Not coping well with ongoing treatment

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I feel guilty and indulgent for posting this, but I wonder if anyone has any words of wisdom to help me through a really sticky patch in my treatment.

I had my diagnosis of a regional recurrence June 2010, have since had mx and lymph clearance, 4xAC while pregnant, further surgery to nodes, given birth to a seemingly healthy daughter, just had last of 3xTax, and cannot get my head around all the rest that is to come.

I’ve decided not to have Tax no.4 as I feel terrible, so ground down, and relationships in the family are suffering badly now as I’m just not able to look after a newborn baby, two and a half year old, myself, and manage our home. OH is off work, but it’s still an enormous struggle as I just don’t seem to function on any level anymore. Onc says skipping the last of 4xTax is absolutely fine with him - that there’s no evidence 8 doses of chemotherapy are better than 7, or even 7 better than 6, that throwing more at it is the American way but doesn’t show improvement to survival stats. But I still feel unsure.

Next up is radiotherapy - under the arm and to chest wall, right up to above the collar bone! Onc says spread most likely to lymphs under ribs and this is the best way to prevent that, which came as rather a shock. As the wait at Brighton is so long, I have to go to the Marsden. More disruption. And then… what next? Tamoxifen I think, ovaries out maybe, **** knows what delights are in store.

I know how lucky I am to have found this before there was any secondary spread. I keep reminding myself. But I just can’t come to terms with the ‘new me’. I’m ugly and old and bald when I look in the mirror, the few hairs on my head are now grey, I have one breast, I can’t breastfeed my baby which upsets me everyday, and I’m about to go through the menopause, which should be 15 years away.

I just can’t cope at the moment, it seems as though we’ve been living with cancer forever and I can’t see an end. How did you all get through this? I feel pathetic.

thanks in advance

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Hi sweetie
It IS an emotional minefield. I have had 6 x FEC and am about to have weekly tax and herceptin and I haven’t had surgery yet. I have bone mets dx at same time as primary. I am fat and bald! The weather doesn’t help much being dark and miserable and post Christmas blues are not far away. you are perfectly justifies in feeling how you do, I feel a bit daunted my treatment at the moment too. What I am going to do is to do a sort of countdown of treatments on my diary planner, and cross off one at a time. Also, am going to try to plan a treat each week if I feel up to it. Is there anyone you could ask to mind the children for a bit, why not have your nails done. I think that you need some ‘me’ time where you indulge yourself just a little.
x sarah

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Oh Jane,
Just reading your post, I can hear the despair at your situation. Theres no easy way to get through all thats been thrown at you, as you’re finding out.
I had almost none of your problems and had difficulty coping, so you would need to be all the super-hero’s in the world rolled into one to think you can just shrug off the raft of issues you have.
I spoke with a cognitive therapist who said we are too good at trying to cope with such HUGE issues and then beat ourselves up when we dont quite get there.‘Guilt and indulgence’ are just other words for this.
The therapist said to me that just one of the events I was dealing with (badly) would be enough, so multiply that with your decision about treatment, coming to terms with the ‘new’ you, worry over breast feeding, facing early menopause etc etc - well who COULD cope?
Have you though about asking GP or local cancer group for support and advice to get counselling?
Have you tried the help line here? They have helped me in the past.
Its sometimes the rational and ‘detached’ person who can offer you light at the end of the tunnel and show you that you are in many many ways, coping much better than you think.
Hope you can find some peace of mind
Love Cathie

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Hi Jane

I am sure I am about to say what others have said, but you have just had a baby. It took me 9 months to get over my first baby being born and longer after the second. Your hormones will be all over the place and every problem can seem unmanageable. You need looking after. Your baby will be fine. It is you that everyone needs to drop everything for. The whole experience has been so much longer for you, you got to feel a little more human and then more chemo. That is v hard going. Your onc is happy to stop, so if you are safistied that they have thrown everything at it then stopping is fine.
As for rads, the travelling is a pain, but the course actually goes quite quickly. I had mine during the snow and had to dig my car out every morning for three weeks. You are not weak for needing help. This is a period in your life where you need maximum support to get through and hopefully it will be over soon. I am 39 and although I am not on tam it appears so far that I have been shunted into menopause. I am getting flushes but not too bad. I can live with them- no other Side effects so far. I still see a clinical psychologist and family councillor to help discuss issues facing me and them. My OH worked part time during my treatment, but has now gone back full time. He sees a councillor too, once in a while, because it is a lot to deal with for him.
I hope you feel better for getting it off your chest.

Take care, as someone said recently on here there is a reason why in air emergencies parents are told to put their oxygen mask on first before helping their children.

Debx

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Dear Jane
Haven’t been on site for ages but have think about all going through breast cancer treatment often, my heart goes out to you…
You’re certainly not weak or indulgent or pathetic IT IS HARD GOING either ‘just’ coping with

  • a 2nd diagnosis or
    -2nd baby & a toddler
    But both together!!! A huge ask!
    So try & be kind to yourself & not expect yourself to do the impossible…
    As for chemo 1st time i had 4AC & 4tax, 2nd time 6 AC & no suggestion of more – but i’m 58 year old granny – seeing my daughter with 7 week old & 21 month old daughters so can understand, a little of all the pressure on you
    Just hang in – follow your heart & those you trust – personally & professionally
    Love n hugs jk x
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Hi Jane,

I really feel for you. Coping with treatment is enough without everything else on your plate.
If the onc is happy to forget the last TAX then go with that.

You could really do with some practical help. Can I suggest you ring BCC helpline. they will be able to put you in touch with (MacMillan I think it is) who I believe can help with practical difficulties.
Do you have parents, family or friends who could offer weekly help until your treatment is over doing things like ironing, cleaning the bathroom, cooking a complete meal etc. Then you would be able to use the little energy you do have for your baby, toddler, OH AND yourself.
Do please seek help - you need it and accept gratefully any help offered. people like to think they can do something to help.

Take care and hope things begin to get a little easier.
Stella xxx

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Hi Jane

I do feel for you. I can’t imagine what it’s like to have young children and be going through it all.

You do get through it and in the not too distant you will be looking back on all this. It just feels such a horrible slog to get through treatment. I had a primary diagnosis in 2009 and had a double mx with axillary clearance, 4 x FEC and 4 X tax and then rads and tamoxifen. Hard as the treatment is I kept reminding myself that at least there were treatments and we do have a chance of surviving this.

What is the wait at Brighton? Travelling up to the Marsden each day is quite a trek. I think I would be asking the Onc if the wait is such that it would make a difference.
I live between Brighton and Portsmouth and I decided to have my rads in Brighton in 2009 with a longer wait so I could stay with my mum rather than have a 2 hour journey each way to Portsmouth.

do take care, a big hug to you
Elinda xxx

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Hello darling. Life chucks up some crap doesn’t it?

When you had your baby and dealt with chemo at the same time, I was so touched by your situation. It was, for sure, the toughest thing you’ll ever do but you did it didn’t you? Things feel as though they are worse now because bloody cancer is such a prolonged farce. For sure, don’t feel guilty. If you can’t think about your own needs right now, when can you? It ain’t the girls in the stupid hair ads that are ‘worth it’, it’s YOU. I was dx as stage 3B so know how anxious you feel.

On a practical note, I had an 8 FEC-T regimen but dropped the last FEC for various reasons. I had the same rads as you; 45Gy, chest wall, clavicle etc. NO SIDE EFFECTS AT All FROM RADS: none. Increase in efficacy for 8 vs 6 chemo is speculative. I finished rads a few months ago and now have Herceptin every 3 weeks until the summer so understand your feelings about everything being ‘on hold’.

Nothing WILL ever be the same again, but hair can be dyed and breasts can be reconstructed. Maybe you can look into recon options and plan that? Might it help to do one of those ‘it could be worse’ lists?..ie menopausal BUT AT LEAST have kids + now no more annoying periods, monoboobed BUT AT LEAST not monolegged (or whatever you think might be worse). I do that when it all gets a bit much. Can you get away for a few days to the Penny brohn Centre? It is a wonderful place. Or maybe visit an alternative health practitioner once a week, even if it’s just for some ‘me’ time?

One day, you will be able to look back on this as a very sad but finished part of your life.

xxx

And this too, shall pass.

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Jane, my heart goes out to you, poor thing. Having little kids is a really tough job on its own. Having BC is a complete bummer on its own. and YOU ARE NOT PATHETIC. I’m not going to go into all the “brave” crap either, because you didn’t choose to do this, you’ve just been chucked in the deep end and left to it. And you could do with a few rubber rings to help keep your head above the water.

I would love to offer some practical support, and it seems like that is what you are in serious need of right at the moment. I’m not sure whether you’d be able to get some practical assistance locally, would the CAB be able to suggest anything? Macmillan I have heard are really good at practical suggestions too.

I’ve heard the Marsden is really very good, but the journey could be a real pig, particularly if you’re already feeling so very low. Would you have to bring the littlies with you, or would you be able to go on your own, or with someone who could look after the kids while you’re having your treatments?

As for the breastfeeding thing, I think you’ll just have to let go of that one. There are so many people who have lovely, healthy children without breastfeeding, and while you do want to do the very best for your kids, breastfeeding does take it out of you too. And at the moment there isn’t much in your own reserve tank so the best thing to do for your little one is to look after yourself as best you can, even if that means she’s bottle-fed. Whatever else you think, you are not a failure for not managing to feed her yourself, YOU ARE A MASSIVE SUCCESS for bringing her into the world, caring for her, looking after, and being her mum.

For what they’re worth, have some more virtual hugs, I think you’re a really special person to be going through all this, it’s just so horrible.

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Dearest, Dearest Jane,
as everuone has stated, my heart too goes out to you, do much to deal with. As someone has already said, it is TOUGH being a new mum, with everything that this change brings, let alne having to come to terms with BC Dx?treatmet/helping loved ones deal with it all, and having no time to yourself. feelings of inadequancy/failure etc…

You are being so hard on yourself, sound to me that you have been a real trouper and a fighter to have acheived all that you have, WELL DONE YOU!!! you should be very proud of yourself…

On a more practical note, I absolutely agree with the other posts, speak to the ‘experts’ who can offer you support in many practical ways, have you spoken to your GP/onc/BCN, someone to talk to and offer support/help.

be kind to you and I wish you well, please keep in touch xxx Jenny xxx

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Jane - You’re an absolute star and i know that many many ladies on here think so highly of you, i’ve followed your posts from the beginning and have always thought that your story and your attitude was an inspiration.

You’re having to deal with enormous life changing events, absolutely huge on every level amidst massive hormonal changes, chemo after effects and emotional turmoil. You need to completely let yourself off the hook. Please look at getting some practical help as the others have said and make sure you let people know what you need - in every way.

Sending you much love.

Lynn

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Hi Jane, what a shocker of a time you are having! Could you not ask your health visitor to organise help for you, they liaise with the council/sure start and could probably help. I had two under twos and a primary school child and post natal depression it was hellish without adding breast cancer to the equation, have you been checked to see if you have post natal depression? The self image is a hard one to swallow, aging a decade in a matter of month, that feeling of not wanting to look in the mirror and then not recognising oneself, but 6 months on from Chemo things look a lot brighter. The local hospital here offers a volunteer service to drive radiotherapy patients to Oxford, 3 hour found trip, do they offer that where you are? Your BCN should be able to help, like it was said before Macmillan can probably help, too. I hope you get the support you so clearly have a need for. Sending you a big hug. X

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I knew this was the place to come for words of wisdom!

Thank you, each and every one who has replied, I feel partially restored already.

Monoboobed indeed, but oh so lucky to have all my other bits in working order. It’s funny how OH tries to give me a kick up the ass when I feel like this and I resent it, when actually sympathy from women in a similar position IS a kick up the ass!

I do have a lot of help from OH - he’s doing all the night feeds and I get to nap with toddler most afternoons, so again I am lucky. But you’re all right, it’s the practical side that’s hard. And while OH is a star, he doesn’t see dirt and cooking really ain’t his thing. I wish my family lived nearer.

The worst thing about Tax is the foggy head. I wonder if this is how it feels to have dementia? Has anyone else had problems working out pretty un-taxing (no pun intended!) problems, like how many ounces of milk the baby’s had today or adding minutes and hours together?? I’m only half present.

I agree that I’m a hormonal mess. I guess it’s no surprise, giving birth one minute, going through the menopause the next. My ovaries are hurting on Tax too and I keep imagining them dying! Good thing, I suppose.

Thank you all so very much for pulling me back on track. I will get through it, just like the rest of you. xxxxx

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I’m sorry you feel so bad at the moment but just to echo what everyone else has said you are entitled to feel bad. On a practical level have you heard of a charity called Home Start. They help families who are facing difficult time for many reasons. I had a friend who received support from them. A volunteer came round twice a week for about 5 months. She used to help out with some housework as well as entertaining the toddler. I will try and post a link to their website. home-start.org.uk/homepage
I had the same rads as you, 25 sessions. It was fine, but I had a bolus for every session and this caused my skin to break down. Travelling to the Marsdon everyday will be a pain. Can they bump you up the list at Brighton?
Sending you a cyber hug XX

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p.s. I’m going to stay with my parents just outside London for radiotherapy at the Marsden. I actually live more than an hour from Brighton as I moved house since diagnosis. I couldn’t do the journey from here.

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Just glad we could help, even if not in a practical way. I’d forgotten about the health vistor, another really good source of help there. Get everything you can get your hands on, you deserve it.

Sleep well

CM
x

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Yup; you’re not on your own.

Batten down the hatches. Pop your head out now and again to make sure the clouds are still overhead and one day, you’ll be surprised to find sunshine instead.
xx