Another newbie

Hello Ladies, I joined the forum a couple of months ago and am now feeling brave enough to post - you seem a friendly lot so here does. During 2016 I joked about getting my money's worth from the NHS, going backwards and forwards. Unexplained weight loss, dizzy spells and eye infections. My weight loss was put down to my dormant colitis, MRI on head was negative and I was weighed but no one seemed to take any notice of it ongoing. Finally suite of tests ordered in January resulted in urgent call to visit GP 'it's ovarian cancer, very bad, so sorry ...'. Bottom fell out of our world, as we were left alone for a week. More tests, and the a suggestion that it may be PMP or Pseudomyxoma piritonei. My results were sent from Somerset to The Chritie for a second opinion. Having gone to Manchester for the expert opinion, we had the first glimmer of optimism . The plan was debulking, rest, 2nd op for removal of just about anything left, and hot chemo. 'Aiming for cure' and ' I can remove anything ' were just what we wanted to hear.

First thing I remember was being in CCU with the same consultant and my partner. 'I'm really sorry, it's very bad' were not what I was expecting. PMP is known to produce a very thick jelly, rather than the thinner ascites, and apparently it was a complete surprise that my ovaries were as large as grapefruit, appendix unusually large and deformed and omentum 'filled' with tumours, with the thick jelly preventing these being seen. My situation is apparently 'precarious '

I can't say it's been a roller coaster ride, as that would imply ups and downs. I'm now at home recovering from surgery, having had ovaries and appendix removed. Still awaiting all lab reports from biopsies taken during op, but the previously confident consultant no longer mentions further surgery.

This has all happened so quickly, but despite being told to stay positive, it's hard to find anything to be positive about. Also still learning the rules - on doctors rounds, I mentioned dying and next thing I know is there is a psychiatrist at my side! Think I'm supposed to wait to be told the expert opinion first, as after all, I still don't even have a diagnosis.

At 58, I'm not going without a fight, and had been glad to be referred to the Christie, but if one of the best in the country can't fix me, not optimistic. It's annoying that post op I've been told enough to worry us, but still no facts or plan ahead. We are trying to focus on day to day, to build myself up for whatever comes next. Having lost 2 stones during the last year, my birthday suit is about 3 sizes too big! My diet includes cream cakes, large chocolate bars and tons of ice cream. The waiting is horrible, but I'm only human and don't want to hear news if it's bad. Sorry this has been a long first post - just trying to put one foot in front of the other and appreciate every day, while getting our heads around all this. Thank you taking time to read this, and any replies would be appreciated

Sharon

51 Replies

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  • What a tough ride you are having. I have to say despite the lack of a plan you are definitely not written off but at the start of a bumpy road and their job is to smooth it out. Try not to worry. Jealous of the chocolate lol

    Welcome to our party

    LA xx

  • Dear Sharon............poor poor you, what a terrible time you are having. Please please hold on to all positive thoughts, there are many survivors on here who are stage 4, my husband was diagnosed stage 4 ,8 years ago with bowel cancer, now in his 6th year of remission, Never give up. Sending you lots of love and hope. xx

  • Hi Sharon,

    Glad you finally decided to post you will always find help and encouragement from all our lovely ladies, We all say try not to worry, it won't help but it is easier said then done I've been on my battle with this beast for 3 years, I was diagnosed with serious stage 3 ovarian cancer,my daughters were told I would not see the year out, no one can tell you how long you will live, you are a unique person and new treatment is being develop all the time, I'm not down sizing the seriousness, but treatment is out there .

    Once you have clear picture of the treatment your oncologist has for you then you can fight the good fight. keep posting it does help we all understand what you are going through.

    best wishes from down under Lorraine xx

  • Welcome Sharon. What a tough introduction to this world you have had, There are so many varieties of this disease, it makes it even harder for everyone to keep on top of, but I'd be surprised if you don't hear from someone with your particular features.

    A tip given to me by a surgeon about helping healing and weight gain (and which worked ) was to eat protein.... so maybe add some cheese and eggs and nuts etcc into your weight gaining diet......

    All best wishes, and try not to worry too much about what happens next..easier said than done I know, but it's today that counts. xxx

  • What a tough physical and emotional time you are having Sharon, we all know how that feels. You are not alone, lots of ladies on the site offer support, words and encouraging stories to lift your spirits. I just try and enjoy each day - cream cakes sounds a pretty good way to cheer yourself. I'm sure your medical team will come up with a plan for you, I think they do like to give you a little while just to recover from the major surgery.

    With very best wishes Dawn

  • Oh Sharon, what a roller coaster ride for you. But never give up hope, doctors are wrong often and there are so many ladies who have been given bad diagnosis and they are still inspiring us 10, 15, 30 years on. Make sure you get an oncologist who will fight with you and try not to read Rio much on the dreaded dr google! Hang in there and hope you get answers and a plan very soon.

    X

  • Hi Sharon. So sorry you have had to join our group but you are right we are a friendly group and we will be here with you every step of your journey. I was diagnosed stage 3 in 2007. The prognosis is not good said my surgeon, you have probably a couple of years said my then Consultant (soon binned him off) and that was echoed by a macmillan nurse, another said it will come back and it will shorten your life. Well here I am in my 10th year, two recurrences later, still working full time currently no evidence of disease and currently on my third trial drug. One major bit of advice is stay off Google. Google cant tell you what will hapoen to you, you arent a statistic, you are you, unique. I had the same experience re having mentioned death once and the next thing I knew I had a visit from a Consultant psychiatrist! Do you know when your results are due? I have to say if you are under Christies you are definitely in good hands, they really will do everything they can to get you through this. I hope your recovery from surgery goes well, do keep us updated. Sending you a big gentle hug, Kathy xx

  • Hi Katmal thank you for taking time to reply. I understand that results are 1-2 weeks plus time to be read/ interpreted by consultant. They weren't available before I left hospital so it's a face to face appointment in Manchester 6 weeks after op. I was encouraged by your words and Google warnings, although tempting at around 4 am.

  • Google doent make good reading at any time of the day, let alone 4 am when everyone else is asleep and your mind is running riot. If the weather is nice where you are today savour it, its all about the here and now, try not to worry about the future (soooo much easier said than done I know) worrying wont change it, I know cos Ive been there done that. Now I savour the fact that I wake each day. Big hug, Kathy xx

  • Thank you Kathy, I have just come back from a short walk through the village in the spring sunshine. I am fortunate to live in a lovely Somerset village, and your words are so true . Thank you

  • Sharon, almost 7 years to the day (30 March 2010) I had "open and close" surgery for inoperable stage 3c, with extensive bowel dotting of cancer. I know it's not the same for everyone, but I am still here with my life and my bowel intact. Yes, more surgery and chemo. I lost so much weight that I was afraid. I am now straining my waistbands and rueing the days of daily ice-cream. Hang in there lady, you are in good hands.

  • Thank you Ruby, I appreciate you sharing your hopeful words. x

  • Hi Sharon, no wonder you feel all at sea, but I can assure you that you will get loads of support and advice from the ladies on this site. It has been a lifeline for me and we are glad you found us, though sorry you needed to.

    Waiting to hear what the plan is must be so stressful, but once that plan is in place will give you some clarity on your condition, and give you an aim in managing the condition. Meanwhile, concentrate on re gaining your strength and putting on those pounds!

    Jenny

  • Hi Sharon, firstly welcome to our family of friends and as you say we are a friendly lot and there is always somebody here who will listen and have some useful information or just offer support.

    What a rough time you are having presently, there is comfort in the fact you have been referred to Christies, they are the top rated cancer specialist hospital in the country, many of us have been treated there are still attend for checkups there, me being one of them.

    I am so sorry and understand your disappointment at being told the news wasn't good but they now know what they are dealing with, I believe the 'hot' chemo is delivered straight into your tummy to directly target the little ba%#*^ds that are still in there? Has there been a plan made to administer the chemo yet?

    Try to get strong ready for the next hurdle, I can totally empathise with the weight loss, I too lost 2 stone and looked grim, I know just what you mean about the birthday suit bit, my boobs vanished as did my bum, but I got it all back (and then some 😟) Try to eat loads of protein and carbs as well as the yummy stuff you're having they really did it for me, you need the protein for nourishment and strength and energy and carbs for weight gain and energy too.

    I'm sure nobody has written you off yet, you need to recover from what was major major surgery before they take the next step. I would suggest contacting your oncology team to ask for a plan of action moving forward.

    Take lots of care, keep posting here as somebody will have some info that's really positive to give and hopefully help. Do try to have a little positivity, I know it's hard but it does help, I was told this by my oncologist. Sending you big healing hugs and lots of love ❤️ xx Jane

  • Oh Jane Thank you. This rotten disease has already changed the way I look, and covering the mirrors doesn't help! My man is sooo supportive, and has become my feeder! Looking forward to my fry up for Saturday lunch!

  • Hi Sharon. The lovely ladies have said it all. I've been reading posts on this site for over a year and never heard a bad word about Christies so I know you'll get the best treatment. My surgeon shook his head and said depressingly and repeated it twice.....you have a lot, a lot of disease. Well over a year later I'm stable with successful surgery. In fact that idiot didn't do the surgery as too complex for him. Keep positive and you will be amazed at what can be done. Take care xx

  • Hi Sharon, what a story and journey you've had so far. Thank you for sharing with us.

    On here we tend to have post from ladies that are wanting advise and are going through a bad time. But there are many people also that have kicked this disease out, and are living on many years after diagnosis.

    From what I was told is its treatable, so I'm hanging on to that.

    I think it's great that your under a fantastic hospital so I'm know they will give you the best treatment availbe.

    Good luck and if you can be positive believe me it does help.

    Ann xx

  • Hi Sharon - you've had some great responses so far and I just wanted to add mine. Your experience of (lack of) diagnosis and the whole speed of the rollercoaster ride is an all too familiar story, however we are all where we are. The way I now look at things is to appreciate what I've got right NOW and not to look too far ahead. You're at a great hospital for treatment, and you've learnt a lot about your condition so you should feel a little more able to ask "the right questions" (and whoever shied away from the D word is I'm afraid typical of some of today's NHS). I sometimes force myself to remember that the consultants are only human too, and probably dislike having to pass on bad news.

    Of course your confidence has been shaken more than a couple of times, but you're still here, you've got a plan, and you're in good company here on Ovacome! We certainly do understand, and my experience of the support I've got in times of stress and emotion has been so good. You'll find a safe place to rant, share and even laugh with us here.

    I'm delighted to hear that you've got some "fight" left. Of course you have - enjoy your weekend and hope the sun's shining with you too!

    Caroline x

  • sorry Sharon - I've re-read your post and realised that you're still waiting for your treatment plan. I completely sympathise - the waiting is the most difficult part. When I was first diagnosed, I had gallows humour and not only wanted my money's worth from the NHS but was a bit cross that I wouldn't get to cash in my pensions! x

  • Hi Minard, Thank you for the response. I must admit to a bit of gallows humour myself - I find that I have responded better to my (grown up) niece's 'black humour' . It just seems more like an acknowledgment of the situation, rather than a pretence. x

  • Sharon, You have had a rough few months. I can only echo Mac-27 whether she says add some protein to your diet, cheese and nuts, etc. They will help the weight gain and nourish you.

    Hopefully you will have a full diagnosis soon together with a plan, doubtless chemotherapy.

    If you do google, one thing I learnt was to look at the date of the report / info. If it's 2002 say, it will be reporting on data that was already five years old then, so is actually now twenty years out of date. Things move on quickly in the medical world. There are lots of ladies here who have been members of our club for many years.

    Your sense of humour will help you. I really smiled when you said the psychiatrist popped up next to your bed!

    All the best and now you made your first post, stay in touch.

  • Thank you for the sage advice. From what the psychiatrist said, I may have cancer but at least I'm not crazy! x

  • Sorry you've had to go through all this, and yes waiting for results and a treatment plan is just awful. I hope you get some answers soon x

  • Glad you have decided to post and it is bound to be very difficult to remain positive. However, I went to Christies last year for big debulking op and heated chemo and results so far have been good. It is an amazing place of excellence. I originally had a diagnosis of bowel cancer, which spread to peritoneum and given 2/3 years possibly. Found out I had ovarian cancer last July, after my op at Christies but now have had a clear scan and good blood level readings. What I am trying to convey is that however bad things can look it doesnt always turn out that way. So many postings on this site will confirm that a bad diagnosis etc doesnt mean 'thats it'. There are some amazing stories from a lot of the 'warriors' on here and very uplifting so take heart and try to be positive, not always easy as we all know. If you feel down just come on site and post and there will be someone who will try to push you back up! Lots of love xxxx

  • Thank you for your encouragement X

  • Hi Sharon

    Not sure I can add anything to what's already been said...sending big hugs to you and many good wishes as you wait to find out what's next 💪💪💪💪💪❤❤❤❤❤

  • Hi Sharon, from what I have heard PMP which is more to do with the appendix , although extremely rare, is most definitely treated by cytoreduction (debulking) with HIPEC (hot chemo) followed by protocol chemo as need be . The results are said to be highly highly optimistic so you are in the right track. You should be glad that it did get diagnosed when it did. All the best and I'm sure that you will be fit as a fiddle soon. Keep the Faith .

    NaimIsh

  • thank you for your encouragement, I'm still hoping that the further surgery and HIPEC may be possible. I understand that PMP is very rare and at around 2 in million, I prefer to think of myself as 'Special' ! x

  • You are a special lady and in really good company ❤xx Jane

  • Hi Sharon

    You have had some great replies so far and I just want to add my little bit. I have Primary Peritoneal Cancer and I met a group at a patient day . Three women and one man all had surgery followed by the hot chemo and we're doing well. The man had your condition as it came from the appendix. There is a website called pseudomyxoma Buddies where I'm sure you can chat to people with the same condition. Please stay on ours too and let us know how you are getting on . You are lucky to be in a top hospital for your condition. Good luck with your future treatment. Your great sense of humour will be a huge help. Keep smiling.

    XXX

  • Molly thank you for taking time to reply. I have been amazed and touched by the numbers of replies and the caring support I have revived on this site. I now don't feel so alone. Thank you

  • So glad you have posted on here. I am 57 and had my op in December. I had lost a lot of weight before the op and continued to lose it afterwards. I was a skeleton with my skin hanging off in wrinkles and was really scared. However the surgeon told me this was normal and it has slowly improved. It all happens so quickly and it is hard to take it all in. Please do keep us posted.

  • Neona thank you for sharing some of your story. It isn't easy but we know that we are not alone. X

  • Hi Sharon, just wanted to join the other ladies in welcoming you to the site and thanking you for your post. It is great that you are under Christies and I am sure you will get excellent treatment there. Waiting to know what happens next is always tough but concentrate on building yourself up meanwhile so that you are as fit as possible when the treatment does start. Be very gentle with yourself and have lots of treats and enjoy the lovely spring weather.

    All the best,

    Barbara x

  • Hi Sharon

    So sorry that you have had this devastating news but welcome to our special club .

    Just wanted to send you a big hug and reassure you that you are being treated at a great hospital with an excellent reputation . I was diagnosed stage 4 high grade serous OC in June 2016 and told inoperable . Was feeling well at the time on holiday in Mauritius so it was a total shock .

    Had to wait what seemed ages for treatment plan which is really hard . Responded well to chemo had major radicle surgery in Nov followed by more chemo and am now NED with a clear scan and on maintanance Avastin back to enjoying life . So although things may seem uncertain at present remember there is always hope. Wishing you a good recovery from your surgery and concentrate on building up your strength for battle . We are a good team here.

    Best wishes sending lots of positive vibes . Love Kim x

  • Kim Thank you for your reply and sharing. I have realised through people's stories that cancer is not an exact science. So much seems to depend on our personal genetic makeup and doctors use their skills and experience but the human body is so amazing. Thank you for your good wishes x

  • Hello Sharon, welcome to our forum. You've had some great replies already and I echo what has been said about Christie's. It is a fabulous cancer hospital with a great reputation so p!ease take comfort in that.

    Once you know your treatment plan you will feel better. I echo what has been said about Google, not a good idea and always seems to give worse case scenarios. My mantra was 'one day at a time' and 'I am not a statistic'. I am coming up 4 years in June since my surgery and diagnosis and I hope and pray I will be around for a long time to come. It is a lot to get your head around in the beginning, I was diagnosed as Stage 3b high grade serous and I could hardly see past the end of my nose in the beginning, now, I make plans - I'm off to Euro Disney in April with my family and all being well I'm going to New York in August. I firmly believe life is for living and I intend to do just that. Wishing you all the best. Ann xx

  • Ann thank you for your reply. Hope you have a great time on your trips please let us know! X

  • Gosh sharon...firstly welcome & secondly I'm so sorry to hear what you have been going through. That must be very scary although it sounds like you're already putting up an admirable fight! I hope you get a clear treatment plan soon because that will give you something to focus on. In the meantime I'm sending you a jolly big virtual ((hug)) & hoping you're enjoying some of the sunshine this weekend (& plenty of ice cream!!) xx

  • Just wanted to add another welcome to the site - though sorry you've had to join us and for what you've been going through! It is all such a traumatic experience when you are first diagnosed and everything happens so quickly, then the wait for treatment plan and that is hard too. I hope you get your plan in place soon. I agree with Ann and the others it is important to take it one step at a time and do try not to google! Christies has an amazing reputation so keep faith in them. Keep doing little things you enjoy and get you out and seeing people/ getting exercise and enjoying the spring, anything that brings you joy. It's incredibly hard not to think about it all the time (been there, got the t-shirt!), it can become all-consuming but don't let it - you are still you and deserve to live your life. Good luck with your treatment.

    Love,

    Madeline xx

  • Madeleine thank you for taking time to reply. I have been touched and encouraged by the responses.

  • Adding another welcome and heartfelt best wishes!

    I found that there were some things I could have no control over and had to leave in the hands of the experts (you've certainly got some of the very best at The Christie), some things I might affect a little (it sounds like with your lovely man, you're doing lots to build up your strength. My focus was on remaining sane and you've confirmation you've got that covered!) and some things that I could do- the isolation can be overwhelming and destructive and in taking this step to post, you've found a wonderful group of people who understand a lot of what you're going through and will hopefully reassure you that you're not alone (even at 4 in the morning!)

    Do keep posting!!

    Wishing you hope and strength, Sxx

    (I was treated 4 1/2 years ago by the team at The Christie, my post-op assessment was really serious with challenging complications and surgeon was really surprised when histology etc came back with much better results than expected. I have been NED since)

  • S thank you for your kind and supporting words. Yes 4 in the morning can be a horrible time. I am amazed and touched by so many people taking time away from their own problems to reply and support me. It's human nature to focus on glass half empty at times like these, and your experience and of others on this site show that isn't always the case. Thank you. I am glad to have posted . Stay well X

  • I think we've probably all had that middle of the night experience... My very first post here four years ago ended "But at 2am in the morning and at many other times thoughout the day, it is the thoughts, observations and experiences of the amazing women on this site which have answered my fears, made me realise that we are not on our own and that whatever happens there is a way forward. So thank you, thank you all so very much." I still feel the same!

    Sxx

  • Hi Sharon......So sorry you've had to join our club that no one wants to join, but here we are. The ladies on this forum could not be more helpful and understanding. I know you'll be glad you joined. I was diagnosed at stage 4 in Sept. of 2014. I had the surgery and 18 weeks of chemo. I've been in remission for 2 years now, with no further treatment. Each case is different, and I think that only God knows what's in store for us, no matter what any of the doctors say. So, take one day at a time, and know there's a light at the end of the tunnel. You'll get through this as we all have. Prayers for you and your family......JudyV

  • Sorry this seems to be a bit long as well.

    When I was diagnosed 4 years ago this coming week, I found it was the waiting for news and tests and operations, worse than the actual news itself.

    I only joined this site yesterday having only heard of Ovacome this week. It will be interesting to hear other stories.

    My diagnoses was stage 3C. I am a very positive person but immediately made all my bank accounts joint and didn't buy new clothes because I didn't think I'd have a chance to wear them.

    Once I had my operation and started my 18 week chemo (I am on a trial) I seemed to settle myself. Family members need us to be strong. I thought even if the odds are 99% against I would be the 1% that would make it and even if the odds were 100% I would be the first to prove it wrong.

    I'm now as I've said, 4 years down the line and go to my regular checks. Whilst on chemo I used the cold cap and managed to save 90% of my hair on my head. The rest went but that was a bonus with no legs to shave.

    Accept help whenever it's offered and when you're laying awake in bed thinking of the worst (I did) try really hard to list the positive things. We could get run over walking out the front door. There are no guarantees.

    Keep your chin up and take the advice of your doctors. They know what they're talking about.

  • Hi Zena,

    Thank you for the reply. It sounds like you've been through a tough journey. It's good to know that 4 years on, you're still positive and moving forward. This is a very helpful, supportive site, and I'm glad you found it. X wishing you well

  • Thanks very much x

  • Thank you for taking the time to write all that down. It really sounds familiar. 6 months in and I realize that everybody is in the learning process. There is no test to prevent ovarian cancer, so here I am also in stage 4 while they are trying to find a chemo that doesn't tear up my entire gut. I've always been medication and chemical sensitive so I'm not surprised. The belly issues continue to be my biggest battle. The plumbing is non-effective. I don't want to eat because it creates too many problems. I never thought I would say I don't want to eat. I just got a heating pad for my birthday and I'm in love with it. So what I'm saying "Keep looking for and trying different things" and you will find something that works for you. You're the expert in your recovery. Try to find the self confidence you had before this diagnosis. many blessings Eileen

  • It's a bumpy road but keep going. All the best to you. X

  • Hi I was diagnosed in 2013 with ovca and have found that we are all different but my mantra is "live for today,forget about the past and none of us knows what tomorrow holds".

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