Online support for mum

[doja-cat-uk]

Hello all! I've been recommended this forum through a friend who works in oncology. I'm looking for ways to support my mum who has stage 4 ovarian cancer.

In November last year mum was diagnosed with possible stage 3, suspected ovarian endometrium origin. Following 4 rounds of taxol and carboplatin she was operated on in January 2020. During the laparotomy the surgeon was unable to remove any of the mass because it had spread to part of her bowel and also blood vessels to her liver. Following this op she was home for a fortnight after she came out of hospital, then back in for pancreatitis (triggered by gallstones, gone unchecked following her cancer diagnosis). Sadly mum had several other hospital admissions towards the start of this year, which prevented further chemo. Then the world was struck down with the blasted coronavirus so treatment inevitably paused.

For the first 6 weeks of the lockdown mum was on letrazole tabs, she was bright and coping well but then their effectiveness ceased. She had another CT scan and the cancer had progressed, started back on chemo in June (caelyx and carboplatin) which reassured her to a degree but her post chemo symptoms are different to what she knew before. She often feels ill supported by her chemo team, even before the pandemic - she's never had a good relationship with her consultant, who is quite difficult. She used to speak to the registrar and got along with her better, but they've been moved along to a different team since the virus. Now when she has pre chemo phone consultations it's with various oncology medical professionals, as I'm sure staff are stretched in the NHS currently, so she's lacking any kind of consistency. She's doing her best to take all of this in her stride but I know she's suffering. I'm doing what I can to help but I think she would really benefit from talking to some ladies going through something similar. I forgot to mention her best friend has moved to the other side of the world temporarily which really hasn't helped!! I encourage her to talk to me as much as she feels she can, which I think she appreciates but I think her connecting with people (with shared experiences) would be good for her. My mum is 61, she's just had her third round of Caelyx and we are now waiting for more information about another scan.

Sorry this is probably very long and rambling, just trying to give as much info as possible. Mum has joined an online tai chi class which she's enjoying, I feel like maybe if there are online zoom groups she might benefit from this? I've shown her Ovacome, she's in the process of setting herself up on here too. I've also found a link to the Friday q&a sessions but anything else would be really appreciated.

Thanks so much for reading x

[delia2]

Hi. Welcome to this wonderfully supportive group. There are some other daughters on here too. I can’t help you much because I am in the States but it sounds like your mum’s experience has been rocky to say the least. I strongly suggest she get a second opinion and through that switch oncologists. It’s bad enough to have cancer without having to deal with an uncaring consultant. I’m wondering why they didn’t offer more carbo taxol when the surgery didn’t happen. Also there is a really good surgeon at Hammersmith that everyone talks about, Dr. Christina Foutopoulos —I may have the spelling wrong. Your mum could call Anna here at Ovacom for advice. Good luck with everything and thanks for being such a caring daughter!

[doja-cat-uk in reply to delia2]

Hi delia2 thanks for this, unfortunately we are not based in London and travel is still something mum isn't keen on due to still being a vulnerable person because of the virus. It was more online bits I was after rather than going down the second diagnosis route. There is a pinned post about this though, which I've sent over to her. I feel like she should have had one a while back! Thanks for your kind words and support.

[win_56]

I would agree with the previous comment from Delia2. I would immediately ask for a 2nd opinion from Professor Christina Fotopolou. She is at the Queen Charlotte Hospital Hammersmith. If you do not want to delay you can have a private for a consultation which will get things moving quickly and your oncologists can email your mom's scans across to Professors secretary.

[Lizzieanne in reply to win_56]

So sorry about your mum. Agree with others find an oncologist that you both feel comfortable with. Can you say what area you are in and ask for recommendations on here. Hate telephone consultation s luckily in Warwickshire have been able to have face to face consults and with my husband able to attend as well.

[SUE7777]

Hi doja-cat-uk, I don't know where you are based but I agree travelling to London is a scary prospect at the moment. Your Mums Consultant and your Mums opinion of the Consultant doesn't sound good and she really needs to trust in this person so I would recommend a change and maybe some homework beforehand to try and get a better one. As far as the team passing her from one to another this does happen, it has happened to me but as your Mum is 'new' to all this she could mention to the team that if possible some consistency would be really helpful if possible at this moment in time. Don't be afraid to ask don't ask don't get! Listen if you need any more advise don't hesitate to post again because there is a lot of experience and help on this website and the ladies are lovely. Take care and warm hug to your Mum. By the way Prof. Christina Fotopuolou is very highly thought of. Sue xx

[Lymbrae]

Hi doja-cat-uk

Becoming more actively involved with Ovacome & also Target Ovarian Cancer is very helpful. Both groups organise or provide info about online chats & workshops. I have found it really helpful to chat to others with OC - reduces the feeling of isolation & helps calibrate what to expect from consultants etc.

Macmillan also have an OC community.

Sounds like your mum has had a really rough time so far - hope that getti G connected with others will help her feel more supported.

[Cropcrop]

We’re all here ready when your mum joins us, we will also support you through all this. The OC diagnosis is difficult at the best of times, add the delights of Covid and it’s a double whammy.

Where is you mum based? I was treated at the Christie in Manchester which is a world leading centre of excellence in the treatment of and research into cancers.

I hope you both find some solace soon and get the support from an oncology team that you both need.

Stay safe and love to you both ❤️Xx Jane