Uncertainty about ovarian cancer

[GillianWright]

Hi, I was supposed to be back at work today following a 'problem-free' hysterectomy in January. Fast forward to now and am about to go to GP for another sick note. A mucinous ovarian cancer was found in one of my ovaries and I haven't yet been formally staged or have a plan for treatment. I had to have a second lot of completion surgery to remove the omentum, appendix and check the bowel. I'm so scared. I feel like I am letting down my family, friends and colleagues. I know we all have to die sometime but I want to live for a while longer. No doubt many of you have children, I have 3, I want to live to see them grow up. But I am so scared of what will happen to me and what they might have to go through. My father died of non-Hodgkins lymphoma when I was 20. Growing up with that was rubbish and I was helpless to help him. So many of you sound so strong and you have been through a lot, I don't know how you do it. I don't know what to do or where to turn. Everything I'm reading about ovarian cancer seems so uncertain and so final. I need to be strong for my family but, on my own, am just weeping all the time.

[midcanada]

I hope you soon have a treatment plan in place and can move forward. You have had a long wait already.

Sally

[GillianWright in reply to midcanada]

Thank you, appreciate your reply. Have appt next Monday so hope to find out what's what then.

Gillian

[Choski]

Hi Gillian

You've had a huge shock especially since it doesn't seem as if you've had formal feedback from your 2nd surgery - or am I wrong?

It sounds as if you've had the surgery and that should have provided the Pathology report details of staging, grade etc. Report follows usually 9 to 14 days afterwards.

You should also have been told what your next steps are in relation to meeting with your Oncologist, what your treatment plan will be etc.

I can fully understand why you feel so alone and bereft- do you have a CNS (Cancer nurse specialist) ? If so ring her/him and say you feel adrift and what's going on? If not then speak with your Doctor and ask for their help and support. You may also have a contact number for your surgeon- if so ring it and ask what's going on.

Sometimes things are handed over to other departments and people and get lost or delayed, I would say that it's vital to find out if that's what's happening in your case.

It can be hard to pick up the phone and ask but you have to do it. Write down what you want to ask/say , take a deep breath and go for it.

You need info and confirmation that there is a plan for you, that brings a certain level of control back in to your life.

You also have your dad's history in your mind and your children- lots of stress going on and dark thoughts so it's important to get facts and to know that there is a plan for you which will be doable..

We all cope with this in our own way, I just DO- I'm not brave or warrior - just get on with it on a day to day basis.

Please make those calls today and let us know how you get on and what is planned for you

Thinking of you

Clare xx

[GillianWright in reply to Choski]

Hello Clare,

No, you're right, I have not had formal feedback yet, it should have been 2 weeks after surgery but that was Good Friday so no clinic. Now delayed due to Easter backlog apparently and also because my case has presented some problems - one being that the mucin leaked from the ovary and has found its way around my abdomen - so the MDT deliberating more. Have an appointment next Monday.

I have tried phoning the CNS a couple of times and get an answer phone. Saw GP this morning for 2nd sick note and couldn't help being emotional but he wasn't interested. I suppose from his point of view I should be doing what you suggested and contacting the CNS. I'll try again.

Clare, you have been through so much yourself, and yet you have been able to give me a reply that is full of decisiveness and optimism. I can't tell you how much I appreciate what you said.

I'll make the phone-calls. Thank you.

Gillian

[Katmal-UK]

Hi Gillian You are in shock. You certainly aren't letting anyone down and I note that everything you are reading sounds so uncertain and final. I take it from that that you have been googling (a mistake we all make!). Google can't tell you what till happen to you, statistics can't tell you what will happen to you, you are not a statistic. YOU are an individual whose journey is your own. I started my journey in 2007 (aged 48) Stage 3, feeling pretty much like you do now. As you can see, despite 2 recurrences I am still here, currently NED (no evidence of disease). OC is treated as a chronic disease. Not everyone have a recurrence, my mum had previously has the same cancer, same stage, and didn't. There are many treatments available with new ones coming along all the time (I am currently on a trial drug and working full time, something I have continued to do for the last nearly 10 years). If you are struggling (as most of us do from time to time) it may be worth asking for counselling, although I think once you have a treatment plan in place and a better understanding of what's happening you may not need this. In the meantime I'm sending you the biggest hug I can muster. Feel free to ask any questions. Kathy xxx

[GillianWright]

Hi Kathy, I know what you mean about Googling. When this awful 'journey' begins you are overwhelmed with info and websites to look at and often it is very hard to remember, like you said, that we are all individuals. You talk about working full-time during all of your treatment - you're amazing. I desperately want to go back to work and sick pay will soon stop but I work in a school and - well, to be honest I have been having nightmares about teaching in front of a class and they are laughing because I have no hair. I don't know what to do regarding work. I don't know what's 'normal' in situations like this, do I ask the CNS, do I contact my teaching union? Sorry Kathy to be so irrational, I can't see the wood for the trees. Very much need to know what's happening, and that will hopefully be Mon 15th.

Thank you so much for your reply. Hugs are essential

I hope you're feeling well at the moment.

Gillian

[Katmal-UK in reply to GillianWright]

Hi Gilliam

I don't know what age group you teach but I can't see anyone laughing to be honest, plus there is always the option of a wig or headscarf etc. There's nothing 'normal' in this situation. I didn't work full time during treatment, usually took about 18 weeks off and then returned full time after that. If I were you I'd speak with MacMillan they are very helpful regarding employment, they gave me excellent help and advice. Roll on 15th then you hopefully will have your plan in place. Do let us know how you get on. Kathy xxx

[Caroles1]

Hi Gillian,

The ladies have given good advice,

Please don't Google, you have to remember that isn't you,we all have different journeys and it sounds like you have been caught early.At your stage we all felt in limbo,but once you know what is going on and a plan is in place,you will feel so much better.

I was caught at 1c, but had ascites and looked 6 months pregnant, was still told at that stage prognosis wasn't good,but I had my op,6 months of chemo and I am still here NED and living life to the full.

Try not to be scared and treat yourself,do what you want to do whilst waiting and don't worry about work at the moment.

I don't know what age you teach,but I know another lady who is a teacher and none of her pupils laughed,kids can rally round in situations like this,but, anyway, you don't know yet wether chemo is on the cards,try not to think too much love,it will drive you mad xxx

[GoldenGourd]

Gillian I can almost feel the stress and anxiety in your post and really want to send you some calm and warmth. We are all on this forum because - well because we are all facing the same kind of thing but we are all living through it differently. I'm sure things will start to make more sense and you will adjust, it's just that right now you're on a sort of motorway service station where nothing is certain and everything feels alien.

You are probably going to be fielding shedloads of advice and suggestions so I will keep it brief but heartfelt:

Do not google, only Cancer Research and Macmillan

Find out which is your local cancer support centre, such as Maggies etc and go there. They are full of advice, support, tea and a sense of calm.

Remember we are still here, many beyond what we were told we would survive until, many with children and loving families, all have a different story and all help each other here.

You are never alone and you need never feel guilty about being ill or having put those close to you through this. Seriously. There are good times and gems to discover whatever else you have to face. Please believe that, it is true.

Take care and keep chasing the CNS.

Netti xx

[Anne-2]

Hi Gillian

I'm a teacher too- I'd speak to your head first and if he or she isn't very helpful or sympathetic, I'd talk to the Union afterwards. If you have a permanent contract I'm sure your job will be safe, but, as a professional, I expect you are worried about your class or classes. They will cope, just look after yourself. Good luck with next week-you'll know what you're dealing with then.

Love and prayers

Anne

[January-2016-UK]

Waiting for a full diagnosis and treatment plan is really difficult. Once you have a plan, you will be able to concentrate on that. I know how difficult it must be for you with Easter intervening and delaying results; I had the same but at Christmas time. But the results will come through. Good luck for next Monday.

As for returning to work, you cannot even begin to contemplate this until you have more information. I'd suggest keeping your employer fully informed with as much information as you have. This will help with their planning to provide cover for you.

In the event you are given a type of chemo that causes your hair to fall out, it is probably unlikely you would want to return to school without a wig. I looked a lot better in my wig than my real hair, they are very realistic these days, even the relatively cheaper ones.

One thing, you are not personally letting anyone down: your family, your pupils or your colleagues.

Good luck for Monday. If you think of any questions, just pop on line again, even late at night. We have members in Australia and the US (plus other countries) and they will be on line while most of the UK is sleeping.

You may want to try and calm your mind while you're alone, either now or later. If you search here you will find information on Mindfulness which I know many find really useful.

All the best for Monday!

[GillianWright]

Hello, I signed up to this forum only this morning having found the website by accident and then read a lot of your posts. I put on my first post not really expecting anything. I can't believe the response. All of you. Thank you so much. Your words and advice have meant more to me than anything over the past few months. I'm already beginning to feel more rational and more hopeful - not that I'll be cured - but that there is a way through this. And along the way I'm finding some wonderful, selfless, wise women who really understand what this is all about. Roll on the 15th. Thank you so much.

Gillian

[Spencer2016]

These women are amazing. Providing encouragement, advice, wisdom, support, friendship and even some laughs. When you are feeling scared or alone, please come back! 🌸🌺🌼