Hello everyone, not been on for a while. Bit low and don't really have anyone to talk to. I was diagnosed 6 and a half years ago, stage 1V with lung mets and not given much hope. However I had 4 and a half years stable with normal CA125 after treatment. Had Stevens Johnson Syndrome 1 year ago ? reaction to Tamoxifen ?? due to relapsed cancer. Had 2nd line salvage chemo with good result, finished March, then had pulmonary embolism, now on Warfarin. My lovely husband who already suffers with heart problems and rheumatoid arthritis, has had a stroke. I am grieving for the people we where, the life we had although both poorly, and the relationship we shared. I am struggling to say strong and positive. Any ideas or suggested help would be appreciated. I feel like I have nowhere to turn. GP not much use, oncology busy and I feel this is a mental issue not medical to be bothering them. Parents deceased, sibling just going through diagnosis of cancer, friends seem to have drifted away, no children. Can't afford private counselling.
Thank to you all, sorry when everyone has so much to cope with, I feel such a failure.
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northerngirlbackagain
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First of all, you've come to exactly the right place as you have so many friends here who completely understand all the challenges of the last 6 years and sometimes with a long survival like that after a gloomy prognosis I'd imagine you hope it will never come back. You don't have to be strong all the time and sometimes we just need to have a good howl about things.
Online friends are wonderful but it's also good to meet people if you can. I wonder if there's a support group in your area, or a Maggie's Centre where you can join in activities and have a chat about the things that worry you.
I do think you should go back to your GP to discuss your mood because he/she may be able to prescribe something to get you over this hump and give you a bit of a breathing space. They can also provide a counsellor on the NHS, and I wonder whether this is also available in a Maggie's Centre.
The other place I think you might find really helpful is the Penny Brohn Centre in Bristol. I've heard really good accounts of this place which has day courses and residential courses. It may well give you a few days' break away from home and renew your spirits. They don't set a cost but just ask people to make a donation if they can. I don't mean to imply that your home environment isn't a very loving environment but it's just you both have a lot going on and can both perhaps do with a bit of a break. I've heard of other places that offer a break for people who are ill but not necessarily cancer. If I can find out a bit about them I'll send you some details in a private message.
I just thought I'd reply straight away as I can't bear to think of you being so upset.
with love and hugs, Annie xxxx
I'm so sorry everything seems to be falling apart at the same time. I'm not sure where you are, but feel the oncologist should have given you a support nurse you could turn to for help, if not ask them. Local support groups offer free counselling as well as a chance to meet others, so please look into them for help. The other option is the local hospice, which is not just for final days, they can advise on anything, so ask your gp for a referral if he won't help directly. I'm sure there is someone to elephant.
Good luck
in reply to
Viv, as Nelson Mandela said in that immortal speech when he got out of Robbins Island, I salute you. You are inspirational, wise and generous. Still giving to others after all these years. Love, Cxxx
so sorry you are feeling this way, it is awful I know, I have been there myself. Speaking to a counsellor is extremely helpful and will certainly help you lift your spirits. Your GP should be able to help you but also give MacMillan a ring, they have people you can talk to and they are so understanding and will give you all the help you need. I hope you find some peace soon. Big hugs and lots of love to you. Ann xxx
Depending on where you are you may find your local hospice has a counsellor. Ours does and there are no charges for her services. She also runs group services. The nearest MacMillan centre or MacMillan nurse should be able to tell you what's available for you in your area. I do hope that you get the support you need.
Love
Zannah x
I'm not a shrink (!) but it sounds to me as if you are having a natural reaction to a combination of hugely distressing sequence of events. Your own diagnosis and situation is bad enough, but to see your husband with all of his health problems have a stroke must be extremely distressing. Many people would be a quivering wreck with only a small portion of what you have had to deal with over the last six years.
We all grieve in a way after a cancer diagnosis - or any diagnosis of serious/terminal illness. The revised NICE guidelines for ovarian cancer say that all women should be offered appropriate counselling and/or psychological support. Current guidance for GPs - and GPs are bombarded with new guidances from one source or another almost every week - should have red flagged both you and your husband for extra - not minimal - care and support. Annie's suggestions are very good, but I would suggest first of all either you write a letter to your GP if you know her or him well, saying that you need some extra support and make an appointment to discuss your situation, or make an appointment with another doctor in the same practice and explain to that doctor. Write to your oncologist saying the same thing, asking for referral to a specialist counsellor or for her/him to call you back to discuss the issue if travelling is difficult for your right now. Also, call MacMillan and ask for a Macmillan nurse, or ask your GP and/or oncologist to arrange one for you.
None of this should cost you a penny. You have already paid for it in taxes and NI for however many years you both worked. Paradoxically for a women with ovarian cancer, this time NICE is truly on your side.
I hope things get easier for you both soon. Best wishes, Cxxx
So sorry you are going through such a wretched time at the moment. I don't have anything to add to all the advice our friends have all offered above, I'm afraid. Just want to send some big hugs ((((HUGS)))) and say hang on in there, and if you can talk to a McMillan nurse, things will look better soon.
With best wishes to both you and your beloved Husband, Solange
Can't add any better advice than the excellent words already been given, but just wanted to send you best wishes and support. We're all here at times like this and understand how sometimes everything just seems too much. Hang on in there, you are certainly NOT a failure. Try and get some practical help and I hope things improve for you soon. Keep posting.
I just wanted to add my hugs to those above. You are most certainly NOT a failure. Most of us would have crumpled if we had to deal with all the worries you have had. I do hope you can follow up a few of the suggestions your friends on here have given. Someone to talk to is so important, and a counsellor will be able to give you the time you need to see your way through the present. Do keep on posting, there are lots of us here who will want to know how things are going with you. You are among friends here. Love and hugs to you (((xxx)))
Not surprised you are feeling so low after everything you have been through. Sorry I have no advice to add but would like to send you my love and a big hug. Xxxxx
Hi, it sounds like you have coped with so very much and it is really brave to reach out for support. There's a lot of great advice above as well as care and good wishes. Your oncology team/ CNS may well be able to directly refer you to see an oncology psychologist- I've found this incredibly helpful and know of others in different parts of the UK who have found the same. Warmest wishes, Sxx
So sorry to hear that things have got on top of you, none of us know when everything we are going through will wear us down and you certainly have been through a lot lately. Please contact your local support group, I hope there is one near you, the first step is the hardest.
It is lovely to hear from you again I often wonder how you are. You were there for me when I started my journey nearly 3 years ago.
I am so sorry things have got so tough for you and your husband. There is help out there it is just finding it sometimes. You are not a failure in any way. I think women especially feel that way when things go wrong as we all are usually so organised and in control. Illness affects this so much so it is not your fault in any way.
I found a lovely palliative care nurse through the hospital. She is not a Macmillan nurse but does the same thing. Talk to a specialist nurse at the hospital and they should arrange it for you. She has been a godsend talking to me and advising me.
You can get free counselling through the NHS so do speak to your GP for a referral. I am also here to talk to if I can help. I will PM you my phone number as BT used to say it is good to talk!
Thank you all so much for your kindness and support. I think it was one of those sad days when everything just seems too much. I am a positive person most of the time but my husband being ill has upset me the most . There is no counselling at the local hospice and the nearest Maggie's centre and support group is a round trip of 50 miles, three bus journeys and 2 hours each way otherwise I would have used this service. I live in Nottinghamshire so the centre in Bristol is not practical either. I think my options are limited to GP but I worked there before I became diagnosed so as silly as it is I feel a bit funny about going there. I was thinking about changing GP anyway but with so much going on it has been put on hold. I will seek some help after the bank holiday as I do see now that I need support and I am not just being weak. Thanks all once again it meant a lot to me.
I am not surprised you are feeling low, you must be physically exhausted with all that going on. You are deffinately not weak and the doctors etc do appreciate that its not just about the physical stuff and that this is a stressful situation to be in. My oncologist referred me to the hospital's specialist oncological psychologist (counsellor) when I was finding it particularly tough. Evidently my hospital also do beauty treatments, reiki etc, all at no cost, for cancer patients.
If you feel weird going to your former employer, maybe you should contact your hospital oncologist and find out what services are available through them. You may even end up getting some pampering as well as someone to talk to!!
Take care and I personally think that asking for help is actually a sign of great strength Vx
Hi, I'm glad you've realised your not a failure, your just reacting to a very bad sequence of events. You are a strong lady to have gone through all this, don't ever think you are weak. If you can't access anyone to talk to try writing your thoughts down, it helped me feel better writing things down gives you an outlet to write your feelings down & I find it helped to rid me of some of the negative thoughts I had. Hope you start to feel in a better place soon. Love Sue.
Just a big squashy virtual hug for you northern girl - you were really really low, weren't you! The above string of advice says it all. Please please dont be alone - here in the virtual world you are already not alone, so KEEP POSTING. We are really very chatty and I think we have the world's wisdom enshrined in the minds and memories of these amazing women. But in real life, you need to take control. The distances/logistics do sound tricky. Really think MacMillan might help here, they assign buddies routinely and above all I reckon you need connections into established support networks, even if they are a bit distant.
Just a thought but - you cannot be the only person living with cancer nearby. Even if not just OC you could use some of these networks to find other women and start your own. A group starts with two, as long as there is a kettle and packet of digestives handy... Just a thought.
I am sending you my great big hug also (((((x)))) and would
like to add that I went through a really tough time at the
beginning of this year and just couldn't pull myself out of
depression.My oncologist made me an appointment with
a psychologist at the hospital and I found this really helpful.
I also had to see my GP for antidepressants...which I didn't
want to take but honestly have given me the boost I needed
to get back on track.
You have been through such a lot and no wonder your
feeling low you need someone to talk too..it really does
help.
Sending you my best wishes
Angie xx
Hi and Welcome back. When I joined this group last year after being diagnosed Stage iv your story gave me so much hope, and I have often wondered how you are doing since you left. I think it would be surprising if you didn't feel depressed after all you've been through and can so understand the feeling of grieving for the people that you were. In my experience, the oddest things can help to feel that you have reclaimed a little of that person! I used to be a great walker and after frontline chemo and 2 surgeries could barely hobble around the block, even when chemo finished. A couple of months ago a friend took me for a walk around a reservoir and I did 4.8km. I felt as if the world was at my feet again, and though I have recurred and am having chemo again, I try as often as I can to do that walk to build up my strength. We even bought an elliptical trainer a couple of days ago - a new challenge.
Is there something that you could do, or a new interest that you could take up to lift your spirits a bit?
Would you be prepared to take anti-depressants for a while?
And you do have somewhere to turn - you have this group.
Am off to bed after a tiring day. Hope Saturday is good in Singapore. Holiday weekend here. Cxxx
in reply to
No, I hadn't seen it. Thanks, very interesting. August Bank holiday already? Time flies! Enjoy the weeked.
Monique x
Hi there..I imagine, with what you've had to go through and are going through, that your reaction is normal. I have no children either (though I was in treatment for 18 years) and since my parents have now gone, sometimes I feel that I'm in a time limbo with no past and no future. I too sometimes grieve for the person I was but then I feel that I've grown a new depth which I quite like living with. I feel that some women with this disease have the support of their children which is a feeling hard to replace. However, it must be very difficult too knowing your children are suffering with the illness too in a way. I live very much in the present now and I feel it's made the way I live more vital despite what this disease has done to me, I mostly feel that with acceptance, I can cope on a day to day basis. I was referred for psychotherapy because of the way I felt (it's a long story about not being diagnosed despite having written to the hospital asking if I had cancer) and it all helped. In the end, I decided that I must try to come to some kind of acceptance and resolution to not have the feeling you have today. It's easier said than done though and I do have some pretty mixed or difficult days. Take very good care... Love Tina x x
You have had such a lot to deal with, I'm so sorry. You have had lots of good advice from the other ladies and I can't add anything so am just sending love and hugs.
Hello! I am afraid I don't have any words of help or advice but I do understand how you feel. I have been feeling pretty desparate myself recently. I am also a Northern girl in a similar position to you having lost my husband to luekaemia shortly after my first line treatment 3 years ago, no living family and my friends seem to have drifted away too. I think they can't handle the situation. I have tried to talk to McMillan nurses but what I really miss is the support of my husband and I suspect that is your main problem too. Sorry I can't help but I do absolutely understand. Pamela xx.
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Will someone please hold the world still!
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Talking about death
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