects for me of this blasted disease/treatment/emotion is a loss of libido which has been exacerbated by sex being painful anyway, ( I’ve been checked out by both my GP and the hospital but there is nothing physically wrong to make it painful). My husband is very patient and understanding about this, thank goodness. At the moment I don’t want to venture out on my own, I want to stay within the security of my home, luckily the cold weather is not inviting for going out and about.
Thankyou all again for your comforting words and advice, this site really is a godsend.
Granmum xx

— hI gRANMUM —I don’t know if it helps at all but from your above posting from the words 'It would be better if I didn’t freeze - it could have been me writing the post. Maybe it helps to know that if I am here and understanding and feeling the same, there must be plenty others likewise who may not like to write about these intimate problems.

My partner and I had rocky foundations to start with (he was once my husband) and the only good part of our marriage was the sexual side. Now I really miss that part and worry myself sick that we may not be strong enough to get through all these after effects of the disease, although he has been wonderful during my treatment and is still being supportive during a current fear of treatment that I am having. All these additional, personal problems are something that I am sure WE ALL go through and as you say, This site is a Godsend.

If you think about it, we are all different ages, different personalities, different backgrounds, races, religions, classes in society, etc., etc. and yet we can discuss, disagree and yet continue to feel the common bond that we all have which has been brought about by the terrible diagnosis we or our families have gone through. If I send you BIG BIG hugs, I hope they help.

Love Joy xxx

Granmum I finished treatment in June last year and as much as I tried to enjoy the summer with my kids I spent the whole time teetering around the edge of a black hole and trying not to fall in and never making a great job of it. I was past the cancer treatment but still too close to the cancer itself. In my mind now the cancer walks beside me inside of me carrying it, much more easily. (If I sound ridiculous please ignore me!) It makes me feel sad now to remember how I felt at that time, but it also shows me how far forward I have come too even if I dont always see that.

What Wynn says IS exactly how I felt at the time, just like I had been thrown back in and nothing had changed for anyone else. Wynn, and a few of the others made me feel so much better to know they felt similarly.

We went away last summer and although it was good I struggled thru it, was scared to think about leaving home, worried about even the things I neednt have, and looking back it wasnt the relaxing holiday I thought at the time.

Someone mentioned ‘just keep breathing’ above in this thread. My words were ‘just keep putting one foot in front of the other’ and mentally this was exactly how I was living at the time.

TIME is the only thing which can change how you feel, and it will - apart from some glitches.

Sending you the biggest hug, I’m sure lots of other girls will be along to do the same. I think it takes a stronger person than you realise you are, to put this down in words as you have for everyone to see, but we can all feel how you are feeling.

Take care of yourself and please do those swimming lessons. Thinking about things IS more scary than doing them I have discovered. See how pleased you feel when you have done one, and build tiny steps to feeling better in yourself, it does work.

Steph x