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 am so sorry TQ. Could your GP help as well? Awful for you to be kept waiting. Wish I could unblock the system for you. Such totally unnecessary added stress .
Thinking of you and do hope this gets resolved asap. X

That's crap !
Surely , the surgeon who did the laparoscopy should be arranging this. Keep badgering !!
You should be getting discussed at the oncology team meeting!
Going private wouldn't have improved this situation.
The nhs is the best place for oncology treatment.
x

Apparently it's been escalated from an admin perspective but still no-one has got back to me with a date. I've just had the 1 call saying she didn't know anything but would try to help.

Interesting to know going private wouldn't make a difference here Hairy. I've stayed NHS because it's my view too that you can't beat the treatment provided.

Absolutely true what Hairy says re nhs. Have you tried the secretary of the surgeon? I think it is just a matter of really sitting on the phone and pushing hard and being quite assertive as this is not the time to assume that someone will come back to you so you are completely doing the right thing by following up with them. Very frustrating though and probably the last thing you feel like doing. Hope you have something nice planned this weekend. Xx

Hope they get back to you asap TQ.
My mum had kidney cancer and something similar happened - in the end they went to PALS as the wait had been much longer than they'd been promised (& beyond the guidance limits). Once PALS got involved it was quick and straightforward.

Hope you can plan something nice over the weekend to distract from thinking about it.

Some legal bod called me (legal secretary to the administrative board?) which makes me think some kind of SLA has been exceeded.

Ended up crying down the phone at her as she still couldn't tell me anything and would only give the phone number I have already, and which doesn't get answered (because people are on the wards, you know).

Sorry this is dragging on. I hope you get a date soon!

Can your GP help TQ? Or do you know someone who could call on your behalf and be extremely assertive? Might be worth calling the legal bod back and say but if you do not hear from somebody with a proper plan for your surgery that you will hold the trust responsible for any deterioration of your condition and will take legal action. Another thing might be to look up the name of the surgeon and find his private secretary's details and ask if she could pass message on to surgeon. What a stress - just when you least need it. Xx

Any advice please lovely MNers?

I've just been told that apparently they can't find a date so the recommendation is I go back for another round of chemo. Aside from the fact that the 1st round I had left me feeling shite for a week, plus the fact that this will delay treatment by weeks (don't know how many), which will knock on to DD's fresher's week I think, presumably it will impact the trial as well....

Anyway, my question is, should I go private now? I am so upset by all this. I've been trying to get someone to talk to me for well over a week and explain things and talk about the treatment plan.. No-one is responding and all the while my cancer is growing inside me.

This sounds very familiar. Different cancer but my mum was told she needed an op asap, but the earliest they could find a slot (after spending 6 weeks doing tests to ensure she was fit enough for surgery) was 8 weeks away.

They contacted PALS (& asked GP to phone too) and got a slot in three weeks time.

I would do this first, whilst investigating private routes, as (unless you get the same team dealing with you privately) there can be a delay in a new team reviewing where you're up to etc.

I'm really sorry TQ, I know this is not what you need at the moment. Really hope something gets done asap.
What region are you in (in case we can make recommendations)?

Phone pals

Thanks curtains. I'm in Berkshire, which I think counts as SE. Though the op will be done in Oxford. I keep crying down the phone at people - it's the lack of communication that's so difficult to cope with. No-one is managing my case or my treatment or seems able to help me. I feel so alone.

I can't offer any advice but I am so sorry to hear you're stick and especially the shit you're going through with the red tape. It's completely unacceptable.

I have had similar red tape issues with the NHS (but not a cancer issue). It's so completely unfair.

I'm not surprised you feel like that, I think people faced with cancer treatment need an advocate who has the power to get things sorted, it's very unfair to expect you to drive this.

My mum spoke to Macmillan nurses (who she'd hoped would have some clout) but they just told her to speak to PALS. Is the op being done in the same trust as the chemo? If not, you could try PALS for both trusts, in case that makes a difference. Also see if you can speak to your GP and ask them to try to intervene. It's worth trying every avenue at this point.

Is there a friend or someone who could go/sit with you when you contact them? That might help when you get upset (completely understandably).

Absolutely try to go private for the op- ring insurance co first to make sure who and where you need to receive treatment- than go all out for first appt available- you could be having the op within a week. You can certainly return to the NHS for the rest of your treatment as that's not so urgent. You won't get better treatment privately, but you certainly could get it quicker. And the way the NHS is dicking about with your life is unacceptable. I work in private health insurance so can help with any questions. Very good luck.

Hi, I've been following your story and haven't commented before but wanted to share some thoughts on private care. I was diagnosed with breast cancer last year. My local hospital was very good and my husband works there so I really wanted to continue with it but the inability to communicate with anyone there drove me mad. I felt like I couldn't move away from the telephone in case I missed a call back and everything was done by letters in the post rather than email. Appointments also got cancelled and I felt out of control.

I had private health insurance and arranged a second opinion and was able to communicate via email or telephone calls very effectively and have appointments quickly and at my convenience. I chose the date of my surgery. My health insurer was fantastic. I had a mastectomy and DIEP reconstruction and I have had to pay a supplement for my reconstruction surgeon who wasn't fee assured but everything else was and continues to be covered including 6 monthly check ups with my breast surgeon and 6 monthly check ups with my oncologist. My adjuvant therapy is also all covered.

I'm sure the treatment is the same with the NHS and maybe even better but being in complete control of who, when and where saved my sanity.

You have the cover and you have paid for it. Please explore using it and my very best wishes to you. You sound amazing.

NHS treatment may be unbeatable (I don't know) but that's no use if they can't actually offer it to you in a sensible timeframe. In my experience private is usually quicker.

The administrative/organisational failings in the NHS can be very very stressful to deal with.

I think you need to ring your insurers tomorrow morning to find out your position- ask them about the drug trial options as well. And then speak to your GP to discuss the best way forward. If you can get the op privately then revert to your NHS treatment (if you want to) then you have nothing to lose. You may have better oncology resourcing privately too.

I've used private cover (not for cancer) and the downside in my experience was the exclusions and excesses. As a pp said, having to pay a supplement as certain consultants charge above the allowed fee rates. Also having to pay privately for prescriptions as they're not included in the policy. InSpace may have more info about that?

Sorry to hear it's so difficult.

Thanks Devon and everyone.

My surgeon rang me from his mobile on his way home tonight and it was evident that he is equally frustrated at the way things are going. He didn't agree with the 'holding' chemo either and says the gap is up to 6 weeks. He's going to try to sort something out within the next 24 hours.

The lack of staff, the lack of communication, the lack of options - it was all getting to him too. Options might be to send me somewhere else, like Hammersmith, or private. He was kind of against private because he rightly said there'll be someone like me just behind me, but said that if I've already paid for it it would probably be the better option as it would be done quicker.

I think he was also encouraging me to complain, just o bring things to the surface.

He sounded lovely. It's not his fault. But I'm the one with advanced ovarian cancer. It's my life we're talking about. So I'll give him the 24 hours and then go private.

Your surgeon sounds great. You have a plan.

Please go privately. I know that MN disagree and we are meant to all say that the NHS is better but I'm afraid this is where it falls down. Please use your insurance and get the operation done ASAP. If you can get your insurance to cover the London Clinic then Tom Mould is absolutely the best gynaecologist oncologist for ovarian cancer and the person you want to do your op.

If you can use your existing consultant through your private option I would urge you to explore this or ask him/her to recommend a colleague. You have paid for your insurance, please don't be reticent to use it. The only thing that matters right now is you and your treatment and you need to be ruthless at getting it delivered to you as smoothly and effectively as possible. Good luck.

That's a good plan OP- great to have private there if you need it. But maybe call them in the morning to check any policy limitations etc just in case?

Just on the prescriptions point my insurer told me not to allow them to give me any drugs from the hospital and instead get them from my GP. You get free prescriptions as a cancer patient anyway and my oncologist just wrote to my GP to prescribe everything that I needed which my surgery now provides. It was all very seamless.

Your consultant sounds like he's doing all he can - that's worth a lot. Hope he can have some influence.

That's just crap, it must be very stressful with all this uncertainty.

I would absolutely go private now. As I said earlier in your thread the NHS is stretched beyond belief at the moment. You have private health insurance, you could be in theatre by the end of the week, just do it. It's important to just get this rumour gone before it becomes impossible to remove. Time is key in oncology.

You also shouldn't be in a position where you are crying down the phone at people. You have options, take them