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 Twitter Good luck for Friday.

Just a little of my experience in case it is useful. Not intended to be mememe but its all I can contribute at the moment.

Oncology Appointments
I struggled with knowing if I wanted to really know so didn't handle my early appointments well, wish I had been more business like and taken a pen and notebook at least, DH has recently started to attend with me and take notes as mentioned earlier and this helped a lot, stopped me disappearing into a black hole of what ifs.

NHS
On the subject of the NHS, I don't know if the medication options are the same but I don't have any private options anyway. However the NHS have been excellent and I have found that now I really need them they seem to be well on top of my situation.

I did have a disruptive hospital in patient neighbour (sweet and friendly but lots of visitors, loud selfish behaviour and then she got very ill overnight - she was much better my the morning and snored all day between making loud phone calls, then had a 8 visitors again that evening lol) on the ward and no private room option so if there was anything I could change it would have been that, when I was just post op really so I could sleep. The night she was very ill I didn't get a wink of sleep which left me worried for her, desperate for me, exhausted, emotional and suffering a long and very frightening first episode of palpitations. On the plus side I was so keen to go home I was out very quickly!
Admitted Thursday lunchtime, in surgery for full abdominal hysterectomy by 1.30 pm, out of bed Saturday PM, catheter out Sunday, Home MONDAY teatime! Amazing.

I guess my point is a private room would have been ideal.

Post Op
I am 45, overweight BMI 35, and not the fittest specimen but this is where I am at.
I am 3 months post op today and I have been to a pilates class and survived :) In fact I feel energised from the activity despite my 'chemo hangover', I'm around 1/3 of the way through my planned chemotherapy.
Since about 4 weeks post op I have been able to do 9/10 school 'runs' (have 7 year old) which are 15/20 mins walk each way. Sometimes rest half way on a bench on a bad 'chemo hangover' day. Cook 9/10 meals and clear up after. 9/10 bedtimes.
I can still not hoover or iron as these do for my nether regions for some reason!
I do also walk the dogs some days but probably ought not to do that as they pull too much.

Chemotherapy
I am on carboplatin only, once every three weeks for 6 sessions.
It is disruptive and on days 1-12 I sleep and rest extra and both times have had two days (day 6 and 7 first time day 8 and 9 second time) were I couldn't do much at all. On these occasions I have to give in to it or I get emotional and these are the days I don't really walk or cook or read or even browse the internet.
Friends have taken me out for coffee and cake or come for short visits and understand not to come if they are not well.

Work
I had just got a new job and as a result of all this I now do not have my job any more which is a real pity but not largely relevant to your thread other than to say Macmillan can advise you on your rights to adjustments etc for work as you may wish/be able to work some of the time since you do already work from home. Unfortunately my job wasn't suitable for this, but had it been, I think I could have worked one week in three during the chemo or more with flexible hours. Everyone advises though to concentrate on my health and I agree this is good advice, especially if you have occupational sick pay. I am now making getting well my full time priority for the next three months or so and doing some study form home to improve my cv.

Best wishes, sorry for the long meandering post but hope some of it is helpful.

Yoo x

Great advice and personal experiences - thank you - it really is useful to me.

I will ask about Avastin on Friday. They have already mentioned clinical trials to me and there does appear to be one at the hospital I'm attending (RBH) so I may be given that option. I'm certainly going to ask if I can be included in the group that gets it. If not, then I'll talk to the private people again.

Twitter - you have got some fab advice here - I don't have anything useful to add at all but I do check in from time to time to see your updates.

I hope Friday goes well.

Yoo can I ask if you are cold capping ? I know both carboplatin and paclitaxel cause thinning /loss but just wondered if by only having one of them makes a difference to the hair loss or rather rate of hair loss.
Do you know if your oncology team are planning radiotherapy? 5 weeks of radiotherapy was mentioned at my first oncology appointment.
Hope the rest of your chemo is kind to you .

Read the whole thread. You come across as incredibly strong and together. I'm sure that despite an extremely challenging decade - you and your DDs can handle this as well, if for no other reason than because you have to!

In the mean time and

Please look carefully at avastin as it can cause perforated bowel. My mum had this with it...just discuss the side effects i guess.

Twitter it does really stink that just when you can imagine some 'you' time this happens. F*($# Cancer!!!!

Strong and stoical is the outside face, no need for that on here. This is your safe place to rant and rave and swear and generally kick up a ruckus. This situation you are in is well worthy of all of that and more.

Then you will shake it off, and go on. You've proved that you can do that and your DC's have learned that great skill from you. It won't be easy, but you'll do it.

Stilla My oncologist seemed convinced I would not loose my hair but it may thin. It is shedding a bit faster than usual and my scalp seems sensitive but so far nothing that really shows, no cold capping was offered.
Radiotherapy has not been mentioned for me at this point.

Sorry should explain, cold capping wasn't offered to me (presumably because it's not needed - not sure - I had planned to turn it down if offered anyway) but I have seen other patients using it so it is available in the department.

Thanks Yoo maybe the paclitaxel is the main culprit then as I was told "you WILL loose your hair" . Hope the minimum loss continues throughout your treatment .

Hope tomorrow goes as well Twitter will be thinking of you

I'll be thinking of you tomorrow

Thinking of you today, here is a hand hold for you.

Hi TQ

I just want to wish you a productive and helpful appointment today, and a plan at the end of it.

I'm so sorry you have had such a sudden turnaround from 'this is a bit weird' to now.

Hope you have a productive appointment op.

Thinking of you today, TwitterQueen.

I saw my stepmum go through Ovarian cancer - she'd had such a swollen stomach for years looking back but went to an alternative therapist rather than her GP who told her it was diet and candida; by the time my dad put his foot down and dragged her to the Doctor, she had primary OC, and secondaries pretty much in every vital organ. Her chemo was palliative, and she died within 18 months aged 38. Such a bloody waste, but for whatever reason, she was too scared to face the truth and I think she knew all the way along it was bad.

I'm so glad you've had the courage to see your GP and face this head on - at least you have a fighting chance and hope. Take it one day at a time, lock yourself away from others if you need to (my stepmum couldn't cope with questions and sympathy) and don't be afraid to rope in good friends/family in that know you well to help. Hope it went productively today and you get a visible course of action from it. Many best wishes to you and your DDs .

Thank you for all the hands here to all of you.

Stila and Yoo my notes say that Taxol does cause hair loss, but this is unlikely with Carbo, which causes thinning only (usually). I've been told I will lose it but tbh and I'm not overly bothered about that. It will grow back - and maybe even with a few curls in it!

I've signed up for the trial. There are 3 groups, each with different timings and drugs. I'm obviously hoping to be put in the group that includes Avastin. If I'm not, I may reconsider the private option again.

The consultant had to be careful what she said but implied that Avastin won't make any difference at this stage. If (or more likely, when) the cancer returns, Avastin would be better at that stage.

SheWolf yes, there are risks to the bowel apparently, but my cancer has not touched my bowel so I am considered not to be at risk.

I have to go into hospital again early next week for a day or two so I can be drained again (what fun!) and they will probably drain the lung too so my breathlessness will decrease and they will test whether or not the cancer is actually in the lungs. They haven't done this yet because it's another invasive procedure and apparently it won't make any difference to the chemo drugs.

Another chemo consult next Friday and then hopefully start treatment either just before or just after Easter. One of the trial groups is actually a weekly chemo session, which apparently they are finding effective too. It doesn't take as long as a 21-day chemo cycle (thankfully).

I know everyone says take someone with you, but tbh I found it easier on my own. Because of past experiences I am familiar with chemo and side-effects - more so than friends and family - and they would have asked questions that I already know the answers to. I was also able to listen to the projected outcomes - which are dreadful, but I am aware of them - more dispassionately than if I'd had my sister sobbing beside me, which I know she would have done.

Lots to think about.

Well done @TwitterQueen1, you seem to have had a very informative morning. Good news that you are going to be drained again next week (I'm sure there's a better way to say that). Hope you can enjoy the weekend.

Raising a cup of post-lunch coffee to you.

Great that things are moving to start treatment .
I know by the time they operated on me , Id filled up with fluid again . I had visions of them cutting me open and a bloody tidal wave spilling out

Will be thinking about you next week - will you feel the difference afterwards?

love after yourself Twitter and try and eat lots of nourishing food ready for your treatment to start.

That should have been 'look after yourself'!

Just caught up with your thread Twitter. DH takes himself to chemo, he has just had round 8 and we are expecting to have surgery in May, unless it's a really big appointment like meeting the consultant who is doing the op, only been once, then all his other appointments have been by himself, I jot down the odd question to ask.

Well done tq.
Another step along the way

I am full of admiration for you TQ. I hope you are not too uncomfortable and breathless this weekend . Thinking of you .