Hi everyone. I am a newbie to this site. I just thought I’d get some advice/support from people with experience in this particular illness. My mum was diagnosed with what they initially thought was uterine cancer last March (since her referral to the Christie it was said it had actually started on her ovaries). This had spread into her pelvic cavity, in particular part of her bowel, and also her peritoneum. She had an initial round of chemo in the hope of shrinking the tumour which it did. She then had a full hysterectomy last August and part of her bowel removed. This then left a couple of small dots remaining on her peritoneum which they said they could control with more chemo. She has had a couple of rounds of chemo. The first break she had, which was last December, she suffered with a fluid build up on her lung, which in turn made her feel very sick and she lost even more weight. She had a permanent drain inserted and that seemed to help. When she started the next round of chemo she actually improved a lot, they even removed the drain as there wasn’t much being removed plus it kept getting infected. She had a scan round about then and from what she says, had reduced the size of the small tumours on her peritoneum. She is now on another break and this time she seems more ill than ever. Has ascites build up, constant sickness and some vomiting, diarrhoea and strong fatigue. She had a scan a couple of weeks ago which she still hasn’t had the results to as she was admitted to our local hospital due to these symptoms. She had a drain done a few days ago but she still has lots of weakness and sickness. I guess what I’m trying to find out is, is it really the fluid build up causing these symptoms or is it just the cancer in general which is making her go on this downhill turn. My mum isn’t one to open up about what is really going on and how she feels so I kind of feel in the dark about a lot of things. I’m going to visit her in hospital later and intend on speaking to the doctors/nurses for more information. Has anyone had any experience with this sort for thing whether it was yourself or a family member. Sorrru for the long rambling, it’s hard to paint a picture and keep it condensed to a small paragraph
Welcome to this community although I'm sorry you find yourself here and that your mum sounds as if she is having a horrible time. It must be very difficult for you too, seeing her so sick and for you to feel that you are in the dark about a lot of things.
I think it would be good to talk to her specialist nurse (i.e. the named person she should have through having a gynae cancer, rather than just any nurse who happens to be caring for her in whatever ward she is in) as they should be able to answer your questions. You say she was admitted to your local hospital for these symptoms but is this local hospital where her oncologist is based or is her oncologist at The Christie? You really need to be talking with the "experts" rather than the more general doctors and nurses.
My mother had cancer (v likely ovarian, although never confirmed) and was eventually at The Christie, although was admitted to her more local hospital beforehand to try to control symptoms.
If it is of any help to you, I have had stage 4 ovarian cancer since 2014 (it's in the family!) and have experienced ascites a few times, which is horrible and made me very sick. I was also very weak for a while after the fluid had been drained.
One further thought is that it can be very helpful to be in touch with the palliative care team. I know it can sound scary but they aren't just there for the end of life, but to help the person with cancer and their family live as well as possible. Opening up conversations about cancer can be difficult and it sounds as if your mum might not want to ask for this herself, but the more you find out what help and support is available the easier it might be for you to suggest it to your mum.
Make sure that you get the support you need too, as you will then be in the best position you can be to help your mum.
All good wishes
thanks for your response. I’m sorry to hear that you and your mother have been affected by this horrible disease. One question if I may ask, when you had the fluid build up, did this affect your appetite and did you lose a lot of weight? My mum looks awfully frail compared to how she was a year ago. No my mums oncologist is actually at the Christie. She is due a follow up appointment for her recent ct scan, which should be next week, and I am going to make sure I go with her so I can ask all these questions. My mum actually got discharged home yesterday afternoon so I should be seeing her today.
Yes, when I have had large amounts of fluid there just hasn't been the space for food, so that is why appetite is reduced. After the fluid was drained I was left feeling very weak (I think one loses protein from the draining) and it then became apparent that I had lost weight. After the chemo started to deal with the cancer and fluid then my appetite gradually returned, but at one stage I was on protein drinks recommended by the dietician. I remember her advice to "make every mouthful count" - e.g. if eating soup then add cream to it, in order to get more protein. What one might consider a typically healthy diet in normal circumstances is not the best diet in these particular circumstances!
These are the sorts of issues that you should be able to talk through with your mum's clinical nurse specialist, and (s)he may then be able to suggest support from a dietician, for example. Doctors and nurses in non-cancer wards in local hospitals probably don't have the experience that others who are dealing exclusively with cancer patients have.
I'm glad that you will be accompanying your mother to her appointment next week and that you'll be seeing your mum today.
sorry I haven’t replied in a while. Such a lot gone on! But basically mum was admitted to christies and was only discharged on Friday. She has a matter of weeks and is now staying at my brothers where she has someone with her all the time. Going through such a range of emotions at the moment, I really didn’t think it would be like this. She is deteriorating week by week, even day by day. In a way I just want all this to be over as this mustn’t be much of a life for her at the moment.
I'm so sorry to hear this news about your mum and how hard it must be for you, your brother and other family and friends. I do hope you are getting all the support you need and if your mum has any brighter moments you are managing to make the most of them with her.
I was just going to point you in the direction of the Family and Friends group, when I saw you have joined, but in case you aren't aware there is a group for Carers too.
Do keep reaching out for support and take good care of yourself.
Warm wishes to you all
Hi jay Kay
Unfortunately my mum passed away on 22nd September, worst thing I have had to go through. Went to see her at the chapel of rest this morning, was so hard but I had to do it.
Vikki, I am so sad to hear your news, but happy that you found the strength to go and visit her. There are a couple of things I want to say. She is at peace. No more pain, no more fear, no more worrying about how you will get on after she had gone.
Vikki, all I can do is send my blessing, and hope that you will find the courage and strength to carry on and honour your dear mothers life and passing.
With care and respect,
How thoughtful of you to post here again with everything you are going through at the moment.
I echo all that Norman has said above and hope that you are being surrounded by lots of warmth and love.
I have only just come across these messages from last year. Thank you so much for replying to me, it means a lot.
I'm so sorry, i have only just come across these messages. Thankyou for taking the time to reply to me. How are you doing?
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