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?

Hi everyone!
I hope all mothers had a lovely weekend. I did. The sun was out and it felt like spring.

We borrowed back the puppy for a day and took her for her 1st 'free' walk on the common, which was a lot of fun. She met so many new dogs, including a 3 month old beauty - either a St Bernard or a Newfoundland. The two of them trying to play together was hilarious! (Pup is spaniel.)

Lovely lunch out yesterday and some very thoughtful presents from the DDs. Some good stuff on Netflix - new season of Grace & Frankie.

MynameisnotMichaelCanie thank you for your post. It made me cry but I'm glad you posted it - it does help.
Annandale yes, I was wondering about a title edit - I will report.

I am looking forward to Friday and the oncologist appt. I want to get started on beating this. It's going to be hard, I know that, but so many people have gone through this - and similar - and the only way is forward.

Hi Twitter , I've finished treatment and come out the other side and next month will mark 1 year with no evidence of active disease .

I was also stage 4 and as well as a hysterectomy, I had part of my bowel removed , i had surgery then chemo (6 x paclitaxel/carboplatin) and finished off with 5 weeks of radiotherapy. From surgery until the last radiotherapy was 10 and a half months .

How have your veins been throughout this ? If they have struggled it might be worth asking about a picc line . My first chemo my veins went awol, the only one they could find was in a finger ! It makes it stressful before they start .

Sounds like you had a lovely little walk with the pup and a great day yesterday .

Twitter as a dog-obsessive I'm chuckling at your description of the puppy attempting to play with a bear cub of a large-breed I am sure that was a joy to watch. Does she have one of those super-enthusiastic spaniel waggy tails? I recently met an adult Newfoundland; it dwarfed my collie cross and I just can't imagine having such a huge animal in the home.

TQ, good. I really hope it won't end up applying to you. I always say I had all the love for a whole lifetime in two decades from my mum.

Squeeze those girls of yours every day.

Big squeezes from me too.

Hi TwitterQueen.

I've just read the whole thread. I don't know much at all about any of what you are going through, but wanted to let you know that my lovely friend went through very similar about two years ago...her prognosis from the start was not good. However, after a fucking horrendous year and a bit, is now completely well, and feeling better than ever.

Sending you bundles of cashews luck. [ brew]

Thankyou Stila
Yours is exactly the kind of positive story I need right now - and your friend's Chimchar. The hospital has sent info on paclitaxel and carboplatin so I'm guessing I'll be on those too. Did you lose your hair?

I'm still loving the cashews, though I have reduced intake a little.... Likewise with the blue cheese.

Michael at least it wasn't one of the Leonbergers! There are a couple of young ones around too, and they're even bigger!

Really sorry this is happening g to you. Had to ask if you've revisited the option of going private again?

A relative had stage 4 bowel cancer that had spread to liver & peritoneum at diagnosis. She went on to have chemo & surgeries all privately which included a years worth of avasti, which in all honesty I think saved her life. 6 years on & is cancer free.

No way would she have had the Avastin on the NHS, sadly but I believe it was a game changer. Applies to ovarian cancer too I believe.

WhoKnew I will ask that question on Friday. I had dismissed going private because there doesn't seem to be any advantage in terms of time, who I see, treatment etc, but I hadn't thought about different kinds of drugs...
Thank you

Hello Twitter Queen,
I am just posting to send you my suppport, and to let you know that I am thinking of you . You sound so stoical and strong, I wish I could do something practical to help in some way. Do pm me if you need anything sent/bought/ etc . I do mean it .

My mum is on a clinical trail for oc at Watford Hospital. She's getting Avastin on the trail. She's had the cold cap before each chemo and has kept all her hair.

Keep up the positive attitude - it makes a difference (obviously doesn't mean you can't be fucked off as well). Mum lived on peanut butter and rice cakes in hospital.

Don't do anything rash - mum almost threw out all her high heels for some reason but luckily didn't.

Yes do ask. My relative saw the same doctors in roughly the same time frame but private, in all honestly, it was much nicer.

I'm a big advocate of the NHS, I'm a nurse and have worked in it for a long time but it is under a lot of strain at the moment and staff and resources are stretched.

Private (if you have it) has the benefit of free parking, less waiting around in a nicer environment, with less people. There can be more treatment options, plus she was able to have a portacath for chemo rather than be canulated each time or PICC line, own room after surgery etc and it was all pretty seamless in terms of blood tests, scans, appointments being easily accessible at convenient times.

There is a lot of toing and froing with this type of diagnosis and when you don't feel well, comfort is everything.

Just something to think about.

I would add, NHS care is still excellent btw just more bitty and less comfortable.

Twitter unfortunately that combo does make you loose your hair . I used the cold cap , lost some of the longer hair , luckily the day before chemo as well as cutting my bob shorter my hairdresser thinned it out lots . If I had to go through it again , I'd bite the bullet and cut it much shorter/lots more layers to cold cap. Now , I could be Roger Daltrey's 'Tommy' looky likey lots of very curly hair !

I have a shih tzu and we regularly meet a bernese mountain dog on our walks . We first met him on his first walk after injections and he was about the same size as my boy (who is fairly big for a shih tzu ) now he is 16/17 months and 8.5 stone

I've been lurking since the beginning, but wanted to surface and let you know that I've been thinking about you, and to wish you luck for Friday.

Hi Twitter, My husband had non-Hodgkins lymphoma(stage 3) and as we were with Simply Health and he was in a lot of pain that stopped him sleeping, we used that for the initial diagnosis, consultation, biopsy etc. Our GP recommended this as it would have been several weeks to be seen on the NHS. However when he got to see the Consultant, who worked in the NHS and privately, he was told that the drugs to treat his illness would be in excess of our £50,000 limit on the policy. We had already used some of that on the consultation and diagnosis etc. He advised us to use the NHS as it would be difficult/impossible to switch from being a private patient to using the NHS when the £50,000 run out. (I only found out about this limit when I made the first claim).

So we did as we were advised and the NHS treatment was truly excellent and I believe that the drugs used on him, RCHOP, (sorry abbreviated I don't know the full names) were the same as if he'd gone private. We got a cash payment for any Day treatment and overnight stays, which were a Godsend as we are both self employed. Two years later he is fit and well, just gets a bit more tired than before, but still works 10-12 hour days, with the occasional siesta. Still plays golf, come rain or shine, 2 or 3 times a week.

So it might be worth looking at your health insurance to see if there are any limits on your treatment, yearly or in full for the one illness. The cash payments are helpful but you would have to balance that as to whether your health insurance might pay out for some drugs that the NHS might not in your case.

Wishing you all the best, I hope you start your treatment soon, with good results. Apologies for any spelling or grammar mistakes. I love cashews too.

💐

I forgot to say, I have 3 sisters in their seventies and two have recently undergone hospital treatment. One for an aggressive breast cancer, surgery, chemo, radiotherapy and then drug therapy. The other was in hospital for a 4 hour kidney operation to remove a stone that nearly killed her a few months ago, as she had septicaemia through the various infections that it had caused. Both have had excellent NHS treatment in the past 6 months, they live in different areas of the country but both have praised the treatment that they have received.

Hi Twitter, just popping in to wish you luck and to clarify the point about recording consultations - this is absolutely fine, there are no legal restrictions on this and you don't need to ask permission - although its obviously polite to do so, your doctors can't refuse. Chapter and verse here: www.nhsbsa.nhs.uk/Documents/SecurityManagement/Patients_recording_NHS_staff_in_health_and_social_care_settings_guidance_May_2016.pdf

It can be really helpful to have an accurate record of conversations, and to use the voice memo on your phone to record any random thoughts or questions that occur to you in between appointments.

Remember we're all rooting for you

Twitter I read your first post back at the start and I remember being pissed off at the 'helpful' advice you received on weight loss when it was glaringly obvious that this was actually something else.

A few times since then I had thought 'I wonder what happened to that lady who posted...'

When I saw this thread with the updated title my heart sunk. I've read through and I'm so sorry for what you're having to deal with. It must be terrifying. I don't really know what else to say. But I'm thinking of you.

Hello Twitter.

I am a chronic insomniac. Woke at some horrible hour this morning, reached for the iPad and found this thread.
Thank you for sharing your fascinating story. You are a very brave woman. Sending you warm thoughts and handholding.

Morning all
Thanks again for lovely wishes and comments.

I'm trying to be strong and stoical but I don't feel it most of the time . I'm going through all the 'why me?, I don't want this, make it go away please, I don't want to be a cancer patient for the rest of my life,' stuff right now.

I've had a shit 9 years (as have the DCs) with exH's stage 4 leukemia diagnosis, deathbed scenes in hospital, his bone marrow transplant & subsequent recovery, highly acrimonious divorce, his EA, refusal to pay mortgage, child support for the DCs etc. Just as the DCs are coming up to adulthood I was thinking "Yes! My time now! I can stop worrying so much, live a little.. maybe even think about dating" And now this.

I am strong though. And aside from the occasional self-pitying rant on here - which I know you will forgive - I will make be making lots of lemonade.

Hi, TQ1.

Just a quick note to say that I am thinking of you and that you are being gracious and strong in the face of adversity.

Wishing all the best.

@TwitterQueen1 Good Morning!

Still no practical help from me but some more cashews and 1lb of caster sugar for your lemonade.

The last decade does sound grueling.

Rooting for you & here in virtual support for you.

Hello twitter - sorry you've had such a crap few years. I find it very odd that some people just seem to have one trauma after another, but others seem to have it plain sailing - life just doesn't seem fair sometimes.

Just been thinking about a friend who had very aggressive cancer in her stomach - she had her stomach removed, plus her gall bladder and spleen, and had huge amounts of chemo as it was discovered in her lymph system. She has about a year of her life that she can't remember at all due to the surgeries etc, but that was 20 years ago and she's still going strong now. I'm always amazed by her and it gives me fresh hope that things don't always turn out as bad as it first looks - give it a few months and your "you" time can begin after all

Wishing you lots of luck for your appointment on Friday - will you take someone with you to help/prompt questions, take notes etc?

It's only natural to feel this way, and it's still all sick a shock and so new. Don't be hard on yourself

*which included a years worth of avasti, which in all honesty I think saved her life. 6 years on & is cancer free.

No way would she have had the Avastin on the NHS, sadly but I believe it was a game changer. Applies to ovarian cancer too I believe.*

This x100. If you have private cover, please please do see someone privately. Avastin is a game changer for many ovarian cancer patients. It is really limited on the NHS, some heath authorities won't give it at all, some will give it within specific parameters. In many cases it's part of standard first line treatment privately and the results are looking good. It's expensive, but the drugs privately are more varied and the waiting times are shorter not to mention you'll only deal with your consultant and not different doctors. Lots of positive thoughts to you