Obese but with pretty normal legs / arms etc but very fat, enormous belly ***Ovarian cancer diagnosis - title edited by MNHQ at OP's request***

[TwitterQueen1]

Hi
I'd be glad of any advice or personal experiences here. I am around 4 stone overweight, so definitely obese. Most of it is on my stomach though, which now looks like I'm 11 months pregnant with triplets. I'm in my 50s so this is not a possibility. It's very painful and I am short of breath when I walk etc.

I've put on a lot of weight in a short period - 10lbs in 2 months.

Six months ago I was bodyboarding in the sea, walking every day and doing an exercise class every week. Now it's a struggle to do anything.

I'm having bloods done on Friday but any ideas / comments? Am I just unlucky to pile it all on in one place?

(I'm reading and travelling my own OC journey ATM.)
Just posting in case this is useful to you but very much wishing you an effective treatment path, a good professional team around you and a supportive family and employer.

I found it a bit of a rollercoaster from diagnoses but if there are things you want/need to do at work you may decide to go in for a few days now is an option, once into the treatment it did have a way of becoming a fairly all encompassing experience I found and I have been off for three months with a further three months off expected.

Thinking of you, best wishes x

Pimmsy I'm loving the 1940's style commentary on that video!

Yoohoo anything you say will be useful to me, if you feel like sharing, and maybe also to everyone else. I feel like ovarian cancer is the hidden one - no-one knows very much about it, which is partly why I'm trying to talk about it a lot.

Another good friend popped round today. No cards or flowers thank goodness, but lots of yummy food (including nuts) and instructions to eat. OK then! will do! After months of depriving myself to try to lose weight I now have to eat to gain strength for chemo.

So sorry for your news Twitter. When you mentioned gaining strength for your chemo I remembered reading about the benefits of fasting while doing chemo, apparently dramatically reduces side effects. Let me know if you want to hear more and I'll look up some references for you

I am with you in the talking about it I have taken this stance as you never know who might help or be helped.

Having said that as I bought pineapple and passion fruit yogurt with cheese and onion crisps in the corner shop today on an emergency mission the shopkeeper gave me a very funny look and I simply explained the chemo does for your tastebuds and energy levels but this might just do the trick. Momentarily they did make the perfect snack. Classy.

Something I did was load my kindle with books, update the iPad, set out a handbag with pen, notebook, water bottle, change purse, fruity sweets and chargers, headphones, then I am good to go to any appointment/waiting room. Choose a biggish bag as they may load you down with booklets and maybe boxes of pills too.

Consider taking a note taker to appointments with you. DH does this admirably and it is essential to stop me dwelling on a random downer and help me remember the balance and relative importance of information I have been given.

There are lots of support organisations and resources when you are ready for more information. I'll post some links later of where has been recommended to me, I don't Google on this subject anymore ;)

Twitter - I read this thread last week and couldn't think of a single useful thing to say, and so said nothing whatsoever which is the crappest sort of non-response imaginable. You've had a hell of a time - and I'm sorry. It sucks. I like the sound of stylish kimono though - woefully underrated, the kimono. If I could wear one to the shops, I would.

@TwitterQueen1, I'm not really sure what I can add after your latest update, I don't want to say the wrong thing. Although we've never met I'm sending you an imaginary lasagne for dinner tomorrow night, to be followed by some imaginary brownies from the Hummingbird Cafe recipe book. There will be cashews with wine before dinner.

I hope you work out something good with work. Another reason to let school know what is going on is so that if your youngest acts angry etc at school she is treated with kindness. Do they have counsellors available to students? She might want to talk to someone outside the family.

'''''''''''''''''''

Thinking of you.

My mum started her oc diagnosis just like you in Nov 2015. They drained 9litres off her twice before she started chemo as the tumour was producing so much.

She was stage 3 C. Like you said you don't know you've got it till late.

She had the course of chemo before the op to shrink the tumour and reduce the blood thinners as she had pulmonary embolism.

We are now 16 months later and she's just finishing her treatment. Used the cold cap and managed to keep her hair. Had full hysterectomy and abdominal scrape and now all looks good.

Keep eating and an eye on your white blood cells - mum used it as an excuse for red wine, steak and guiness!

She says being sick is a full time job - chasing drs/nurses, having bloods and treatment. Keep all you stuff in a folder.

During treatment - Get people to make you food parcels - mum barred most visitors from the village but they all left parcels on her doorstep. Her dp also sent an email round to all friends / extended family to keep everyone up to date as they didn't want lots of calls / having to repeat themselves 20x.

Good luck and remember to put yourself first!

Bloody hell, TQ

Your friend with the food had it about right!

Loving the cashew video (have shared it because I love cashews when I don't hate them - weird things they are) and the realistic cards.

Ooh TwitterQueen I stumbled across this thread and had to comment. My mother had stage 3 cancer (breast) when I was 19.

I just wanted you to know that your daughters will be very very proud of you! Chemo is hard but you sound well and I am certain you will fight it.

Don't be too proud, if you want to cry in front of them do! You don't need to be strong all the time. They will love you and be proud of you whatever! Xxx

Oh TwitterQueen

How utterly crap.

Lots of people have come up with great ideas about food, how to approach chemo etc.

Two thoughts:

• you mention work, and H R. My experience is that most employers are really sympathetic in these sort of difficult circumstances. With a diagnosis of cancer you also are deemed to have a disability for the purposes of the Equality Act, which means your employer does have additional duties towards you.

• have you got plenty of music loaded onto your phone? You might not feel like doing anything active, even reading, but the right music (not that Jesus song!) makes such a difference. And scent, of course. (So it was three thoughts).

TQ, wishing you best of luck with the treatment. It is truly shit that you have to go through this! If you can, going in to work a bit might take your mind off things, and it will help with the arbitrary deadline of 20 weeks sick leave. But don't feel you have to if you can't face it. As far as 20 weeks goes, lots of employers have discretion to carry on paying you sick leave in exceptional circumstances - which cancer treatment is.

Everyone
Thank you so much for your posts. You have no idea how much you lot are helping me. I can be honest with you all and I really appreciate all comments / suggestions / stories.

Now - good to hear positive stories. Best wishes to you and your mum. 9 litres, twice. Barf. Mind you - the relief when it's draining is fab!
BigGreen Now I want brownies!
Hassled say what you like! It's good to talk
Yoohoo I'll pass on the pineapple - but if it works for you, great!

Hi Twitter only just seen this thread and I have to say I am gobsmacked with how long they are taking over the treatment for you. I can imagine this is very scary for you, and your writing is inspirational I have to say. From a fellow cashew lover.

Oh and I have a recipe for an amazing 'cheese' sauce based on cashews for when you want something tasty but light. Where are you based if you don't mind me asking?

Lurker but couple of things which may be useful.

When my husband had cancer there was a similar gap between diagnosis and treatment starting. Very frustrating. But things are happening in that time. Extra tests, scans etc. So i doubt you will be left in limbo. The tests will be to find out exactly what's going on and to play the best treatment.

Dry roasted peanuts worked a treat for nausea! That plus coke.

Another one wishing you all the best Twitter, sending hugs and strength for your treatment.

I've also been following this twitter, so sorry it's not better news but pleased there's a plan.

Fwiw it's worth my mum has also had a wait between diagnosis and treatment - it seems barbaric to me to give someone a diagnosis like that then tell them they to wait weeks for treatment. It is worth phoning the consultants secretary to ask to go on the cancellation list if any appointments become free? (My Mum did that and got an appointment the same day, not sure if it works the same everywhere but maybe worth a try?)

Will be thinking of you

TQ - I've been lurking and reading your updates. Sorry that you are facing this. I would reiterate the suggestion of some Bose noise cancelling headphones for your appointments.

Can I ask a question of those in the know? Why don't the medics try to remove these sorts of tumours ASAP? Why wait?

Beryl - I think they often try to shrink them with chemo/radiotherapy before surgery (especially if they're so big that it would be difficult to remove).

I don't know why they delay treatment/surgery once they've decided though - I can only think it's either resource (they can't fit it in before) or they don't think a few weeks will make a difference to the outcome (i.e. They don't think it will grow significantly in the time).

The thing is that these decisions may well be appropriate medically, but when you tell someone they have cancer you should be in a position to kick things off straight away, not make them wait agonising weeks thinking they may not have long left..,

That does seem a long wait TwitterQueen.
Is it after your DD's 18th?
I think you said that was in three weeks.
Is that something you could focus on as a distraction.
It's good to hear you feel well in yourself right now.

Another one who loved theCashew video.

Sorry you're still waiting Twitter ..
Whilst they were draining 10 litres of fluid off me I had a visit from someone from the gynae oncology team , who had a chat and told me that they would then have a meeting to discuss my case . I went home from hospital later that day and it was about a week later that they rang with an appointment to see the gynae oncologist which in turn was 11 days after the drain. By then the fluid had started gathering again . The worst thing about the wait was having disturbed the cancer everytime i went for a wee I could smell it , i wanted to rip it out myself !
Hope you hear from them soon .

Can you look into paying privately for the first sets of treatment to get it done sooner or would this be a horrendous cost and not actually make it happen sooner?

Please bear with people saying the wrong thing - at least they are trying and you can see they care however misjudged it may be - it's worse when they are silent or don't try at all.

A mixed bag there, TwitterQueen . When I used to work in oncology diagnostic teams, patients were often quite surprised when they were diagnosed with a cancer and then told that they would begin treatment 6 weeks later. But there were very good reasons for it and if there was ever a case where that time frame would make a difference to the outcome for a patient, they would be treated sooner.

Is your work the kind of work that you could do flexibly? That might be a good compromise. If you were able to go in for odd days or part days as you feel able and take sick leave for the rest.

Good morning TwitterQueen,

I'm abroad so with a different healthcare system. I had only a 9 day wait between diagnostic and start of chemo. Which was a blessing really because I didn't have to much time to think.

I did get a shitload of valium sleeping pills and xanax for those 9 days and spent them blissfully unaware of anything whilst my partner friends and family rushed round planning for things to come.

To start off with I did try to do the whole "I am strong, I can cope I don't need your drugs" palava

I called a good friend and told her I wasn't going to take the drugs, she said, "you know what, you should sort things out with your employer, but once you've done that, you should accept all the drugs they are offering, you don't need to be fully aware right now, you don't need the fear or the panic, you just need to rest, take the drugs."

And I did. And for me, at that point it was the right choice. As the doctors said, we aren't giving you these drugs because you are depressed or because we think you are weak, we are giving them to you because this is a shit time and unfortunately right now we can't do anything else to make it less shit, fullstop.

What I'm trying to say in a very longwinded way is this,

You seem like a very strong and grounded woman. But you are allowed to not be strong right now. No one will condemn you for it. Not even your daughters. You are allowed to be a mess. Don't waste your strength.

Wishing you all the best for today, I hope a little thing makes you smile.

Morning all
@LaCerbiatta yes please, do let me know of the info on fasting during chemo. I'm guessing because it's affected the stomach lining and the chemo will obviously target that, that I may not feel like eating anway but it would be good to know.

Beryl as curtains says, no op because the tumour is too big (23 x 20 x 14) and it's all over the place, so they can't operate until it's smaller and more manageable. Similarly, they can't do radiotherapy because it's a dispersed mass, not a neat, contained one.

I am fortunate in that I work from home (large tech company) so I don't have the hassle of commuting or having to dress up. And I can be very flexible.

Ominous silence from my manager, though HR have cleared me to go back tomorrow. I know she won't want me to go back - she wants only 100% focus and illness is a messy thing that she clearly can't cope with. I have a feeling she will try to stop me.

I am the opposite- thin with enormous calves and ankles. I can go to the gym everyday and diet forever but still live in jeans as my legs are not pleasant to look at.