Having a bad week: Hello All Not having a very... - My Ovacome

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Having a bad week

MaggyH profile image
20 Replies

Hello All

Not having a very good week, and its only Tuesday!

I was diagnosed with stage 3 OC in September 2012 and due to have my 3rd of a cycle of 6 chemo sessions on Friday which hopefully will shrink my ovarian tumours enough for them to be removed. I am having a CT scan on 20/12 to check how things are going.

My problem is how do I stop the awful thoughts which constantly seem to be in my head all the time, such as what happens if they dont shrink, has the cancer spread any further, if they can operate will it come back and how soon, how will my husband and 13 year old son cope without me?

I think about it as soon as I wake up every morning, and during the day I find these thoughts popping into my head constantly.

I have contacted our local cancer help centre but they have no appointments available for therapies or counselling until January.

I am off work on sick leave at the moment and I probably have too much time on my hands, but any tips or advice would be really appreciated.

Thanks

Brenda

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MaggyH
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ChrisH profile image
ChrisH

Hi Brenda

Sorry to hear you're having a bad week, it happens to us all. You're worries are natural, and everyone finds their own way to cope. I try not to think too deeply, and concentrate on believing its going to work. Your scan after 3 sessions has a twofold use, it not only shows the oncologist how well the chemo is shrinking the tumours, but it proves to you how well it's doing. You don't say whether you have been having CA125 blood tests. I have them before each treatment, and they show a big drop each time, so I know the chemo is working.

On the counselling front, you could ring ovacome, I'm sure they have someone who can help. Also do you have a specialist nurse? I also have someone from my local hospice that came to see me early on, and phones me regularly to make sure everything is ok. The hospices have people that can help not just you, but your family as well. If your son is anything like my daughter( now 15, she was 13 when I was diagnosed) then the idea of talking to anyone makes them run a mile, but knowing someone is there can help.

I have a number of distraction techniques. One is needlecraft, I knit, crotchet, cross stitch and embroider, whichever grabs my fancy at the time. Watching a good film, or listening to music is another. Finally, when all else fails, nicking my daughter's game console and playing some mind numbing game does wonders!

I hope you can find something to help

Love Chris

Hi Brenda,

There are no easy answers to this...as you already have had breast cancer.... it is really like telling you to suck eggs...but of course the good news is that was ten years ago... and you were probably feeling the same then (when you were first diagnosed) the thoughts do go round and round in your head... but you've been there and out the other end... and hopefully

you will do it again...I expect when your lovely son was three you never thought you would get to see him at thirteen but you have... there are goals to reach and it is just one day at a time...it is easy for me to say but every time awful thing pop into your head just try and think of things that make you happy...maybe it's listening to music, watching a film,reading or baking...whatever fills that space up...but I know it is hard we are always here to support you sometimes we laugh.. sometimes we rant... but we are here.... best wishes love x G x

charlie12 profile image
charlie12

Hi Brenda

I'm so sorry that you are feeling like this. It must be surely totally normal given the shock of your diagnosis, the fact that you are having chemo and are facing a big operation.

I found a mindfulness -based CBT course excellent for these awful automatic thoughts that just seem to consume me when I get upset about things. As Chris says identifying distraction techniques that work for you is also really helpful as is taking as much exercise as you can.

Is it all or nothing as far as work is concerned ? My organisation has a policy that people who are signed off may come in if they feel up to it and they are capable for short periods.

You will get through this , honestly !

Take care

Big hug

Charlie xxxx

This is tough. I found a few things to help. One is drawing up a list of mental strawberries. These are happy memories. Each time an awful thought entered my head I would close my eyes and concentrate on the happy memory.

I found relaxation tapes, specifically one produced by a local nurse and one by Bernie Seigel MD: berniesiegelmd.com/products...

Also this thought: your job at the moment is to get well. To do this, you have to feel as good as you can. So be kind to yourself. Forgive yourself for being tired and cracky, if you're tired, then take a nap. Set a small goal each day, and try to achieve it, for example baking a cake for your son, making a favourite meal, whatever.

Gwyn's words are very wise. Right now just take it a day at a time.

Cx

Oops, craNky! I blame the iPad. Trouble is, this is typed on a laptop...

Cx

in reply to

Haha Chris,

Cracky is good too...teehee my iPad does this all the time I am sure if I look inside there would be a brain in there albeit small LOL ...I had to laugh at the mental strawberries (I might want to eat them) love x G x :-)

wendydee profile image
wendydee

Hi Brenda, sorry you are having a tough time at the moment, remember, it is just at the moment, it will get easier, as you probably know if you have got through it before. There are lots of good ideas here, just wanted to add that Ruth is on 0845 371 0554, if you want a chat to a nurse who will know how you're feeling. She may also be able to tell you of an Ovacome Fonefriend who might be able to ease the load a bit. These are explained on the Ovacome website. Just wanted to send you a hug and say you have lots of friends here who can help you through this but if your treatment. I love the idea of strawberries! Yummm!

All the best,

Love Wendy xx

Hi Brenda I'm sorry too. Was diagnosed same stage in July so a little ahead of you and it sounds so very familiar... The important thing is that you are reaching a stage after the first 3 where more decisions can be made. That in itself gives a little more stability rather than the roiling thoughts which dominate quite easily when there is so much that is unknown. Especially having had changes of op plan before, that's tough. Your scan and ca125 after the cycles will kind if give you a handle on the direction of travel too, if that makes sense. If they operate you can also have a little respite at least from horrible chemo effects too, which really helps.

Do not under-estimate how much those physical effects disturb rest -- you are probably also tired out from this AND the fear/emotions both. And as a mum probably stressing about the family too.

Distractions are good. A bit of work even if it's just contributing to some thinking, perhaps (depends on what you do...). A bit of creativity really helps me (midnight blogging but written offline so I don't inadvertently post something dreadful). Maybe a journal of these thoughts would help wrestle them under control more? Like Chris I also make stuff - candles, jewellery etc.- and that's been good too though hot wax and neuropathy numbness isn't a very good mix so not sure I would recommend that particular one! Fill the void into which the wretched thoughts creep with positive small things, however you can - that's the essence of what I'm saying here. Totally agree with the talking to someone advice too. To me that's more constructive than creating white noise with films etc. too but whatever works for YOU.

Thoughts are with you. I have my end of cycle 5 of the 6 tomorrow and feel like I might be on the home stretch - most of the time!

Sue

Xx

Whippit profile image
Whippit

Dear Brenda

I'm not sure I can add anything useful to these really helpful posts - except to say you're with friends on the site. You will find people who've been through exactly the same path who will help and support. All I can say at the moment is hope for the best. Most of us respond to chemotherapy and then the surgery is really what makes all the difference. They can remove so much of the problem area it will give you a new start.

As for distraction ideas. I enjoyed seeing friends and colleagues from work and just pottering - walking the dog, spending time with loved ones. Please don't even start to venture into thinking 'what if ... '. It's a waste of good time.

Let us know how you're feeling. There are lots of us wondering how you are even now. You'll find lots of support here on the site.

Loads of love, xxx Annie

Madz profile image
Madz

Dear Brenda

It's hard there is no denying that, sometimes I find myself laughing at something on the TV or with a friend, or getting so engrossed in something that for a little while I forget that I have cancer. It is often fleeting and then I have a jolt when I remember but I am not alone in that and for the majority of time it is at the forefront of all our minds and that of our loved ones, the same few minutes of reprieve and then the jolt. So the answer is to get those distractions in as much as possible to allow yourself time to have some fun and bit by bit to join up those positive times. We have tough diagnoses and the uncertainty and worry is awful but the right things are happening for you at the right times and each day is great, you are great and you have all the love and support I can send you across the e-waves, and that of the great ladies on this site who have such wise words whenever we need them. I really hope you find some extra support from the suggestions above, my CNS has been really helpful to me so I hope yours is for you

Lotsa hugs Amanda x

Hi Brenda

So sorry that you are having such a rough time. I can only add that in my experience the more you try to stop these thoughts, the more they come. They are natural in the circumstances, and the only thing I can add to what has already been said is, is it possible to slow them down and focus on the next step only? For now, you have your half way mark coming, maybe you can defer worrying about the other issues till later.

In the meantime, I found it helps me to have at least one achievable goal each day - sorting out a drawer, writing an email, giving the dog an extra walk, whatever.

Wishing you the best

Monique x

positive profile image
positive

Hi Brenda, I am fairly new to this as well about to have chemo number 4 and I don't really have anything to add as I agree with the others but just thought I would let you know I was thinking of you. Try not to think to far ahead at the moment. Best wishes.

Sue x

ladygooner-uk profile image
ladygooner-uk

Hi Brenda,really sorry its tough for you at the moment, I think we all empathize with you as we all have had those days, and still do to an extent. I would urge you to contact your gp and ask him to refer you for CBT , he should be able to through the surgery, that will give you the tools to deal more effectively with your thoughts and feelings.

I hope you start to feel better soon

Hugs

Sue

X

citrine profile image
citrine

Hi Brenda

Just sending you best wishes. I agree with all the suggestions from the other ladies. Needlework or any handicraft, escapist films, books, games.Make plans to do nice things. CBT and other therapies can give you the tools to chase dark thoughts away. I found it got better as time went on.

Hope you feel better soon.

Love Mary xxx

MaggyH profile image
MaggyH

Thank you so much all for these helpful and positive comments. I went out yesterday and bought a juicer ( I always meant to buy one but never got around to it), receipe book and lots of lovely fruit & veg to juice, I contacted work and there is some work that I can do on my computer at home, and I am going Christmas shopping later today.

I have no idea what CBT is but i will check it out on the internet, I am feeling better already and will try and take one day at a time, and concentrate on happy thoughts.

Thanks again

Brenda XX

Whippit profile image
Whippit in reply toMaggyH

Dear Brenda

It was so good to read your post and to know you're feeling better today. The juicer is a good idea. I eat fresh fruit - lots of it - but also mix up some juice each day and sometimes I add wheatgrass or spirulina to it - you can get that from Holland and Barratt. It's like drinking sunshine.

It's good you can also do some work at home and I hope this will lead to regular contact with your colleagues as that's a positive link with normality.

On and up!!!!! love Annie

pixinafix profile image
pixinafix

Good afternoon

Sorry to hear you're feeling down.

Have you tried doing all your worrying non-stop for 15 minutes in a morning, no other thoughts allowed, and then the rest of the day reminding yourself that you've 'done' the worrying for that day? You need to have a list of 3 or 4 things that make you feel happy and if you find yourself worrying, switch to thinking about the happy times. Even as I type, the memory of seeing one of our daughters at 18 months toddling off to the beach in her swimsuit, trailing her bucket and spade is making me smile. She's now 28 and an engineer.

There will be lots of positives in your life now as well as in the past, so start thinking about them before the counselling can start.

xxChristine, and an electronic hug, as hugs can say more than words

Hi Brenda,

So glad to hear you're feeling better, but so sad to hear about your down days. I don't have OC, I'm on here because my mum was diagnosed in Sep and like you is on her 3rd chemo of 6 (which has been postponed 2 weeks because her blood wasn't good enough). She had the operation at the start though, and the drop in the CA125 was massive so that's something to look forward to. The biggest struggle for me has been trying to come up with a way to think about it that I can live with and accept things more, and likewise will help my mum live with and accept it more. FIrstly, by being on this site I cannot tell you how much it's helped me - my Christmas mission is to get mum on here when I've taught her how to turn a computer on! I've talked with her about how she feels, and we know that it is likely to recur even after she wins this first part of the battle which she WILL do - but this could be in 10 years, or 20, or never! It's impossible not to think of all the 'what ifs' but we always try and throw in a few more (I don't know if this helps), like 'what if' I get knocked down by a bus next year and then I'll wish I hadn't spent it worrying about other 'what ifs'. Who knows?! And also, when I worry about it coming back, I just think of all the brave ladies on here who are proof that so what - you can fight it again, and again, IF need be. You can only cross bridges when you get to them. One of the most important things is being happy and positive though - I truly believe it's the best aid to recovery.

All my best thoughts are with you and I hope this helps a bit. It can be all-consuming, but talking about it, and distractions seem to be getting us through it so far. Angela xxxx

sarem profile image
sarem

hello Brenda

I was disgnosed in June with possible ovarian cysts or cancer. Had a variety of scans and was told they were going to treat me as if it was cancer. I was booked in for a hysterectomy in july and when they operated they found that I had grade 3 and were only able to remove 1 ovary and closed me up. I then had 3 lots of chemo which shrunk my tumours significantly. Chemo passed undramatically apart from the hair loss and a couple of sleepless nights. I was then booked in for debaulking(I hate that term) and a total hysterectomy. The operation was a huge success and they have removed all the remaining bits of tumour. I am about to start my next round of chemo.

I have remained positive throughout. people are amazed that I have cancer when they find out as I dont look ill. I have lost a bit of wieght but needed too any way so even that looks quite good. i did have a few negative thoughts at the beginning but soon learnt that they were not doing me or my family any good. You have to think good thoughts and convince yourself you will get through this. I felt rubbish for the first week of chemo but 2nd and 3rd week I went out for lunch or coffee with friends. One week I was booked up to go out every day which I did find tiring but lots of fun. I made sure I only did one major thing each day and then rested for the rest of it

.I did write a mental list of all the positive things of chemo, some were quite amusing, rather than focus on the negative. You have to believe you are going to get better, you deserve to get better and you will get through this.

Take care of yourself and make sure you laugh more than you cry each day.

Best wishes

Lorraine

MaggyH profile image
MaggyH in reply tosarem

Thanks Lorraine, its good to know that someone else has had a similar experience to me, and well done for staying so positive.

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