Stage 4 Ovarian Cancer @ 33yr old Palliative Care.

[studentlife89]

Hi,

Am sorry am not a cancer patient but i have joined for advice really because i have an auntie who am very close to, she was diagnosed with Ovarian cancer at the tender age of 28, she has never really have a fully active life as she was left paralyzed from chest down from a RTA when 3yrs old, and she has never had children although she would have loved to have them. after her diagnosis she had a full Hysterectomy followed by a 4 courses of aggressive Chemo and Radiotherapy.

afterwards she had a year of what she and everyone else thought was remission but then she started to develop night sweats and pains and bloated feelings. she found out the Cancer came back but over the past 4 years after having a numerous amounts of palliative chemotherapy it unfortunately has spread to her lymph nodes, liver, stomach and lungs.

its such a shame and its hard to see such a lovely, kindhearted, happy woman being stripped of it all by such a terrible disease, you can see she trys to put a smile on and bare the pain with her morphine shots but at night she cries herself to sleep, i want to talk to her and ask her how she really feeling, she dosent seem to go out much now and is stuck in her room allday. i really feel for my nan (her mum) she is getting on now with a bad back and she is so stressed out a depressed with worry for her n the high demand for her care needs,but she too proud and wont accept help untill the very end.

sorry for the essay lol, i just thought it was nice to give the whole picture, i love the both so much and i want to help, so if anyone cud give any ideas i would be most grateful

[wendydee]

I am so sorry to hear of your Aunt's condition. It is hard for patients and their families, I know. Really, your family need some support while your Aunt is going through her journey. Are there any Macmillan nurses involved, or anyone at a local hospice? These facilities are absolutely wonderful and can help all the family so much in so many ways. They really understand what a difficult time it is for you all.

However, you have taken a brave step towards supporting your Aunt by coming on this website and getting support from the many women on here who have been through an ovarian cancer diagnosis. We all have our different cancers, different stories.

You say your Nan is a proud woman and won't accept help, but if it can be explained as if your Aunt needs her family around her to support her, then maybe she will have a chat with someone who can support you all. Macmillan and hospice nurses are not just for the very end, they can make the time leading up to that point so much more meaningful and calm for the person who has cancer and their family too. It affects us all, doesn't it?

You must be a very caring niece and if your family can access the help that your Aunt is entitled to, I'm sure it will be easier for you all, even if it's just someone to talk through all your concerns. My husband and I nursed and supported, then were with my mother-in-law last year at the end of her life, and although it was a really sad time, there were moments when there was a sort of contentment and a sense of calm. We helped her to have the best ending she could have done under the circumstances. I'm sure your Aunt deserves this too.

All the best,

Love, Wendy x

[Hidden]

Sorry for this brief comment. I am an ovarian cancer patient too, but I was diagnosed aged 55 with stage3 OC with grade 3 cells, and initially I had just a slightly better prognosis that your aunt - 25% five year survival as opposed to 15-20% survival.

But, two years after my diagnosis, I am disease free and my survival propects have increased markedly.

My message is this - as long as your aunt is alive, there is still hope. She sounds like a very brave lady who has struggled so very much in her life already, but it is certainly not true that there is no hope. There is always hope, and now new developments even in the treatment of such advanced cancer as your aunt has are literally popping up almost every day.

I would suggest that your aunt asks urgently for a second opinion to a major cancer centre specialising in ovarian cancer, if she is not at one already - if she is, she is unfortunately not in the right place, because there are a number of ways of dealing with the problems she has, that I have heard of from friends who have benefitted from them. The ovacome nurses on the help line will swing into action to help her - please call the number listed on the main Ovacome website. Also I will do anything to help if I can - I don't know where you are in the UK, I am in East Yorkshire but I go often to London where my partner works and has a flat. I think you can send me a message for more information - I am busy this bank holiday weekend but I will be free on Tuesday, on Thursday I go to London and after an overnight trip I will be back here for 10 days - I am having surgery for carpal tunnel syndrome which is a hand problem which is making life a bit difficult at the moment but once the op's done I will be a lot more capable of doing normal things, driving a car, etc..

Please do the best you can as a niece - your Mum and your Aunt both need support and it's a tough one to land on your very young but broad shoulders. You've done a great job already by finding this site - so please take it easy for a couple of days and wait for the week to begin so that hopefully we can all start to help you and your mother and aunt more than we can on this posting site.

Chrystynh xox

[studentlife89]

Thank you very much for your kind words and information, i am sorry i forgot to mention i am her nephew, i hope you dont mind as i came across this site through my auntie mentioning it to me as it is her favorite charity and because of that i did a sponsored costal walk of the Wirral ( were i live) to raise money for Ovacome.

My aunite has been seen by the Macmillan and District Nurses but what i meant by my Nan being a proud woman was the fact that she won't have a break, she is 60 has a bad back, is exhausted and becoming depressed from the strain of looking after a palliative and disabled woman, i feel for them both, and wish there was a way to tell my nan to take it easy and to allow my auntie to confine in me to share her feelings.

she does always check the news for cancer drug developments and every morning she rubs her stomach with holy water in hope it will take the pain away, she a spiritual woman.

thank you for your comments

Adam

[lill]

Dear Adam,

Your letter touched me deeply and I realise that often it is the relatives that suffer the most emotional strain in cases like this, because they feel helpless and can't easily imagine what the patient is actually going through. Most of what people have written above makes sound sense. My suggestion is, as you are clearly close to your nan, could you persuade her to come on this web site, with you at her side to support her, to air her distress? She is being so brave trying not to reveal her despair to the rest of the family and really needs an outlet to to release some of the strain. You sound a lovely, caring young man and I do hope you get some answers that will help you help your nan. Well done to get on this site on her behalf. Best of luck,

[wendydee]

Hi Adam

Sorry I assumed you were a niece :-S

What you are doing is really caring and helpful. Maybe you could ring the nurse helpline (0845 371 0554) when you are with your Nan, so she can talk to one of the nurses on there, to get some ideas for further help and support for her, if only to talk and reassure.

Thinking of you all

Wendy xx

[overcoming10]

hi there. I am so sorry for her and for you all. I also have stage 4 ovarian cancer for nine years now. treatment goes on and is successful; but I find the biggest battle is in my mind. can you try and be really honest with her and just open up and get her to talk or draw or anything that may give her relief. The fact you care so much for her and to write for help here is fantastic. fab that she has you. Ask her to talk of her fears and hopes. Get a good support network around her- you get someone to help with this. you cant do it alone. I always pray too. Tell her she is not alone.

[Gwyn_1 in reply to overcoming10]

This post is four years old, so we can't be sure that the person you are trying to help is still with us.

It would be wise to check the date (on the top righthand side) before replying and to only make comments on recent posts.

It could be upsetting to relatives and friends who might still be reading to receive advice on loved ones that are no longer here.