Struggling to come to terms with treatments

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I’m feeling really alone in this and wonder if anyone else is going through or has been through similar emotion?

I just cannot get my head around the fact I need so many awful treatments for cancer, which are going to make me ill and disabled - definitely in the short term, possibly in the long term.

Perhaps I am still in denial, although I don’t see how I can be when this is already a recurrence. But with early stage breast cancer, the fact there are no symptoms is making it so very hard for me to accept treatments which are being given to make me ‘better’. I feel so damn well and I resent being made ill.

My family, friends and medical team don’t seem to have any time for my fears; I’ve been told by all of them I’ll be dead in a few years if I don’t do as I’m told. And I am doing as I’m told, don’t get me wrong. But I resent it.

It’s totally illogical because last time, more than 5 years ago, I delighted to get away with the ‘new’ node-sampling, rather than axillary clearance, which I knew came with a risk of lymphoedema. Now that I have a recurrence in the lymph nodes, they’ve all gone anyway and I find myself wishing that my hospital hadn’t offered sampling because the cancer skipped past the 4 sentinel nodes they took, and settled in another/others. So obviously the whole-hog is a lot safer than picking and choosing treatments cos none of us know how our own particular bastard cells are going to behave or trick the doctors.

I’m sounding really confused, which I am, but just wanted to know if anyone else understands how I’m feeling. I’m just so scared about having my body pumped full of toxic drugs, more so because I’m pregnant and subjecting my baby to the same horrors as me.

Jane

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Hi Jane

I have not experienced pregnancy whilst coping with treatments,(I had to abandon IVF) so I can’t identify with this …sorry, but I do symphathise and imagine it must be extremely worrying. I only have my body to think about and that’s bad enough. The treatments and their side effects are at best horrific and it’s understandable that you are feeling resentful, surely made worse by the fact that you have experienced it all before.

I really wanted to post to say that I had all my nodes removed and my cancer still came back, so try not to beat yourself up about what may or may not have happened, you did what you considered to be the best at the time and who knows perhaps you did save yourself from getting lymphoedema.

Take care and I really hope that you find the strength to cope with whatever comes your way,

Take care
Nicola xx

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Hi Jane,
I think with family and friends we all feel alone with this dreadful breast cancer, although l have very good family and friends, l feel they do not really understand how l feel.

Yes l know l have to have chemo, but sometimes l get a bit fed up with people telling me this is for the best and l have no option but to have the treatment. It is not as though l don’t want it! I hate the thought this poison is going into my, what l considered a healthy body! We are having to put our bodies through some dreadful treatment to have any hope of getting through this.

In your case it must be so much worse, to be carrying a child, and having chemo, obviously your onc has spoken about the chemo and the unborn baby, and they would not offer chemo if there was any chance it could cause a problem with the baby. But we still worry, because that is what mums do!

We wouldn’t be natural if we didn’t worry, l worry about me, and l am 63, but l still want to live for many years, so many things to do.
So for you in your situation with your cute little one and the unborn child, you must be in a turmoil. Yet you come over being very level headed, so if you are having a little wobble or a big wobble then you are allowed.

When l was first diagnosed someone said to me, no matter how supportive your family and friends are, this is your journey, and it will be very lonely. how right they were!

I don’t think you are in denial, l think you are having what we all have, a few wobbly moments!

As they say this is a very emotional rollercoaster we are on!
I think l read somewhere you were having 3 FEC and 3 TAX? l have had 3 FEC and l have not been made ill or disabled! l will be on my 3rd FEC this Friday, and so far l have had a feeling of sickness for the first 3 days, and a rotten taste in my mouth, but l have got up every morning and taken my dogs out for a walk, and gone shopping, so hopefully you will feel ok too! obviously we are all different but l hope the s/e are easy on you.

You resent it as we all do, because it has taken away from us the person we once were, and like us all we like to be in control. And with bc we are no longer in control, but we will be once the treatment is out of the way.

You take care of yourself
Love
Sandra xxx

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Hello Jane,
I have been following you posts and I think I can understand little of how you are feeling, although it must be so much harder when you are pregnant and have a very young child. I think that you are probably around my daughter’s age (30) or younger.
It must be so difficult to cope with all of this horrible dx at your young age, my heart goes out to you.
I can relate to how you feel about family and friends and their reaction, I feel that my family are now getting bored with the fact that I have bc , a while ago on one of the other threads someone called it ‘cancer fatigue’ they seem to tire of hearing about it at times, or so it seems. As much as your family and friends can at times sympathyse with your condition they will never understand how you truely feel, as we all do who have had the bc dx no matter at what stage it may be. I don’t want to have the bl–dy thing but everytime I go to sleep and every time I wake up it’s the first thing that enters my head, it would be great to just be able to get back my normal life before bc but I don’t know if I will ever get back to how I used to feel before , I just hope one day that it’s not the first thing I think of when I open my eyes every morning. I have been very luck to only have a WLE and SNB, I also now know that I will just be having rads and tablets and not chemo.
With all of this it doesn’t matter how many people you have around you it’s still a very lonley journey. They all have your best interests at heart but may not always be able to express how they feel in a way which would be most helpful to you. You have already had so much to put up with, having already had this 5 yrs ago at such a young age it’s not fare for someone so young as yourself to be going through all of this for a second time in your young life.
I am thinking of you and hope all goes well for you in the days ahead
Hugs and best wishes,

Isabelle xxx

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Hi jane,

I can tell from your previous posts how reticent you have been about the treatment, and I can understand totally how your family and friends feel and I am sure that if you were in their position you would be saying the same.

But it is so hard when it is you that is the epicentre, it is your body, your disease, your present and your future. And for you, it is also your baby which must surely make all this even harder. I understand about the feeling well so why make me I’ll? However my absolute fundamental approach from day one has been to throw everything they have at this, even if it would only add a miniscule amount to my chances. However , I don’t have a baby growing in me to consider . I don’t have the pregnancy hormones surging to contend with. You do, and that must make this so difficult.

Although I haven’t struggled with accepting treatment, I have struggled with accepting my diagnosis as I don’t understand how and why this could have happened to me. I feel it’s something that happens to other people and that I have failed somehow on letting it happen to me. Ivsuspect this is just another facet of thedenial you are going through and will take a lot of adjusting to. I think we just have to suspend belief and go with the flow, putting ourselves in the hands of the experts. It’s hard if you have always been in control but it’s just something we have to do,

You are very normal
in feeling these things, breast cancer seems to come with so very many facets to deal with that you are bound to struggle with diferent ones at different times. Be kind to yourself and allow those who love you to support and help you as you come to terms with your dx and the times ahead

Love
vickie

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Ps. Though o have moaned constantly it seems on this forum about chemo, it hasn’t been as bad as I would have expected and I have managed to do and enjoy many things throughout it. It takes z bit of planning and there are hard times but for example today I have had s lie in, been to Blackpool zoo with my sons and husband, had fish and chips on the beach and played on the sand dunes. Then on the way back my husband dropped me off at pictures with my friend. Last night I went yo pictures then for a meal with my family. It’d my good weekend so cram it all in! It’s doable! Xxx

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Bloody iPhone keyboard hence rubbish spelling. Chunky fingers…

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Hi Jane,
The anticipation of treatment is almost the worst part, because everyone is different - some affected in one way some in others. At least you have us to chat to pass the hours before treatment and even on the difficult days during treatment. I’ve had FEC & TAX, Mx, ANC, Hercptin and I’m now on capecitabine and Lapatinib over the last 12 months and I’ve resented every step. I’ve resented having to change my appearance, role in my family, job and worst of all having to turn over all my decisions to a medical team I don’t really like. I know they’re doing a good enough job and giving me the right treatment, but I don’t understand why they can’t speak like normal people. They use words like ‘life prolonging treamtents’ and ‘5 year survival’. It’s like they can’t see that we’re just people, trying to live and aspire to the future.
This is just made doubly difficult for you because of your pregnancy – Congratulations by the way! I bet non of your onc team has told you that!!
The more I go through this horrible experience, the more I learn that there I nothing I could hear or say to make anything any better. The best we can do is be here now. Cuddle your tummy and your baby and just think about how much you love her or him. Take day time naps with your toddler (although mine ALWAYS seems to jab me in my painful exposed ribs). Children are such blessings, I would give anything to feel pregnant again. I think you should keep a little pregnancy diary too. Something that will never have the initials FEC or nausea or anything like that written. Something that’s totally just yours and your babies, so that when they’re born, you have joyful memories of your pregnancy.
I know what you mean about feeling disabled too. Today I have been just so tired and sick. I’ve had to watch my husband do everything today. Laundry, potty training our 2 year old, take our 7 year old on a bike ride, cooking, cleaning, getting school bags ready for tomorrow – and I’ve not been fit to do any of it. Probably sounds great to some people, but on days like this, you feel like your role from life’s been scrubbed out or I feel useless and pointless. I’m so lucky to have such beautiful boys and a loving husband around me, but the sadness of what we have to go through and what’s been taken away from us is unbearable at times. But this, I guess is like the anxiety of treatment, it comes and goes in waves. Sometimes the tide comes in and we get battered a bit more. Sometimes it’s out and can take it on the chin.
Please keep in touch Jane, how many weeks pregnant are you? I would love to stay in touch with you, as I still hope to have children in the future.

Annie xxxxxxxxxxxxxxxxxxxxx

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Hi Jane

One of the reasons bc is so hard to accept is because we don’t feel ill. But it is still killing us. When I found my lump at Christmas I was dying from breast cancer and I didn’t know it. Now I am fighting it. I am not angry at the medical team for putting me through this. I am frustrated that there is not more they can do. I am devastated that my peace of mind has gone and I will have to find ways to live my life with uncertainty. What I do know is that, although I am hating every moment of chemo,I hope my body holds up to everything it has thrown at it and I give myself the best possible chance of seeing my children grow up. debx

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Hi Jane

Sometimes perhaps it’s easier to resent the treatment than the illness, because the treatment is more tangible?
Your feelings are normal because cancer treatment is a horrible thing to have to go through, but it’s doing a good job in giving you the gift of life. It must be harder to understand the extent of the job it is doing when you don’t feel unwell from your cancer. I hope the treatment goes well for you x

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Hi Jane,

It’s nice to see that you’re getting some really good support from your fellow forum users here, but if you need that little bit extra support do give the helpline here a ring as the staff are here to support you through this. Calls are free, lines open M-F 9-5 and Sat 9-2 0808 800 6000.

Take good care,
Jo, Facilitator

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Thank you everyone. I’m glad I’m not completely alone in resenting the treatments, but I’m definitely in the minority and think I still have an awful lot to come to terms with.

I had a phonecall from my onc last Friday out of the blue - although I’d cancelled an appointment and asked not to be told the pathology of the surgery, he rang to tell me. I suspect he thought he was giving me good news, but it was still shocking - 3 sizeable lymph tumours plus cells in the soft tissue. But none in the breast. So the mastectomy was purely for peace of mind. Phew, but still, I’d like my healthy breast back really. I don’t resent the doctor at all, I just resent this situation.

Thanks again, your support is invaluable - I’ve read all your posts several times. xxxx