I am sitting here crying as I write this . It is such a beautiful sunny day but I am devastated by a phone message I just listened to 20minutes ago. I had been waiting for results of CT scan which was done exactly 2 weeks ago today. Although I was hoping that as it took so long to get back to me that all would be well now it appears that my lymph nodes are enlarged and that this indicated recurrence. Of course as with this disease I was on one of my many trips to the toilet I missed the call . I rang back to get a voicemail that said no one in the surgery until tue ! I am all alone until this evening and I cannot get any of my friends . I don't want to tell my family just yet . I am now waiting for my GP to ring back. I just needed to tell someone and I thought of all you lovely women first. Please pray for me.
Searching for courage and hope : I am sitting... - My Ovacome
Searching for courage and hope
Hi Molly..you poor thing! I completely understand that 'don't want to tell the family ' thing. But you need some support. Maybe ring the Ovacome nurses or Macmillan...just to get some specific help for you. Wish I could give you a ((((hug))))). You will get through this latest twist of the roller coaster but it sure ain't easy when it's happening xxxxx Lyndall
Thanks Lyndy
Your reply made me feel not so alone. I was waiting with dread for this day to come and now it's here I am finally confronted with reality. Up to now I was almost persuading myself that it was a huge mistake since I was nearly in my fifth year NED. One good thing about having nobody around for miles is that I will maybe cry all my tears out today and put my best foot forward from then.
XXX
Oh Molly I wish I was there with you now. I know exactly how you are feeling, having had two recurrences but I have had two, still here 8.5 years later, still fighting. Ring Ovacome, MacMillan, anyone. You need to talk this through with someone you shouldn't be alone. Sending you a big virtual hug and have just said a pray. Please keep us updated as to what the Dr says.We are all here for you. Kathy xxx
Hi Kathy
I am waiting for my GP to ring as he was with a patient. I am more upset as its Fri afternoon and just got a phone message with this news. When I rang back I was greeted by a message that said my consultant was now away and would not be back until Tuesday . It would have been nice if he had made sure to talk to me . As I am in Ireland I will try to get Ovacare as soon as I get to talk to my GP. I had been waiting for a letter from the consultant as it is 2 weeks today since I had my CT scan . When post came with no letter I thought if it was bad news they would have been in touch before this. Thank you so much Kathy for getting back to me. It means so much
XXX
Thinking of you. I'm so sorry you are alone. I've had all my bad news alone and no one should have to do that. Sending hugs and lots of us are thinking of you so never truly alone x
Thank you so much. My brother is always here but he had an appt 3hours away . He just phoned to say he arrived safely but I did not tell him as he is meeting friends too and it would only upset him. Another brother is coming this evening and I am cooking dinner. He is pretty useless about illness or doctors so not sure how much to tell him. My GP rang me but he just tried to reassure me as he hasn't got any letter from the consultant yet. Will now try to get out of my PJs and go for a little walk to clear my head. Not sure if chicken curry will be the best menu for me but I will try.
Thanks again . All the kind answers including yours will keep me going.
XXX
Dear Molly
I'm sending love and a hug. I'm sitting on my sofa wishing you were here as I'm sure many of us do reading your blog. At least we have this forum to send comforting messages so you know you're not alone.
I hope you've managed to chat to someone. I'm sure your family would be relieved if you confided in them. You don't always have to be the strong one and it can be their turn now to support you.
I'm horrified you received this news via a telephone message. That is definitely not acceptable. Whoever left that message had no way of knowing who would pick up the message and it could have been someone you didn't want to confide in at that moment. You shouldn't have been upset like this.
I can't imagine how hard it is to have a recurrence after so long. I've had three and if there's any comfort I can give you it would be that a recurrence doesn't mean everything has gone pear-shaped. If there is progression there will be a plan for you, and having had such a long time between incidences really does augur very well for your future. There are many treatments we can try. New ones are coming online all the time and a cure for cancer is round the corner. I hope this thought gives you some comfort.
Please please don't remain alone with your thoughts.
Sending love xxx Annie
Hi Annie
Thank you so much for your lovely reply. It was just that the phone call could not have come at a worse time. My lovely big brother is always here and in fact he wanted me to travel with him this morning. I really wasn't feeling well enough and besides I was waiting for the post for CT results . He rang a short time ago and I didn't tell him as he is too far away to return tonight. I have just had a long chat with Ruth in Ovacome which was really helpful. In fact as a result of speaking to her I am now going to leave a message on consultants phone about leaving me a message like that just before the weekend with no hope of follow up. Thanks again for your reassurance. I am now going to make myself start the dinner and do some housework
XXX
I'm really glad you're going to have a word with that consultant. Some years ago my life seemed to grind to a halt as I couldn't find a solution to a problem I had with my cancer treatment. I remember saying I felt as though the ground had opened up under my feet and I was plummeting and plummeting into a black hole. Somewhere on that downward trajectory I discovered anger. Anger at the injustice of it all, and anger that nobody of influence was doing anything about it.
A bit of anger is not a bad thing. A bit of housework isn't a bad thing, then definitely have a word, or email that consultant of yours!!!!
Sending love xx Annie
Thank you Annie
Believe me I do get angry and it's not a pretty sight as I am normally placid. When I erupt Mount Vesuvius is in the halfpenny place. The thing about this consultant is that he is always the soul of kindness and gentleness so I think he may have been called away. Anyway with those lovely vibes coming from all of you I will make the most of the weekend and try to park that big elephant in my room until Monday. Have a lovely weekend . Will keep you posted
XXX
Dear Molly, adding my thoughts and wishes to all that surround you. I know in the past I have sometimes held things back from those nearest to me but have also been reminded by them that in difficult times, I would want to be there for them so should perhaps allow them the same opportunity to be there for me.... I also think that at some times we all need someone to put their arm around us with love... It won't change the news but so important to have that touch.... Am sending you the gentlest of 'virtual' hugs in the meantime and certainly wish you hope and strength xxxx
Thank you so much. I do need that hug. My lovely big bro will be back tomorrow and I am sure my friends will be on the phone. Meanwhile another brother with his head in the clouds will come this evening as I promised to cook dinner . I will try to make myself feel normal .
Will keep in touch. Take care.
XXX
Oh Molly, I really feel for you and wish I could give you a massive hug. x
Hi there
Was replying to your kind reply when it disappeared. I just want to say a huge thank you . Your kindness will not be forgotten
XXX
That must have been awful when I got the results of my first scan in 2012 I had a similar situation and was in such a spin I still remember it. Try and put it to the back of your mind until you know for sure, it could be an infection or anything and they are right to be cautious. I think they have special training to stress us on a Friday because nobody is ever around at the weekend.
Have a nice glass of wine and enjoy your company this evening, have everything crossed that it's nothing to worry about
LA xx
Oh thank you Lily-Anne. I am still reeling. A lovely friend rang 5 minutes ago but I could not tell her as she is meeting her son who flew in for his brothers stag . A wedding I have been invited to in May which will be followed by another one 2 weeks later. I hope the disease or treatment won't stop me ! My cat is even crying here . I think he knows! I will try that glass of wine and I never did take that walk in the sun. Thanks again
XXX
I had a glass of wine for you too lol can't make things any worse (I hope). Have a good weekend stress isn't good for the soul
LA xx
Hi Molly O, what can I add to what has been said already? I am so sorry you got this news and especially on a Friday and the consultant is gone on his merry way. The lymph nodes could be enlarged for many reasons besides cancer. I think what was done to you today was stupid to say the least. Sometimes they can rescan in a few months and find they are gone down again. This has happened me, my tummy ones are forever changing size. If you are running to the loo maybe you have an uti, perhaps Monday go along with a urine sample to your gp. So what else did this silly man say to you, are you to contact his office or is there an appointment in the offing. I agree that you should tell him the way you felt after getting the voice mail. I am sorry your friends are not around at the moment. As for brothers, well when I was on my last treatment, one of mine decided I was doing a three or four miles trek with him, Enjoy your meal tonight and when your dependable brother comes back,have a chat with him. I know you were dreading a recurrence but wait and see until you see this onc or the gynae liason nurse. Try and distract yourself tomorrow by doing something nice for you. Lock up that message in a box and throw away the key until Tues. I am thinking of you and sending you a hug.
Hi Suzuki
I am reading your very reassuring reply as I have read all the others. You are right in saying the worst thing was leave a message and leave me hanging for the weekend. This consultant is always very gentle and nice. I did listen back to his message just now and he did start off by apologising for leaving a message. For all I know maybe he was in theatre after that. He said there were signs of lymph nodes enlarging which could indicate early stages of recurrence and that had passed it on to the oncologist to study and decide if I needed to start chemo. No appointment made so I will be on the phone first thing Mon morning. In the meantime I will try to stay calm and take all those wonderful positive messages on board . By the way I did ring back and left a very strong message to explain how stressed I felt getting such a message with no hope of follow up until Tue !
XXX
Good on you for doing that and reading through what you have said now is more reassuring to me to be honest, However, it was a rash decision on his part to leave a message. Men!!!!!!!!!!!!!
Molly!
I am sending you a virtual hug! What that consultants office did to you leaving a message like that is beyond cruel and in actual fact inexcusable!!!! I am wishing and hoping with everything that I have that your swollen lymph nodes are just that and not an indication of anything else but no matter what be assured that all of us here are here and will remain here if you ever need to just touch Base! Try and enjoy your weekend with your family and I hope the weather is good there it's great in the West at the min!!!
Onwards and Upwards lovely lady!!!!
Dxx
Hi D
Thank you so much for your lovely kind post. You and all the other women have made me feel that I am the centre of one giant hug. It has also lifted my spirits and made me feel I have the right to be angry at such offhand treatment. Unfortunately I have to wait the whole weekend to speak my mind and ask questions. I am normally a very mild quiet person but they have not heard me roar like a lion yet ! To be continued . Thanks again for for your supportive words
XXX
Hi Molly I so sorry that you received this news by voicemail, sending you lots of love prayers and a big hug, I hope you can contact someone to talk it through so they can give you a very big hug and lots of support. Take care and thinking of you xxxxx
Thank you KM
Replies like yours have given me huge comfort and will keep me going until I can talk to these so called professionals. Thanks again.
XXX
Hi MollyO, what can I say that the other ladies haven't said except send you another virtual hug and say I am thinking of you. Kittie
Thanks Kittie
Your reply lfts me up and that is all I need until. I find out more. The kindness gives me hope and comfort.
XXX
Hi Molly I'm so sorry . Wish we all were together and hug each other . I'm very scared too .My CTS is on Monday and I can't stop thinking about it .. But at the end of the day we know what we have its not easy and may come back . Just think that no matter what u will Go through it , At the end will be worth it.. I'm sending you a lots of hugs xo Suela
HI Suela, the times for scans and results are the most stressful of all arent they? Now you have the scan Monday so for Sat and Sunday try and do something to distract yourself. I find that helps take the focus off the scan, We cant help feeling scared,mine is in May but by then I will be a mess. While drinking the stuff, I try to think of the lovely tea and toast I can get in the hospital canteen when I am done. Waiting for scan results then for two weeks so will have to find some way through the worry until the apt with the oncologist. Wishing you well for Monday
Thy Suzuki,
I keep telling myself Not to and I feel better now . I went over to visit my grandma and I broke down couldn't keep myself together . She just liftet me up and told me not to worry, she goes I want you to tell yourself I'm fine I have nothing to worry and you will be just fine .. I don't know but after I left I felt so much better . I believe in self confidence if u think positive always is good and that's what I'm going to do . Xo Suela
Look you got upset because it was time to get upset and you probably feel a whole lot better now. Nothing like a good cry and then a hug to make you feel better. Yes positivity is a very good tool to have. We may not have it every minute of the day but we have it within ourselves. Take care and best of luck with the scan
Thank you Suela . Looks like we are both having the same stress filled lives.. I wish you so much success in your CT scan . I hope and pray thar all is clear for you. Please keep in touch.
XXX
Dear Suela
So sorry for the late reply. Your words are so comforting and I am so touched with your reply knowing you await your own CT and results. I will be thinking of you and praying for you. Please let me know how you get on.
XXX
Thank you Mollyo . Xo
D . You are so good to reply. I am now trying not to feel stressed despite the very bad timing of my very nice consultant. My alternative brother has now arrived and the chicken curry has yet to be served. The lovely wine has helped me to put today aside. However I am still very disturbed by the insensitivity of it all . My mission in life now has to be the bedside manner of any consultants dealing with patients who have cancer. They just have to be taught the rights and wrongs of dealing with cancer patients. I think we could all teach them a lesson or two . Thanks again for your lovely reply
XXX
Molly, I am so disappointed that someone can be so insensitive to leave you a message like this and then be unavailable all weekend until Tuesday. I am sorry to say that I think no apology can make up for it. He could have phoned your GP, explained exactly to him what the news might or not mean and asked him to to tell you. Or a colleague.
Stay strong, sorry about the walk in the sunshine but hope the glass of wine did the trick. Five years NED is a long time and if things have reoccurred there's no reason to suppose further treatment will not give you equally as long. As many ladies have sId here they've had multiple reoccurrences and are still with us.
Take care and I guess your going to have to tell your brother something as he'll probably guess something is up. He may surprise you yet. And at least having to cook a chicken curry for him will help you concentrate on something else.
All the best
Helen
Hi Helen
As I type this brother is filling the dishwasher . Curry turned out quite nice despite my attempts at ruining it. I did tell him but I played it down and I know he was upset . We are a family who are close and stick together through thick and thin. I love them all dearly but I don't want to worry or stress them . I have already spoken to some of them this evening . You have given me so much reassurance by reminding me of how many women have multiple recurrences.
I will be as positive as you have made me feel,with your post
XXX
Hi MollyO. I hope you managed to get some sleep last night. Please try your best to distract yourself from your worries and fears until the oncologist and the team have had a look at this scan and cone back to you with a more appropriate response and a plan.
i had a head CT this time last year after I had stroke symptoms and the a&e consultant told me the cancer had metatastised to my brain - - devastating news to me and my family as I thought I was done for - but when the oncologist got involved - he ordered an MRI - - turned out it was a brain abcess - still very serious and required 2 brain surgeries and 4 months of antibiotics but it wasn't cancer and I stayed in remission of my ovarian cancer the whole time - in fact my ca125 was never so low!!
There's always hope and I hope and pray that the outcome of this will be a positive one for you. You are in all our thoughts as we are all waiting for the "other shoe to drop" and it could be anyone of us who received that unfortunate message. X
Dear Missfitz
I sent you a long reply but it went in the wrong place. Please let me know if you read it as I just wanted you to thank you for your kind reply and to tell you how much more courageous you are compared to me . Up to now I have got away lightly compared to you and lots of other women . In the meantime I will try to keep myself busy at the weekend. Take care
XXX
Oh Molly, I have only just seen this message as I was in chemo yesterday but it made me so sad but also really happy that everyone on here, as always, offered their support. I hope you are feeling a bit brighter today and ready to face whatever the new week brings. I think the problem with the telephone message is it's one sided and you had no chance to ask questions and therefore reacted as all of us would by thinking the worst. If all the scan shows is a slight enlargement of the lymph nodes that doesn't mean recurrence is confirmed and may be explained by other issues. However even if it IS early stages of recurrence, you have gone a long time afyer initial diagnosis to very minimal desease and that is extremely promising. My oncologist told me he had a patient in a similar situation but that she was still doing well a year on without treatment as the growth was slow and minimal. Whatever the situation is, once you have a plan you will feel miles better and still be very optimistic about the future. Ovarian cancer is more and more being treated long term with periods of treatment, periods of recovery and periods of feeling totally normal!!
Sending massive hugs to get you through the next few days. Keep your chin up. There's always a plan. 😀👍.
Keep us all updated.
Much love Mummy Bear. Xxx
You are so kind Mummy Bear. You are so right in saying a phone message was so one sided. I always have my phone only inches away from me but this time I was in the bathroom . I saw the missed call and had played back the message and tried ringing the consultant all within 6 minutes. He must have left his surgery immediately after making that call . He did apologise for leaving the message which makes me think he was called away or was due in surgery. In any case he should have waited until Monday and I would have been blissfully ignorant for a few more days.
Your reply gives me great comfort and hope . Along with all those other caring replies it will keep me going for this long long weekend. God bless everyone
XXX
Thanks Missfitz
I did manage to get a few hours sleep last night but when I woke fully this morning the nightmare was still real. I suppose all along part of me wanted to believe it was all a huge mistake and that this was the reason it wasn't recurring . Silly I know but it stopped me from worrying day and night. If there was a medal for worrying I would be up on the podium getting the gold one ! Reading your reply you have gone through so much I am in awe of your courage and of all those other lovely women who have fought a much tougher battle than I have ever done.
I will keep you all posted. It's going to be a long weekend. I hate telling friends and family and worrying them if it turns out that I will be put on the dreaded watch and wait. Thanks agsin for your caring reply
XXX
I too have just picked up your post but know that it is now Saturday and you will still be very anxious. So, this is just a big hug from me and a reminder that you have dealt with it before with great success and you will deal with it again because, even though we have our wobbles and face some really tough times, we are a very strong bunch of women. As for the Friday phone call, I think it calls for a letter of complaint to the hospital with a strong suggestions as to how you think this should have been handled. We will all be waiting to hear how you get on on Tuesday and in the meantime we are all here for you. xx
Thanks Valerie
I have already left a message on consultants phone saying how upset I am so I presume that will be acted on. Today I am just coming to terms with the recurrence word and having read lots of the replies maybe I should wait until the oncologist reviews the scan before I start thinking of worst case scenario. The timing of the call has caused needless anxiety. In the meantime I will occupy my time by doing the chores I neglected yesterday.
I may even take that walk today . My lovely big bro is returning today and telling him wil be the hardest thing as he has seen me through the worst of times . I will be trying to find some answers on Mon. Thank you do much for your caring reply
XXX
Hi Molly, I'm so sorry you heard this news in this way. Its actually very bad practice apart from anything else. You have stated you don't want to tell your family yet but what if one of them had cone in and listened to the message. Before I left work there was an issue within the trust I worked where someone left a message for the patient and her son got to it first. There was an uproar about it, confidentiality issues etc.
One thing to focus on though, my recurrence came back in 3 lymph nodes, discovered first by raised CA125 followed by CT scan. However they were considered small and I was able to go on watch and wait. That was in Aug/Sep 2014 and I remained on this until end of February 2016. Don't give up hope. I know you've had a shock but you need to speak to your oncologist as opposed to your GP.
Take care. Ann xo
Thank you Ann
Your message really gives me hope. That and the fact that the message did say there was no spread to the liver or other organs. I was concerned that this could have happened as I have not been feeling great for long time and this is why I made the appointment a few weeks ago which resulted in scan. Otherwise my next scheduled appointment was not until mid May.
The call was very bad timing and a friend remarked that he should have waited until Mon when I could have spoken to them and made an appointment to see someone. But I cannot undo that so will just have to go forward and put my trust in the man above. You are so good to give me your time and advice. Will keep you posted
XXX
No Molly O you cant undo yesterday and the phone call so put it away until Monday or Tuesday and can get definite information and an apt for a consultation. It would have been wiser for the gentleman to hang up rather than leave a message. Then you might have been wondering about a missed call so there is no winning in this. I am glad you didnt keep this to yourself and have confided in your family and friends now. But sometimes when you need people, there is no one around and it is a lonely place. Try and enjoy the rest of today and tomorrow. You are a strong lady and there is no reason that if you need treatment you wont get a long remission when finished. There are plenty of treatments out there. Sending you the kindest wishes
Thank you so much Suzuki. I have realised as you say that the poor man had very little option when he did ring. The wonders of modern science means for me recognising the number with no message attached would have been more worrying. Your advice and reassurance mean a lot. Enjoy your own weekend.
XXX
Dear MollyO. I have only just read this thread so cannot add anything that others have not already said. But I did have an upsetting phonecall one Friday afternoon by an insensitive nurse, that left me in floods of tears over the weekend, so I understand the stress it brings. Just know that I am sending you an e-hug, and thinking of you and sending love and prayers. There are a lot of us out there supporting you and caring. CarolynA x
Thanks Carolyn
You and all the women are so kind to take the time out of their own worries to reassure me. Believe me without this forum yesterday would have been unbearable. I stopped crying and cooked that curry and had a few glasses of wine. I spoke to some of my family and friends . I listened back to the message and it did say there was no spread to other organs but lymph nodes were beginning to swell. Some of the other women have reassured me on that one so I will just have to wait until oncologist reviews it which will be soon I hope. The worst thing about all this is that an actual conversation might well have stopped all this worry and anxiety from happening. But as the politicians love to say " it is what it is " . Please keep me in your prayers.
I think that issue I have lasted so long. Bless you for your kindness
XXX
Hi MollyO. Just logged in and read your post. Hope you feel a little better today. Lets strip out the negatives and focus on the positives - ' no spread to other organs..' Keep your head on that one.
Unfortunately tactless and silly acts occur all the time, human nature being what it is. I'll never forget a CNS getting all teary and fanning her face when I was given the news I had cancer cells in my pleural fluid. I didn't know whether to laugh or cry.
Chin up my friend
Debs xxxx
Thanks Debs
I feel mentally better today and a lot of it due to the most encouraging replies from everyone including your good self. I did as you say and am now focussing on the positives . Of all the people on my team he would be the one least likely to hurt anyone. In fact every woman I know loves him. I feel there is a reasonable explanation somehow. I am not looking forward to meeting the other person though as its a different personality entirely. I am now waiting for my big bro to arrive any minute and I am deciding how to tell him as he is very caring and has been my rock through the worst of times. Plus Ireland is playing Scotland and I don't want to take the joy out of a possible win ! So happy to read your words of wisdom
XXX
Dear MollyO,what a devastating way to tell you in the first place.Its a scary ,black time for you but take strength that there are many people on here who too have lymph node envolvment,me included.It might be something benign which cause the enlargement.Its pointless telling you not to worry because that's something we do when we hear news like that. The important thing now is to keep talking ,to family,friends and even to help line centre.You have my prayers,hugs and best wishes.xxxx
Hi Annie
I do feel much better about it today thanks to all of you and my friends and family. I honestly do think now that it was just one of those things and nobody's fault. You could not meet a nicer person than this consultant. I don't know what pressure he was under on Fri . I do hope that the answers come fairly soon. In the meantime I will try and chill and think nice positive thoughts . I cannot rewind and replay Fri so will banish all imaginings out of my mind and learn how to use my nutri blender. Thanks again my lovely friend and say a little prayer for me.
XXX
Hi to all those lovely ladies who so kindly came to my aid on Fri and over the weekend. My consultant did ring me a short while ago and the news is I will be back on the bandwagon of chemo more than likely. Trust me to have swelling of the lymph nodes that I never heard of before . My peri aortic nodes which are not in a good place as you can gather from the name. It does explain left and right side back pain plus deep inside my back in the middle. Oncologist is away of course and should be back to me next week. Of course once again Murphy s law means I would pick Easter week for my drama . Please in the meantime if any of you have any experience of this condition let me know . I would really appreciate any positive vibes. Say an Easter prayer for me.
XXX
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