Sorry to seem needy

I know it seems needy but I feel sad not to have had any replies to my first post. It's probably because I didn't phrase it right or make it clear that I just wanted to feel less alone and to hear from one of you who have had to go through so much already and are so amazingly strong.

I feel in limbo just waiting to have my clinic appointment so they can tell me what will happen. It's a 6cm mass and enlarged lymph glands and lots of fluid and perineal disease and I just feel alone. I have to act "normal" for my son with Aspergers doing his GCSEs (will tell him when these are over in 10 days).

Please can anyone just let me know you have read this? Sorry again to bother you all.

31 Replies

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  • Hi!

    No you are not needy- just plain scared I guess! There is nothing like waiting for something to happen- it just gives you more time to wonder what is going on.

    This forum is a blessing for those in need of reassurance, especially as you say you are feeling so alone.

    Good luck with your appointment- once that is over at least you will be more informed as to what is going to happen.

    Love

    Anne x

  • Hi Don't feel needy it's an incredibly hard place to be waiting for results and a plan of action.

    There is no easy way forward other than trying to distract yourself, no point saying you won't be thinking about all the time , you will, but somehow having that plan of action when it comes does make you more in control.

    The ladies on here will come and support you your not alone even when it feels like you are.

    Good luck with the appointment xx

  • Hello, don't be so hard on yourself. You have been through an ordeal to get to this stage and dealing with unsupportive GPs only add to the stress in my view! While you are on this site you are never far from some comforting and reassuring words and plenty of virtual hugs too! As many of the ladies here will confirm, waiting between diagnosis and treatment can seem endless so you should try and get support from the Ovacome team who can offer advice and reassurance.

    You have a lot to deal with so don't feel sad, someone will soon be along to offer support. 🙂

  • Hi, sorry, only just seen your post and susequently read your first. You're not needy, your at the start of a scary journey. Its a horrible time and I well remember the nauseous fear when I first started my cancer 'journey ' . Having said that I was diagnosed stage 3 in 2007 and despite two recurrences Im still here, still working full time, currently on a trial drug and showing no evidence of disease. Please stay away from the internet, statistics are just that, statistics, you are an individual and those statistics cant tell you what will happen to you and they'll just scare the c**p out of you. The worst part in all of this is the waiting, your mind thinks all sorts. You're nit alone, we are here for you, just may take time to reply. oh and you're not bothering us at all. We are all here to support you. Sending you a big hug, Kathy xx

  • Hope that you soon get the answers you need,please do not think that you are needy,we are all in the same boat and can understand how you are feeling, the ladies on here will always get back to you;there are times in the day when the site is less busy,but you will get replies,wishing you all the best xx

  • No you are not needy, we were kind of slow responding to your first post and apologies for that. There is always one of us at the ready so if we dont respond, dont worry we wont keep you waiting for long. It is also hard waiting for your clinic appointment and also it is a very worrying time. Hopefully you will get the apt soon and the gynae onc will discuss with you what is best. If you think of any questions, write them down and also another pair of ears at the consult is a very good idea. It must be upsetting when you have a son with Aspergers because he wont like his routine upset too much. Indeed you do have a lot on your plate. So get the apt and deal with that, then speak to your son and hopefully you can organise company for him while you are in hospital if that is what is going to happen. Once you have a consultation and some idea of what is going on together with a treatment plan, you will worry less.

  • Hi there your just trying to reach out to people who know how you are feeling, as the other ladies have said the waiting is horrible, when you get to see your medical team and they tell you what's going on and the plan they have you will feel at least something is being done. This site is great and there is always somebody who will reply so please keep posting if you need anything. Big hugs

    Karen

    X

  • Your not needy at all its a very scary time and the waiting is cruel! As Suzuki said don't worry you will always get responses here even if it takes a few hours! When I was diagnosed I found that writing in a journal helped! I wrote down all my feelings and it really did help! I also wrote down all the questions that came into my head so I had them ready when I had appointments with the consultants! It might help but there is no doubt that it's a very difficult time! Also as Suzuki said you will find it easier once there is a plan in place!

    All the very best to you!

    Dx

  • Hello Goldengourd, You are NOT needy. You are human and very, very scared. Just like me and everyone else who finds themselves here. This is a new, uncharted journey. I can tell you that after being diagnosed stage 3C with metastatic peritoneal carcinomatosis from ovarian cancer that I was in shock for weeks. I was also full of as cites and had my abdomen drained twice in 4 days. I had chemo first with carbo/taxol to consolidate the cancer. It worked amazingly well and the ascites completely went away. That was 7 months ago. I then had debulking surgery where they removed everything a human female can live without. I then had abdominal cisplatin/taxol chemo which also worked amazingly well. My CA125 has been in normal range for months. I am now getting weekly carbo/taxol just to kill any remaining microscopic disease. I AM FINE. It is possible to get through this. Yes, many of us have recurrences, but we deal with that one day at a time. So, baby steps are a good way to look at this. One day at a time. Tesla in Seattle

  • I don't know how I missed this. You need people who have had or are having similar problems. It's human nature to not want to feel alone. I'm sorry you felt that way. Everyone will say waiting is the worst, not knowing.

    Please don't ever feel you are bothering anyone here. We are here to support each other.

    Personally I didn't feel particularly strong, numb was more like it.

    Let us all know how things progress and what you need. You are not alone! Nesie 237

  • I'm sure we're all needy on here at times so don't worry about that. Sorry I missed your post. I was very busy last week and at the weekend. I've recently finished chemo so I had a lot to catch up on, and people and places to catch up with. I went to the Hepworth gallery in Wakefield at the w/e and then went back again as my daughter wanted to go too.

    It's a scary time waiting to hear what the treatment's going to be. I had a scan yesterday and won't get the results till I see the docs after my holiday. All we can do is try to distract ourselves until we know, then the planning starts, which I am sure you'll get plenty of help with on here.

  • You are not needy, we all are! I had my diagnosis when my son was doing his A levels and it is horrendous trying to be up beat and normal. Had my op on daughters 14 th birthday. We are all here to help each other. Xx

  • Thank you all those who took the time to reply. It was really helpful. I now feel part of this community and feel stronger through it. I have kind friends but this is something only those of us who have "freeloading" inside us can fully empathise with. Thanks again new friends - I feel more ready to face this week now.

  • Hi there

    I'm so sorry that you have had to join us and apologies for not replying earlier.

    I presented with a large abdominal mass and had a diagnosis within 36 hours. The only snag was that it was wrong....so while waiting is a pain in the xxx , these things take time to get right. However my mass , which turned out to be a borderline tumor has , touch wood , not reappeared six and a half years on.

    I really do hope that the next few weeks go reasonably quickly for you. Try to get in as many healthy treats as you can and keep busy. Exercise in the fresh air with other people makes us feel so much better.

    Do please keep in touch and let us know how it goes.

    With love and hugs xxx

  • Hi GolkdenGourd. I'm sorry, I've just seen your post. Your not needy at all, just anxious, scared, up to high doh with all that is going on at present. The waiting is the worst time, we've all been there so know what it feels like. I do hope your son's exams will go OK and hopefully by the time he has comp!eted them, you will know more and be able to explain it to him. Seek professional help with this if you need to.

    The ladies on here (and some men too) are great and we will give you all the support we can. In the meantime, be kind to yourself. Take some time out for you, maybe coffee with a cloise and trusted friend or relative, someone that you can share your burden with. Get the next couple of weeks over and hopefully there will be a plan in place by then. Good luck. Ann xo

  • Thanks Ann. I have 2 good friends - met when our kids were babies and now are at uni (the older ones) so I feel supported. But this OC is something you and those on this site can understand in a way that they just can't. I am seeing an onco gynae consultant on Monday and feel stronger today. Thanks again. I hope you are on a good path health wise?

  • welcome, dear sister. we are all in the same boat here. you are not alone. please take courage and hold on to hope. new developments in treatment coming along frequently now. there is good reason for hope. thinking of you and wishing you all good.

  • Thank you for that. I wish you all the best too.

  • Re your son. All aspies are different but I have found it a god send. What you lack in empathy and emotion you make up for in being pragmatic and unflappable. As long as he is aware of the processes you will undergo he may not be overly affected at present- that isn't to say god doesn't love you but some of us are programmed differently and just approach issues differently from the rest of you. He may be your strength and help keep you grounded. A lack of emotion and hysteria can be a blessing a times X

  • That should say he- not God!

  • Hi NicJP - what you say really chimes. I will need to tell him this weekend because the appointment for my OC is the same time next week as one of his exams. I always take him so he will want to know why my friend will be taking him. I expect we just need to do it - what you say gives me more confidence. May I ask where your experience comes from of Aspergers? No need to answer if you'd rather not I'm just interested. Thanks again for your input and all the best to you.

  • My good self. All I will say is it may distract him from studying as he will obsessively research the subject, variations, outcomes, statistics, consultants in your area, trials etc etc. It can be hard work being an obsessive over achiever. I like routine and order and all this hospital sillyness is disruptive. It wasn't in my diary! He will be fine. Aspies tend to be practical rather than emotional. X

  • All the best to you. I hope to hear how you're getting on as and when you feel up to posting. I won't gush as it probably is now what you want - my son avoids "gush" with all his might.

  • With him on that- emotion makes me quite uncomfy. Just best to crack on and deal. I don't even do "holding hands"- it makes me sweaty. My poor hubby probably really stressed but ironically I am not. Statistically I should be fine. If not I know what all the stats are and will adjust life accordingly.

  • Hi, firstly I'm sorry you've had cause to find the site but you will find a lot of support and experience here.

    Secondly, it would be good if you could edit your posts and tick the box at the bottom so it's only visible within this community.. Sometimes people are reluctant to comment on an 'open' one which can be seen via social media or the www!

    There are some excellent resources on the OVCA charities' websites. Ovacome have (I think) a good list of questions to ask your consultant. Target Ovarian Cancer have a great booklet which can either be downloaded or ordered and is called 'What Next?' for when newly diagnosed which covers not only the medical side but also the emotional impacts etc with advice and personal stories from women. These two charities along with Eve Appeal and Ovarian Cancer Action jointly published a guide for younger women which you should see a link to on the right of this page, or can be accessed via each of their websites... There is a section for women with younger children....

    I do recognise the dangers of dr Google, but also strongly believe that for many of us, accessing good quality information can be both empowering and useful in finding some grounding when thrown into that dreadful whirlwind at the beginning & also as a consequence reducing the panic and isolation. Do start with good reliable sources tho eh the charities I've mentioned and also for example Macmillan /CRUK & try to limit the extent of your reading.... Any period of not knowing will often be harder, so try to be gentle and kind to yourself... Wishing you hope & strength xxxx

  • I'm not sure which box you mean about editing posts so they are only visible in this community. Could you give me some more info? Thanks

  • Hi, think you've found my other post re privacy but also, the little arrow pointing downwards under every post & comment is where you'll find the 'edit' option! Xx

  • Sorry to jump into your post, but I also have a son with Aspergers. I'm yet to have a diagnosis, but from what the GP said last week about a solid mass on my left ovary, I've a feeling that when I've seen the gynaecologist on Thursday I will be having a laparoscopy at least. I've got 3 almost adult sons and so far I haven't said anything to them about what's going on. I know 2 will be fine, but the aspie is my main concern. How did you explain what was going on to your son please?

    Thanks xx

  • Hi Butterfly. We waited until he had finished his G C SE exams before telling him (a wait of 24 long days where I needed to act as usual which was hard). Then I took the dog out with him (it is always easier to talk alongside rather than face to face for us) and told him the facts as succinctly as possible ( I have OC, the doctors have a plan on how to treat it, they know what to do but it will be hard, I will be less able to do things for a while but it will be a good opportunity to become more independent). I then left him to take it in and said he could ask me anything and I would try to be honest.

    The main issues for us (and I suspect for many Aspergers teen families) are that uncertainty is stressful and the diagnosis and prognosis, as well as how treatment will go are riddled with uncertainties of course so that is the worst aspect for him to cope with. The fact that I, his main career and the one who is always able to try and help, may not be always there to help him was a big thing. He found the idea that his life had fundamentally changed in outlook very distressing.

    We continued to talk over the weeks and we had very frank and stark discussions on our dog walks, such as how long I would live, how much I would suffer, how he doesn't like my loss of hair, how he found it hard to ask the right questions about what I needed etc etc. Over time we really got to accept a new balance in our relationship. We found it positive that he would become more independent (which he had always wanted but I was too protective of him before) so he now cooks, works the Hoover and enjoys it, feeds the dog, makes a lovely cup of tea (he has got really into loose leaf teas and is a bit of an expert) and makes lovely milk shakes.

    It's not all happy clapped obviously, there are dark times, but he has grown up in a way he might not have done had he not been pushed into it.

    I don't know what will happen as this goes on - the scan to see if they can operate will be key as he has this in his sights as a major event which will help the fight - if this is delayed or some other thing happens this will be a big problem for him. Meanwhile we just go on.

    I hope this is of use to your situation. Do feel free to ask or share anything else. We can all help support each other.

    I wish you and your family well.

    Netti

  • Thank you for replying. Like you and your son, we often have side to side conversations where eye contact isn't needed. Thankfully, he is already quite independent and able to catch a bus to work if I'm not able to drive him. I was more worried how he would accept any diagnosis or if his usual routine or me always being on hand altered. He hasn't for a long while, but can get violent due to frustration and I'm concerned that his brothers might take the brunt of his worries through violence. All I can do is wait and see what is happening on Thursday and then explain what I need to explain as calmly as I can, giving his the facts and leave him to digest them. Then, like you did with your son, give him the opportunity to come to me if he wants to find out anything more.

    Take care, xx

  • He sounds to be older so slightly different. We have had violent outbursts throughout his life too but climbing sessions and boxing apparatus have helped. Good luck and hope Thursday goes ok.

    Netti

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