feeling lost

Hi all

I've been a member for a few weeks, but this is my first post.

I'm 32 & was diagnosed with an Immature teratoma, Germ Cell OC back in March & hav not long completed BEP chemotherapy (4 weeks ago).

Since it finished, especially the last week, I've felt so lost & alone. I don't have anyone to speak to who has been through the same diagnosis / treatment, as it's so rare in women & I was the only female being treated for it at my hospital.

I've tried speaking to people about how I feel, & all I get is "Och, you'll be back to your old self if a few weeks. You've been through a rough time recently. Give yourself time to recover"

1) I know better than anyone what I've been through

2) why aren't you actually listening to what I'm saying?

Things with my husband are the worst. Did anyone else feel as though their partner just didn't "get them?" I'm constantly in a state of anxiety because I don't know if I'm coming or going with him. i know he's been going through the mill too, watching me at my lowest, but it's as though, now the chemo's done....,no-one cares.

That's probably unfair of me to say, but that's how I feel. I just don't have anyone I can really talk to that understands what is going on in my head.

14 Replies

  • Have just read your post and firstly wanted to say hi and welcome! Trust me people will reply! I'm so sorry you're going through all this crap but you've taken a great first step in joining this forum which is full of ladies who understand exactly how you feel and will support you on your journey. I was diagnosed with OC stage 3b last year and completed chemo in Nov. I remember feeling incredibly isolated when it was over and sick of everyone saying how happy I must be! I wasn't! I was just frightened about what to do next and frightened about not being monitored!

    My hubby was a bit the same - I think they see you go through so much and almost go into a bit of denial - it's over now so you WILL be back to how you were before!

    Honestly these feelings will lessen

    Don't be too hard on yourself - just deal with the black times because honestly you WILL have good times again! Often a chat to the ovacome helpline is beneficial - if only to have a rant!

    Sending love and positive vibes xx

  • Hi Weejax, bless you my heart goes out to you as I totally understand how you're feeling right now. I was diagnosed with low grade earlier this year and I remember thinking in the midst of endless hospital appointments "I feel so alone". I now know why I felt like that and it was because I was so busy putting on a brave face in front of family and friends that I was putting my own fears and worries to one side. I wouldn't even allow myself to have a good cry because it felt like I was admitting defeat. I'm still in the middle of chemo but I know from other posts on this site that when the treatment stops a lot of people hit a massive low. It's because they say they feel more vulnerable and also because people around them assume that now treatment has finished they can dust themselves off and get on with life. Cancer doesn't just affect you physically, it has a massive mental effect as well so you need to allow yourself time to heal. You and hubby have been through the most horrible experience and it sounds to me like he's desperate for everything to get back to the way they were before your illness. Things will never be the same as they were before but you will find a new normal. To find that new normal you need to talk to someone. Phone Ovacome on Monday as they have specialist nurses you can talk to. Things will get better, I promise you, just keep putting one step in front of another, massive hugs Kerry x

  • H Weejax, I agree with you, finishing treatment and your routine is gone, you feel lost, no support or help its as if you are alone on a desert island. We all get that way. If you have a Cancer Support Centre near you, now is the time to go there and talk with a counsellor or have some light foot massage if available. If not go and phone the Ovacombe Nurse next week. It is also common for our friends to think we are fine when the treatment is over because they dont understand the side effects linger. You get "You look great" when deep inside you feel awful and it was an effort to get up and dressed and go out. Sometimes our friends dont know what to say or do. You will find life changes and you lose some friends but if they are negative, well you are better off without them. In a support setting you have the opportunity of making new friends. It is very early days yet. A few years down the line and I get the impression my other half thinks life goes on as normal if you are able to get out of the bed and do housework etc. Men do react like that, well not all but some. I hope that helps a little.

  • Haha suzuki reading your reply just jogged a memory for me! I was waiting for a date to go into hospital for my initial op and hubby and I were both still reeling from the thought of cancer- I rremember saying to my cns how hubby visibly relaxed one day when he came in from work and I'd cooked a meal and the washing was on the line! ! Their coping mechanisms :-D:-D xx

  • Hi and welcome to the group

    We all know the feelings your going through and yes it is scary but as the other ladies have said one step at a time

    I felt angry and frustrated as the family seemed to just push it aside and life back to normal except for us it isent not the normal we knew I am not up to returning to work and have found it so hard I miss the social interaction so much but you do start to get a new sort of normal it's hard but you will get there phone the helpline and have a chat they will understand your anxieties sending you cyber hugs

    As for the other halfs mine buries his head in the sand and pretends all is normal it's his way of coping but frustrating for me at times as it's not the normal it once was xx

  • You have sounded a bell by your last sentence. I feel it is so frustrating that once you are up and about, all is grand in their lives. I remember saying this at a counselling session and it seems that a lot of husbands do this regardless of what illness you may have. I honestly cant remember what she said to settle me chemo brain! Yes I remember now, my mother in law died many years ago from ospheagal cancer and care back then wasnt as good as now. Pain control was unheard of and his sisters brought her home from hospital, So she thinks my hubby does not want to remember that time and does not want to associate my illness with it/ Apart from that he was in the army and they are trained not to show their feelings when at war. So to me this did make sense. He didnt want to go there and bring back bad memories. Maybe something similar may have occured in your other halfs life. Having said that a friend with minor illnesses has told me that her husband is so much in denial that if she fell down in the morning, her hubby would prop her on the sofa and pretend she was fine

  • Lol yes I think my husband would do the same or get me a chair by the cooker no joking aside it is frustrating they can just forget the cancer for whatever reasons wish I could can go days then it tears up in my head again I think as well at the back of my mind am thinking ok so I crack on doing what I can in my new normal life start enjoying things then wham the sod comes back then even my new normal goes out the window and back to square one

    Bit like a game of snakes and ladders

  • Yes its like snakes and ladders, up one step back two. But if we remember the treatment makes us better although it make us sick at the time we get it, it helps a little. I suppose we have to make every day count as no one is promised tomorrow

  • Welcome to the group nobody wants to join. Like the others I too felt very alone. I had borderline removed in 09 with no further treatment so would iterate that it's not only those who are going thru further treatment that feel like this. 6yrs down the line of can still feel like this on odd occasions. Perhaps when I am sitting on the bus or out having a great time with my fab hubby. It just waves over me and I have to keep the tears in. If it happens at home I let them out. Always feel better afterwards. I admire anyone who has had cancer and can move on and away from their diagnosis. For me it is always there. Do call Ovacome in the morning. Or speak to someone at Macmillan as you are not alone. Try to join a support group - I did and it helped a lot. Do I hear a Scottish accent there? I am from Moray tho live in London now. Take care and do keep coming on here - we are a friendly bunch who will always come up with some wise words!

  • How you are feeling is absolutely normal. I think everyone here has been thru' the same thing and, in a sense, the advice you've had, that you will feel better in time, is right.

    The problem is, how to get there. One thing that can help enormously is talking to an experienced cancer counsellor. You can find one thru' your hospital or GP. You could call your CNS as a first step.

    When I was in the same place, I found it helped tho give myself a couple of simple tasks to get thru' each day. We all live with the fear of the cancer returning - the only thing that helped me with that was time. As the months and then years passed after treatment, I began to regain confidence in my health. Again, your CNS can help with this.

    But you have only just finished treatment and physical recovery can take years - six months after chemo and up to two years after surgery, depending on the extent of the surgery you had.

    I'm sure you husband does care and that your friends and family also care. I suppose much of the problem is that they simply don't know what to do. Some men will talk, others put their head in the sand. I can only suggest trying to do something together that you both like, cooking him a favourite meal, going out together. Sometimes it's easier to be the person with cancer, and sometimes you have to be the strong one.

    You're very young - there are groups for young cancer survivors, Ovacome run one that perhaps you could connect with. Because your cancer is so rare, there may not be a support group - I have never heard of one.

    It's hard. The only consolation is that we have all been there and we have all slowly come to terms with the diagnosis and returned to a kind of normality.

    Best, Vx

  • Hello

    I am so sorry to read your post and that you are feeling so alone. I can empathise with how you feel as I also felt very alone and that no one gets me. Is there a Maggie Centre or any other service you could access where you can talk. I recently went to Relate with my partner (of 24 years) because I had a melt down and part of the problem was that I don't feel listened to or supported. Sadly they can't start seeing us until September, bust this might be something you could try.

    I hope this site and the people on it can give you the support you need.

    Best wishes


  • My oncologist told me, just before my second operation, that I was about to step on a roller coaster and when I got off I would be feeling confused and probably depressed. When having treatment there is a feeling of something being done. The shadow of maybe follows us in a different way. My husband has given the impression that he considers me 'fixed' so when I had my urgent scan he admitted that this is always in the back of his mind. We all cope in different ways, communication is everything.

    Relief that the journey is over, for however long, does give the impression of disinterest. I work at a Therapy Centre and talk to lots of people who feel this way, it's very difficult.

    Sending best wishes

    LA xx

  • Hi I do empathise and would repeat that what you are experiencing is a normal response to what has happened.

    However it is medically recognised that the end of treatment exposes you to a very high risk of depression. My advice would be to also speak to your GP about things. I have found talking therapies have been a life saver plus a little bit of anti depression medication.

    I thought my husband was going a "bit loopy" to use a medical term and even began to doubt whether he actually understood my diagnosis. Now my psychologist has seen us as couple I feel we understand each other much better. I found his carrying on attitude very difficult and uncaring when I was feeling pretty crap. I now know that it is about him trying to make sense of and get some control of a frightening abnormal situation. He still drives me insane though!

    This is a phase and it will pass but do get some help. A good psychologist is worth their weight in gold

  • Hi All

    Firstly, Thank u so much for taking the time to reply to my post. Apologies for the delayed reply, I've been away & not had internet access (!).

    I've been feeling a bit better the past week or so.

    Ive taken things back into my own hands & arranged things to get me back to my old self - counselling, fitness classes & clearing out my house!

    The end of chemo, coupled with ongoing side effects & menopause just got a bit much in the end.

    I know people mean well when they say "u look great!", but it's really annoying when u know u only Look great cos u've had 3 showers & are wearing the entire contents of Boots make-up counter, lol! I might look great, but inside I'm struggling & can't make a cup of tea without it wearing me out!

    I guess I just hit a wall a couple of weeks ago, & speaking to friends & family about how i'm really feeling, rather than just putting "a brave face on" has really helped.

    The chemo I had was intensive & continual over 9 weeks, so all of a sudden, there was a week without hospital appointments & monitoring. I actually cried after my last injection, with both relief that the chemo was over, & the hope that it is my last injection.

    I too, am not yet fit enough to return to work & tbh, dont intend to go back before I'm 100% ready - this illness has made me realise work is just a small part of my life & I'm not putting myself under uneccessary preassure to return early. I do miss the social interaction, but I'm trying to arrange things to help stop me going crazy!

    My husband is the most caring & amazing man I have ever met - feel like I may have done him an injustice in my initial post. He's been extremely supportive & I couldn't have fought this battle without him.

    Thanks again to all for ur replies.

    Weeajx xx

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