I’ve not posted before but have read a lot of your messages over the last two and a half years . I think you are all stronger , braver and more positive than I am / have been and am in awe of how you all cope so well .
I had stage 4 ovarian ( high grade carcinosarcoma which is rare and doesn’t even appear on the ovacome ‘ types ‘ of ovarian cancer ) . I also had stage 4 endometrial high grade serous … but they can’t be sure which is stage 4 so I’ve been treated as if both are .
My battle has been mental , compared with lots of you ive had far less treatment .. major debulking with splenectomy , Avastin and now olaparib and my ca125 and Ct ‘s have been fine …. But I’m so fed up with the peripheral neuropathy I’ve been left with , the panics and depression ( treated with antidepressants and benzodiazepines … which I’m now trying hard to cut down on but have to go slow or all the panic comes back ) , I’ve had urinary infections throughout ( was my presenting symptom but clearly wasn’t related as it turns out ) and have had a cystoscopy to confirm chronic infection ( cancer ruled out ) but the bladder pain has been excruciating for the last 7 months and I’m exhausted with the combination of drugs and olaparib and neuropathy and bladder pain . I’m so negative and I know I am but can’t ’snap ‘ out of it and enjoy life as I used to . I was so active and cheerful ( mostly) . I’ve a medical background so know all the statistics and find it hard to accept the positive attitude of the oncology team . I’ve just had enough and I’m only just at the start and the uncertainty re the future is torture . I know a day at a time but even a day sometimes is hard to get through . Though I have had some good ones . I don’t know why I’m writing this now , I suppose I want some ‘ connection ‘ … I find my friends don’t understand as I look fine and my family are either in denial or think I’m ’cured ‘ . They are getting on with their lives as it should be ( my adult children ) and my husband is off on his golf trips again so I spend a lot of time alone . Not good for me but can’t seem to face ‘normal ‘ healthy , active people and def don’t want their sympathy . Am I so unusual ?
I’ve tried the helpline a few times but always get answerphone message .
Don’t think there’s anything left for me to try … I’ve done the psychology , medication and had a good friend with cancer ( not ovarian ) and we supported each other for a year but she died so I don’t feel I’d cope with support groups very well either .
I’m so lost really .
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You have been through such a lot more than it’s fair for anyone to go through but you are still here and reaching out for a connection which is very brave.
Having 7 months of excruciating bladder pain is enough to send anyone over the edge without the ‘side’ dish of cancer treatment and ongoing uncertainty.
I too have severe neuropathy (started day 6 of first infusion). I cannot remember what it actually felt like to walk before now without feeling unsteady and as though I have pebbles under my feet and the constant throbbing at night 😩 that’s without the issues in my hands. It’s very hard to explain to loved ones and you can only tell them a certain amount of times can’t you 🤷🏻♀️
That’s why this forum is so wonderful. Nothing is off limits to discuss and everyone can understand and sympathise as they’ve lived the experience. At the end of the day as much as anyone has support you can only truly understand if you’ve LIVED it.
I’m sure you will get some good advice from others, maybe try other helplines to talk things through like MacMillan? A trouble shared is a trouble halved.
I hope you start feeling a bit more positive soon. Xx Jen
Thank you Jen , just to hear one other person say they feel like they are walking on pebbles is so helpful , it’s exactly what it’s like , thank you so much for your reply .
PS Xepin ( Doxepin ) cream 5% recommended by pain specialist from Marsden stops pain at night if applied a couple of hours before bed , GP can prescribe , if you’ve not already tried it of course . X
Oooh thank you for that - all I’ve been prescribed is pyrodoxine (vit B6) and gabapentin which I didn’t get on with, so I will definitely ask GP for this x
I am so sorry that you are suffering like this. I agree with SuffolkJen that the bladder pain alone would drive anyone doolally!
Could you bear to talk to your GP about how you are feeling?
There is lots of support out there: Macmillan, your local hospice (not just for end of life care) and many others but to get help someone needs to listen to you and make the connections you need.
Your oncology team has a responsibility for your well-being as well as your treatment.
If you can’t bear to talk then write down how you feel, just as you have here and give your words to people you trust.
This could be your cancer nurse or even a friend. Don’t suffer any longer on your own…get help now.
You can feel better than this and with the right help you will xxx
Thanks they are all trying their best , bad day , I often feel better / safer when I talk to the oncology team . Maybe shouldn’t have posted when having low day . GP very good too , I have a lot to be grateful for . X
I am glad there are people around you, but it can still be so isolating. You are only articulating what all of us feel from time to time.
It was only when the hospice nurse prescribed anti anxiety meds that I felt someone understood how frightened I have been along this journey, how many times I have lain awake in the middle of the night xx
Perfect to post when you're having a bad day. That's what the forum exists for. I struggle with negativity as so much has gone wrong throughout my treatment. We're all just trying to be strong, not always succeeding. Like you, I had a friend with cancer who died - she had pancreatic cancer. She remained positive throughout but it didn't help her. I miss her and the support we used to give each other. Also, like you, I present as healthy and all my friends want to celebrate if I get the all-clear but I was only NED for 4 months so I don't want to get all excited. It's sort of disrespectful to the cancer. My sister is my rock. I hope that you can find someone to be that for you. I do recommend Macmillan too.
Yesterday I asked about survival statistics for my two strains of OC and I was told I'd already passed them. Only been four years. Didn't need to hear that as I feel like a dead woman walking. Oh well.
Sounds like you're feeling a bit better now. Virtual hugs. xx
Yes, you do have a lot to feel grateful for PWT1, as all of us do. We are all still here, researchers are constantly finding new treatments for us to try and we must embrace the life we have. We all have times similar to your own and we need to vent our feelings at times-it is certainly better to speak/write about your feelings, on this site, and emotions rather than bottling things up which will make you feel much worse. I do hope you are able to make contact with your GP and tell him/her exactly how you are feeling both mentally and physically (you will need to be 100% honest). Also, please contact your local hospice, they will help you with a great deal, talking and mental therapy, pain management, various holistic therapies and just speaking to staff and patients it will bring you outward looking instead of constantly looking inward. You have this dreadful disease, through absolutely no fault of your own and it is tough, really tough however, we all must stay strong, focused and determined there are many many of us living with stage 4 and it is the most difficult part of ‘living with cancer’ - but we are living with it NOT dying from it.
I do pray that you are able to get some help, reassurance and people to speak to. It’s no easy journey we are all on but please speak up, be your own advocate - you are the most important person in all this and never ever give in or settle for second best.
It is understandable to feel dreadful. It is a cruel and at times intolerable fate we have unwittingly acquired.
We have little control of our bodies betraying us but we can influence our minds and I am sure you will find a way of optimising your time. I found comfort eventually of being reminded that life is finite for everyone; we are given a very brutal reminder of that. I am learning to maximise every day and allow the days of despair to pass. I also realised that managing the brain is very much an ongoing process. Even after I thought I was ‘sorted’ the feelings returned.
I haven’t suffered from peripheral neuropathy thankfully. I have heard of the benefits of acupuncture and yoga to manage it.
The Ovacome helpline is worth persevering with when you can.
Macmillian were also funding BUPA psychotherapy if still available.
Talking with people who are not part of my previously life allowed me to fully express my fears.
Hi. I felt sad reading your post. Even putting the cancer aside and treatment the UTI issue you’ve had is enough to make you feel low. Have you tried counselling ? I would suggest you speak with your oncologist or even approach your local hospice or MacMillan because you really need to speak with someone who can help you deal with your feelings. I’ve had peripheral neuropathy for nearly 17 years so I get how that makes you feel too. Feel free to PM me if you want. I was diagnosed 3B HGS OC in October 2007 and given 2 years, obv still here! Oh and I’ve been taking Olaparib for over 10 years on a clinical trial . Big Hug x
Hi Nicky. Great to hear from you. I’m doing good thanks. I’ve been trialling Olaparib since January 2014 and have got to the point that my Consultants keep asking if I want to stop as they consider me cured! Big decision! How are you doing? I hope life is being kind x
I hear you. The positive thinking mantra drives me spare - although I know it helps many. I like to think I'm an optimist but a realist. This beast is relentless. It's easy to lose your power to it. Feeling unwell or in pain most of the time is no picnic. I'm finding things that nourish my soul - and sometimes my body. No doubt you have a few of these but they are not reachable today. The panic and anxiety thank goodness has not hit me yet but has hit a friend who is further along her own brutal cancer path - I know it is very common so you are not alone. Thinking of you.
Hi. I get how you’re feeling. I’ve felt much the same on and off over the past five years, but being on Olaparib was the worst and it was only a half dose. It’s a miracle drug and kept me ned for the three years I was on it and one year after (I took it after first recurrence). I’m wondering if stopping it would help your mental health ( though it might be bad physically). To be honest my anxiety decreased a lot once I got the recurrence I’m on now. It’s horrible waiting and worrying. Maybe you could try a break from Olaparib and see if it helps? Sending hugs.
Adding my hugs to those already sent. I agree that it's worth seeking some counselling - also have you had any specialist treatment for the bladder issues? GPs can get so far but I can't help thinking that if you had some control over that, you'd feel better. All that said, it is OK to give up (or give in) when you get to the end of the line. Worth a call to hospice for that reason alone, as they are about living well, not just dying well.
I’m sorry to read you’re feeling so low, it’s completely understandable and we can all relate to how you’re feeling. It’s so tough and the treatments can leave us with long lasting effects, and mentally it’s very difficult.
We all get these days but for me I’ve been making a conscious effort to enjoy the good days and live in the moment. None of us know what lies ahead and now I try not to think too far into the future. I had to shift my mindset from being a long term planner to setting short term goals such as little trips away, weekends out in nature for example. When my recurrence happened and I shifted to living with cancer, in some ways I’ve accepted that more and my anxiety is less, it’s happened and I have treatment options and now Im making the most of the good days and really just putting one foot in front of the other.
Counselling might help you or is there a gynae support group in your hospital or a maggies centre nearby? They were brilliant for me when first diagnosed. You will have better days ahead and I hope you are able to reach out for support and feel better soon, sending hugs Xxx
I have just started round 4th line chemo and fortunately have not suffered severely with issues that you have had, but on this forum you are with friends who understand. Of course you must speak to your team and GP. The other help that I have found is Target Ovarian Cancer and through that group I have personally met 3 other ladies who live fairly local to me. We support each other and sometimes meet for lunch or coffee. Most importantly we understand each other: just a thought. 🙏 Katy
Thank you so much for posting on a bad day. I think we need to normalise feeling sh*t through this. I had a friend at work when I was in treatment last year and her wife had been given the same diagnosis as me a couple of years before. She was so kind and understanding and really got me through some bad days. When her wife died it affected me so much more than I expected because not only is there the grief of someone dying (although I didn’t know her personally) but also there’s the complicated mix of terrifying feelings that it might be me next. Its ended up that I now don’t see my friend because it’s kind of too much for both of us.
Along with the pain and other side effects of the brutal treatment I’m not surprised that you have had enough. It’s a psychological survival mechanism to shut down when it’s too overwhelming to process everything. Some good, longer-term therapy might be helpful if you’ve got anywhere locally - the 12 sessions I had were okay but didn’t feel enough.
If posting here helps to process it by putting it into words and the replies feel validating then keep doing this! Bad days, good days, meh days, sometimes connection with people who get it is what we need. Take care xx
As well as cancer support, have you considered a chronic pain support group as another way of making connections with people who understand? When I was suffering with severe anxiety, I tried various things (anti-depressants, CBT, mindfulness) but, long-term, it was a support group who helped the most.
My name is Anna and I'm part of the support team at Ovacome. Usually we're not on the forum over the weekend but today we are running a health and wellbeing day in Liverpool and so I was logging into the forum to show people who might be interested in joining.
I am so sorry to hear about the difficult time you are experiencing. You have had some lovely replies from our friendly and supportive forum members. I'm sorry you have reached the answerphone when you've called us. We don't return missed calls but we will always return a voicemail message, usually the same day and sometimes the next working day, but never later than that. Please do leave us a message and we will always call you back. (Monday-Friday 10am-5pm.) You can also direct message us through the forum (OvacomeSupport) or email support@ovacome.org.uk to set up a scheduled support call or videocall at a convenient time to you.
I'll be the only support staff member in on Monday so if you call 0800 008 7054 it will be me you speak to and we can talk through anything you would find helpful. You can also call me on my direct line 07586 247 310, 10am-5pm Monday to Friday. Again, please leave a message if I don't answer and I will call you back. The rest of the week it will be me or my colleagues Cathryn and Alice that you speak with and we are all here to support you.
hello she I feel exactly like. You the depression for me, and the friend thing it’s not there fault, but I to can’t seem to get into any normal life, I try but sort of fake it, my hair is growing a bit now only 3 months after last chemo what antidepressant are you on, I am on mirtazine 15 but will go up to 30 today, having the McMillan councilling not really helping, because I know what I should be thinking and doing anyway I still think it’s up to us with the mind. For you does sound positive. Keep going with what the doctors say, if they are positive. Love pat
I'm so sorry to hear how crap your feeling. But as others have said, vent, vent. The forum is amazing & I am here just to say your not alone. I am a newbie not on this sh*t journey long. Stage 4 diagnosed last June. The only thing keeping me going is my children my youngest is 10.
The winter has been so crap, but hopefully the summer will be good.
I think a good idea is to speak to a chronic pain specialist. There has to be something they can give to help with the pain.
I just want to add no one really knows the future you really do have to live for the moment if possible all our friends, may have things in the future. If it is possible we have to look at how bloody far we have come , best to not be left alone for to long keep busy I can’t talk I am my worlds worst enemy. I mean I was told it’s a good day you are getting your picline out. Really is that it you. will be better tomorrow xxx love pat or tomato whatever my name is on here.
I think you did exactly the right thing, posting on here, especially if you’re having a bad day. I’m not surprised that you’re feeling really low. You’ve got an awful lot to put up with. I do hope some of the suggestions here will help.
Don’t rule out a support group. Our (peer-to-peer) support group focuses on well being and positive support and we get some input from our CNS team….maybe a support group linked to some nurse support may help. We often find it helps to talk to people who know exactly what it’s like. The ovacome website has a list of support groups.
Long shot here:- tai chi works on similar principles to Chinese medicine and acupuncture and has been found to help some cases of neuropathy. We do chair tai chi at our support group. If you can find a sympathetic tai chi teacher, it may be worth exploring.
Whatever you do, (or don’t do), don’t stop posting on here. There will always be someone to help.
Hi PWT1. It's 4:30am here right now & I'm sitting up in bed rocking, waiting for my gut pain to pass. Not sure what's causing it. I think it's trapped gas so just had some De-Gas & hoping it helps. It's been ongoing for quite a few years & no-one seems to be able to give me a definitive answer. I had my last chemo on Friday & I do think that exacerbate s it. Anyway, my family & friends will tell you that I am the most positive & bravest person they know but they're not here at the moment to witness how I feel & to be honest, I don't need to share this with them. I need them to be positive for me. I'm watching my 95 year old mum suffering with post GBS peripheral neuropathy that is so bad, she can't stand up or walk or hold anything in her hands. She is very negative & I selfishly find it hard to talk to her sometimes. Basically, what I'm saying is there are times when we are all things to ourselves & others, positive, negative, supportive, resentful. We're human. Don't be too hard on yourself. Swings & roundabouts! But I'd be destroying your husband's golf clubs. It might make you feel good for a little while 🥴.
Sometimes only ‘the kindness of strangers’ can shake you out of this. May I suggest, (please consider) the Penny Brohn Clinic. To meditate, to learn, to simply rest.
I want you to know that I have read your post and am sending you strength. I don’t have wise words or great solutions but I do not want you to feel alone. You are stronger than you know.
Have you considered that you may be suffering from depression and may need medication to lift your mood for a period of time? For different reasons I was very, very low a few years ago and being brave enough to tell my GP how I felt saved me. Medication and talking therapy helped. With most GP surgeries you can self refer for counselling now.
Have you tried all the cancer charity helplines. Someone there may be wiser or more helpful than me. Obviously Ovacome but Target Ovarian Cancer, Eves Appeal, Penny Brohn, MacMilland and Cancer Research should all be able to help.
Various charities offer activities and wellbeing online or in person as well as support groups. Maybe sign up for a few to see if they help. Penny Brohn also do in person days and weekend retreats at their centre.
I hope something helps.
Remember that a journey. Of a thousand miles begins with a single step.
Know exactly where your coming from with everything you've said and I wish I had an answer. From experience just cope with one day at a time. There are good days but not how you used to be. I take an antidepressant every morning sertraline. I also keep in diazepam for those days when I just can't cope with it all and I need to get myself to a calmer place. It's a very lonely path to tread. Everybody if you look good assume your in remission and others just don't know what to say. Family want to get on with their lives of its been going on a long time. I'm nearly 5 years of constant treatment and have a terminal diagnosis with bowel blockages from the peritoneal ovarian cancer. Now inoperable. Had counselling which didn't help but now I go to a hospice pamper afternoon once a week with a group of about 8. We chatter we laugh and we all know where we are coming from and we give each other support if we need it. Mainly we get away from cancer in that time and have a chance to feel Normal. I love those afternoons and always come out feeling good. Sending Huge Hugs. Keep Strong and you can do this...........🤗💙
Hi. You say you are medical so please can I recommend you start looking into how Integrative Medical doctors look at cancer. My favourite person is Dr Nasha Winters who had terminal OC at 20 yrs of age and is now 47. She was too sick for chemo so saved herself through fasting and supplements.. Her book the Metabolic Approach to cancer is life altering. I suspect your gut microbiome is messed up and you are not absorbing Vitamin D and any or all of the vitamin B's. Remember high blood levels of vitamin B do not mean that the supplements you took reached the target organs if you cannot methylate. What if your depression and neuropathy are being exacerbated by nutritional deficiencies and not your illness? Your gut manufactures serotonin so dysbiosis causes depression and chemo and antibiotics cause dysbiosis. Lumbar neuropathy triggered by the same treatment you had also gave me an irritable bladder and I later realised that I had lumbar shingles (chemo immunosuppression) which registered as aa abdominal burn and the desire to pee! Anviro (shingles), methylated vitamin B, vitamin D3, salmon oil (omega 3 only) and if all else fails Lyrica for the shingles pain. Please tell me if this helps you at all? Chemo is so toxic our bodies need care and support to fully recover.
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Have you had chemo via cannula?
Ovarian cancer stage 4
Had my penultimate chemo today but had a shock!
Is my CA-125 getting low enough?
Not suitable for surgery
