So I know I've posted a couple of times in the last 2 weeks but I can't seem to be positive at all at the moment. In the space of 2 weeks I've gone from being NED for over a year, to having nearly 6 litres of ascites drained, a CT scan, waiting for an oncologist appointment on Friday and having more ascites drained. When I was first diagnosed I kept positive, tried to be as upbeat as possible and this time I can't stop crying. The pain in my abdomen is excruciating - I definitely did not have pain like this last time. I've convinced myself that I'm going to hear the worst news possible on Friday as I can't believe how quickly all of this has changed. I'm only 42 and I'm terrified of being told I am not going to be around much longer for my 14 and 16 year olds. Sorry to be so depressing but I can't really tell my family how I am feeling as I don't want to frighten my kids (any more than they are seeing me cry all the time!) currently watching Christmas films to try and cheer myself up!
Can't shake this mood.: So I know I've posted a... - My Ovacome
Can't shake this mood.
Hi Beckyjh, I am so sorry to hear you have the blues. You have every right to be worried & feel low. I hope someone is going with you on Friday it's so stressful waiting to find out what going on. I am not a nures but could it be an infection?
I know how you are feeling. When I first found out I had oc I was very postive & took my treatment well but when it came back this year I have been really low. I hate it when I am told to cheer up, its easy for them they are full of good health I am not.
I wish you all the very best for Friday fingers cross its nothing bad. Take care love Cindyxx
So sorry you are feeling like this. I got low when I first recurred, but that was more than 3 years ago. I'm on chemo now for a further recurrence but I'm still around for my daughters, though without the energy I'd like to have. I hope there is some good news for you soon and that there is effective treatment. It' s just too hard to stay positive all the time. I saw a counsellor, just a couple of times, when I recurred and it did help. I find it hard to talk to family and friends as I tend to try to protect them.
Oh Becky
I hate this bloody disease! It's just awful...you should be looking forward to a lovely Christmas with your teens not crying on your own. Have you got a support group or a Macmillan nurse you can talk to?
I am not suggesting that things will go badly..perhaps your onc will have better news? But it is scary and you need people around to talk to...
All good wishes to you Lxx
Hi Becky, I don't know how you feel as I've not had a recurrence and not walked in your shoes. But I have spoke to my oncologist about this. He reassured me by saying if it comes back we can fight it, I did react well to chemo. He also told me he had some ladies that he's been treating for 16 years. Theses ladies had stage IV OC.
So I'm thinking if mine comes back then I'll be prepaired to fight it again, I'm not saying it's easy but we have to do this.
I have a young cousin who spends 4 days a week in hospital as she's on kidney dialysis machine. I asked her how does she cope, her reply was I have faith and hope and believe one day I'll get well.
I hope your outcome isn't what you think and you will get your positivity back soon. Xxx
Hi there it's understandable that you feel low and worried, once you get the results from your oncologist you will know what's going on, the not knowing and waiting is horrible. Sending you a big hug and the very best wishes for Friday
Karen
Xx
Hi, I am so sorry to hear you are feeling so low. This forum is a place you can share your feelings and I wish I had found it sooner. Do you have any local support where you are or someone you can talk to maybe away from your family? I feel extremely low too just so your post connected with me. Maybe it is the time of year? And that pressure plus the uncertainty of it all. I feel like I have gone into a cave too, that the outside world seem to all be celebrating and inside I feel like screaming or crying. I wish I could reach out and help you but please know we are all here to help you and am sending you so much love. Have you tried any guided YouTube meditations? I find these really help me a bit and for an hour Or half I can be transported elsewhere. They are also relaxing and will do you good. So much love to you xxx
I think we feel lower at recurrence stage than at diagnosis. However once the acites is sorted and a plan for treatment in place you will become a little more optimistic. It is okay not to feel okay, perhaps ring the Ovacome Nurse or see if there is a Macmillan centre near you. Sometimes it is good to speak to people outside your family circle as they are neutral and dont judge us, I found it helped me enormously, I wish you well
I often hear the recurrence hits harder than the initial diagnosis, but there's no reason to believe you're anywhere close to the end. in fact those that have had decent lengths of NED as you've had are statistically more likely to have another long remission after 2nd line treatment, so the odds are in your favor.
With various chemos, immunotherapy, Avastin, and even drainage kits, Ascites has become a lot more manageable.
I know it's hard to see the positives when you're down, but things will get better, and I can tell you're strong willed.
Hi Becky,
I live in dread of a recurrence and those 'blues' are damned difficult to shake.
Sending love and big positive vibes your way.
Keep us posted,
Debs xxx
Hi Becky. After 4.5 years I had my first recurrence and it felt much worse than the initial diagnosis. The depression hit like a steam train but once you have a treatment plan in place things will improve and just so you know, you can achieve a longer remission after recurrence so take that positive thought and hold on to it xx. I wish you well, do let us know how you get on. Kathy xx
Just to reinforce what others have said - I found my first recurrence much harder to deal with than the initial diagnosis and was full of gloom. I think this seems to be common to all.
This is a really horrible disease and none of us fully realise it to begin with.
Mind you, if I started watching xmas films to cheer myself up, that would finish me off!
I can't believe the restaurant playing xmas music on the 7th December. The food was nice but I felt like leaving.
It all just makes me want to hibernate away from the rest of the world and not spend any money. Bah humbug!
Good luck on Fridayxx
For any of you ladies above on Facebook, I have been have coaching by an amazing cancer coach, who went through it all herself. She has now set up a 'moving forward' Facebook page for support and does weekly free webinars and chats and Skype webinars. I have to say, it is brilliant. If you are interested, please let me know? She really knows her stuff, is realistic, honest and very, very encouraging. Xx
Hi Nicky - would love to know how to access the "moving forward" facebook page - would you mind sharing info on how to find? Thanks so much! Janice
Of course! I will find the link and add it here! Hope you are well and ok xxx
Hi Janice, sorry for the delay? Here is the link and more details!
1. you can add anyone you want to the group if you know they're on FB and their name 2. you can send them the link to the group, they click request and I just click to approve them Moving Forward from Cancer 3. if they're not sure or keen to join here (ever or yet!) feel free to give them my website where they can access some of the webinars and blogs. coachingemily.com 4.
4. They can like the coachingemily business page which also has resources on it (but less than in our group here) facebook.com/coachingemily
Or...5, they can always email if they'd like to connect directly and/or ask about coaching services: emily@coachingemily.com
thanks so much!!
Good luck for Friday, whatever your oncologist tells you try to take some encouragement from being seen quickly and if the news isn't good then at least your treatment plan can be put in place quickly too. Christmas is one of the most depressing times possible if you're in a 'bad place' in my opinion and I can bawl my eyes out at some of the ads never mind the films. Really hope that after Friday you have some concrete information to work with so you know just what you're dealing with, imagination is sometimes an awful thing that can get out of control and make thing what they're not. Take lots of care, you don't have to be brave but do try to be positive, it really can help. ❤️Xx Jane
Becky,
I know how do you feel. Stage IIIc diagnosed March 2015. By accident, I just went to doctor to check out and get ready for pregnancy. I was 37 years old, very healthy, energetic girl, mum of 4 years old boy. Went very extensive, 10 hours debulking surgery, followed by chemo. I was cedar for a year. This summer I felt like I'm coming back to my life... In September I found out I'm in recurrence. Cancer is spreading aggressively in my body. I'm just after second session of caelyx/carbo. I'm constantly in bed last 5 weeks. This chemo is killing me. My stomach hurts, all my abdomen hurts. I have a feeling that this cancer is having a ball in me and just growing and growing taking my life away. Hard to be positive and hard to fight when everything goes against you. And my little boy is only 6 years old and nearly last two years he remembers me in bad form, in pain, lying in bed...
Take care, we have to fight
Hugs, xxx
Zaneta
Becky
It's quite ok to feel as down as you do.
Ascites are horrible horrible
I wish you lots of luck on Friday and sending you loads of love
Judy xxx
When I had my first recurrence, I got very weepy for a while, & couldn't feel positive at all, but after a while the mood began to pass. Hope yours does too. I wish you well. Di
If you are in the UK, you should have access to an oncology psycologist / specialist counsellor... As others have said above, you are dealing with considerable trauma and pain so your feelings are completely appropriate (in fact you are probably managing your feelings extraordinarily well). Do consider asking your CNS for a referral for additional support. I did and it made an enormous difference.... (You do have to ask and even 'shout' a little sometimes) You may also find similar support and groups in Maggies, through Macmillan or based in a local hospice.... I know when things seem overwhelming, it's the hardest time to reach out but you've already done so here, which is great... I found it really vital to be able to share my thoughts with someone who I didn't care about, and also such an important thing to be with others who are dealing with similar- holding things back can be overwhelming and incredibly isolating but as you say, those you love are sometimes not who you want to share everything with. Wishing you hope and strength, Sx
It sounds from the other comments as if you are not alone that recurrence/suspected recurrence hits you harder. I can't add too much to that as I've not been NED since diagnosis anyway.
However, I can comment on pain. I had horrible pain pre-diagnosis. It was a very consuming pain. I found the post surgery pain was significantly less bothersome and I kept getting into trouble for not taking enough painkillers post surgery (even though I was repeatedly asked if I was in pain and I responded with "only a bit and I can cope with it thanks"). But I've not had that pre-surgery pain again yet so surgery did remove the thing that was causing that pain successfully.
So, what I'm saying is the level of pain you have this time is not really an indicator of whether you are in a better or worse position than previously. It's different to previously, but that doesn't mean that it's worse. It also doesn't mean that it can't be treated successfully. I've no doubt that it's adding to your distress overall. It's very hard to try to be upbeat when you feel like something is trying to pound it's way out of your abdomen.
Hope all goes well with your appointment tomorrow and they can give you some answers.
I found a hot water bottle did take the edge off it for a short while. Even a few minutes of lesser pain was a relief.
Becky I'm a bit late in the day seeing your post, I am so sorry you find yourself in this situation and it's perfectly natural to feel as you do. The way things can change so quickly is very frightening, I know, the loss of control over our lives, the physical symptoms, and the uncertainty about the future - it is all hugely traumatic. Since my recurrence I have found counselling to be almost a necessity as I have become less and less willing to talk about things with my friends and family because either they get so upset, or they obviously find it very uncomfortable and don't know what to say. It may help you, even just while you are coping with the shock of the recurrence and possibly beyond.
I know that feeling of dread before going to see your oncologist, sometimes the not knowing is the worst thing. I hope once you've got a treatment plan in place you will start to feel a little better. Wishing you luck for tomorrow and sending you a hug,
Madeline xx
Hi Becky
I totally empathise with you. Recurrence is more upsetting than initial diagnosis. First time round its all new and you are ready for the fight. You have many things to remember and follow all the instructions. For me I felt my body was healing with each session. Then I got nearly 5 years NED so happy days I thought. Until this year when all hell broke loose again. This time only completed 5 rounds of Carbo only so I will also be given news a week from now on scan I had yesterday . I am much older than you Becky so my heart goes out to you and your boys. I will pray that tomorrow's news will be positive for you and that you can start smiling again. Take care
XXX
Hello Becky, so sorry to read how you are feeling and am sending you big cyber hug to help you through theses difficult days. So wish we could all get together to laugh, cry, shout and cry a little more, but this forum does help us get somewhere close to that. Not sure if you are interested but please do a little research into a medicinal mushroom called Ganoderma that might help you in numerous ways. If you are keen to try it please ensure that you buy it from a Chinese acupuncturist as they generally have the purest form. Stay strong and all the very best for your appointment today.
x x
Hi Becky
I know exactly how you are feeling, I was diagnosed at 40 in 2012 and kept fairly positive throughout my op and chemo, then I recurred last June 2015 and had ascites for the first time, had 3.5 litres drained off (it's horrible isn't it) then got a gastric flu thing from the cancer cells so was in hospital overnight on a drip with dehydration. It is so hard but in December last year after 6 Chemos I had the NED result so there is hope and I'm crossing everything for you for today. I'm 44 now so I also feel too young for all this, it's a hideous disease!
Good luck Becky and keep me posted!
Jo xxx
Hi Becky - I am so very sorry that you sre going through this - i have found a great book called "Radical Remission - Surviving Cancer Against All Odds" by Kelly A. Turner, PhD, very helpful; the book is about a clinical trial that she conducted with hundreds of patients who have gone into long term remissions and/or cure, contravening everything that they were told by their oncologists. She did extensive research around vommon themes that all of these survivors had in common and grouped all of her study participants responses into 9 key factors - I have found the book helpful & instructive and she also has a "Radical Remission" Facebook page. I've also found Anne Lamott's books very helpful - best of luck to you and pls keep us all posted as to how you are doing - Janice
Not what you're looking for?
You may also like...
Shakes when coming off steroids
Low mood
Ascites drained but stil can't eat
Weekly Taxol And permanent drain
Pleurex Chest Drain Removal
What to do when you can't get in to see a GP?
Update - Abdominal pain and cramps - results of scan
Now have my plan but I'm so scared!
Bravado gone. Need help/info.
