5 years ago upon diagnosis of OC, I had a full Hysterectomy and a round of paclitaxol and carboplatin, 3 years later had chemo again but didn't work, been gradually getting worse until May this year I tummy blew up and quite painful can't fit my jeans on anymore thought it was ascites only to have a scan and to be told it was a belly full of tumours. as I've only just 50, my oncologist has offered me an op, so very grateful but it's been so traumatic waiting for it, I appreciate the NHS are overworked and underpaid but I was given early july, then postponed another week, to with possible stoma being required I had to take picolax to clear bowels and follow low residue diet, completely understandable but being vegetarian left me only able to eat milk and cheese, so good job I'm not vegan... turned up gown and stockings on to be told surgeon got covid and cancelled, next date was early august, then the night before it got cancelled (shame I had already taken gruesome diet and picolax again) as now a liver expert wants to get involved... now i'm still waiting for date and I'm feeling worse, i'm worried it's going to be too late, by the time they get in there.
Because of the delay bearing in mind i've not taken any drugs for cancer since 13 June, as clearly tamoxifen wasn't working, nor letrozole or anastrozole taken previously, they've said i've got worse, (of course it is!) and i've been so worried and confused and upset I feel that I've been left and forgotten, although I have now rung my 'new' CNS who have assured me their working on the date.
Thing is now I am bleeding I can only assume with no womb or lady parts that it is the metastases of the peritoneal or tumours in tummy, not sure where it comes from but knickers are stained although not clear what it is until I 'wipe' after the loo (wee) - thing is, should I now tell them or are they likely to say it's too late now and they won't operate and I just have to accept this is my time to go now? I really don't want to but despite being positive, we're all so tested with this dreaded disease aren't we?
Thanks in anticipation
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Melnie
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Oh Melnie - my heart aches for you. The immense frustration you must feel; I was ready for my op, just like you, after that vicious Picolax, twice. The delays seem totally unacceptable to me. Have you been down the route of second opinions? Are you being treated at one of the centres of excellence? I’m sorry I have no real advice for you but I send you virtual hugs and strength to ‘fight your corner’, to get that op done. Please don’t give up. Know that everyone on this site is rooting for you.
Dear Melnie, how totally frustrating for you it just doesn't seem good enough, and yes the NHS is busy but this all seems totally unacceptable to me. Can you possibly get a second opinion and get things moving. Hate to say it but sometimes we have to make some noise to be heard l like you think we've been overlooked for the past 2 and a half years. Your going to have to be firm and say this just isnt right l need my treatment now. Start complaining l know none of us like to do that but in your situation its the only way. Hope & pray you get some help & get sorted quickly. Sending love & hugs SheilaFxxx
Im so sorry to read this! I think you should get back up from pals , being left this long is not acceptable, I eneded paying private for my debulking op and had to borrow the money off my dad! Wait til monday and ring oncologist and demand that they get a date. Take care x
This is absolutely disgusting to leave you waiting and waiting.I would contact PALS within the hospital and complain.You could also call your local MP office and get them involved.Or ask your GP to help and perhaps arrange a referral to another hospital for you.I would do all 3 of these things and see if you get anywhere.If you don’t feel up to it have you got a family member or close friend who could help you? I think you need to make as much noise and fuss as you can.
yes, you have every right to kick up a great big rumpus in the politest possible way. Don’t be shy to do it. Call your hospital’s PALS and as well Lodge a formal complaint, which is a stage higher than PALS. Plus Ask for a second opinion at a cancer centre of excellence. I guess you are going to have to tell. Them about the bleeding. That may hurry your op up. Big hug. Xx
I’m so sorry you’re facing these delays Melnie, it’s totally unacceptable. I don’t know where you are but the team at Birmingham City Hospital, where I had my operation. 2 yrs ago are a centre of excellence for gynae cancers. My second opinion was there and after referral was seen within 10 days. The surgeons are Miss Kavita Singh and Dr Janos Balega, Google them and the hospital.
When Letrozole stopped working for me I asked to try adding Zoladex or Lupron. My medical oncologist was sure it wouldn’t work but it has shrank my tumours and kept me stable, I had to really put my foot down with him!
ah that's good to know thank you, but yes I'm way down South so area not ideal - but maybe worth seeing if they allow travel? I'll see how I get on and hope that the bleeding although intermittent doesn't hinder the op - I'm so afraid they'll say oh that's it you're too far gone now
Melnie, I really feel for you having to wait for a date for your operation I am sure it is torture for you. I dont live in the Uk but for awhile I wasnt getting my Ct scans every 3 months over here because of backlogs due to covid. I was getting really anxious & when I had a soreness in my stomach it made me worry even more. When it was nearly 6months since I had a scan one of the nurses in the treatment room said to me "you know what your problem is you are too quiet, those that shout the loudest dont get left behind". She told me to email the patient support department of my hospital complaining about the delay for the scan. I did, saying how the delay was affecting me & that other patients should be treated just as equally as covid patients were. Would you believe I got my Ct scan done the following week in a private hospital on behalf of my hospital. I have already been given a date for my next Ct scan as well in my own hospital this time so my nurses advice definitely paid off & I have learned a valuable lesson not to stay quiet again because after all this is my life. Please contact your hospital, tell them about the bleeding & start fighting for your operation date, you deserve to be looked after just as much as the covid patients are & have been. Your life is precious too 💕Cancer unfortunately doesn't wait around for covid to be over so start shouting & stamping those feet.!!!!! Hugs X
Ah, thank you I'm sorry you've had all this to endure also but well done for shouting out.. it's so hard though as I guess some of that comes down to self worth and the fact that I feel cancer is a punishment for me for something or even in a previous life, I don't know how much I can shout when I also know how overworked they all are, all of that tears me apart x
Oh, Melnie My heart goes out to you. What you are going through is so difficult but the delays in surgery make it all unbearable. Your courage is admirable. I definitely would bring your journey to the attention of those managing the system through the means already suggested above. Perhaps in future there could be protected centres for very complex, time sensitive surgeries like yours which are not used for other emergencies, so surgeries keep moving promptly.
I appreciate your fears about the bleeding putting off the surgery you so desperately want. However, I do advise telling your clinical team as they need to know about the bleeding in order to diagnose what is causing it and then address it. I know it is the weekend and I am unsure of what out of hrs support exists in your area but if you have an out of hrs GP system could you discuss the bleeding with them. I am concerned about whether you might in the end need to go through A&E. This needs to be diagnosed properly. Please also check if your Cancer Centre, Ovacome or McMillan have any helpline open at weekends. You need some good advice from a Clinician and the opportunity to talk this all through in depth.
Thank you for your post. I’m so sorry to hear how worried, confused and upset you have been feeling. It sounds like it has been a very difficult time recently; I really hope that the support and experiences shared from the forum community have been helpful. The Ovacome support team are also here for you, so please don’t hesitate to get in touch if you would like to talk through anything. You can message us directly through this forum, email us via support@ovacome.org.uk or call our support line on 0800 008 7054. We’re here to provide support and information, Monday – Friday, 10am – 5pm.
As many forum members have suggested above, please do speak with a member of your clinical team about the bleeding you are experiencing. They should be able to provide you with personalised guidance - and advise whether any additional steps are needed to help manage this. You mentioned in your post that you have a CNS; I hope that they will be able to support you with this new symptom and provide some reassurance. In addition, as Mariej2021 suggests above, your GP or NHS 111 should also be able to assist you. If you would like any help preparing or planning for a conversation with a member of your clinical team, please do let us know.
Some forum members have spoken about the Patient Advice and Liaison Service (PALS) and this link provides details about what PALS may be able to do to help and how to contact your local service: nhs.uk/nhs-services/hospita.... I also wanted to let you know about the Patients Association, who are an independent patient charity campaigning for improvements in health and social care. Their support line is open weekdays between 9:30am – 5pm on 0800 345 7115. For more details about the support they provide, please visit: patients-association.org.uk/.
I hope this information is useful and that you have some clarity about your upcoming surgery date soon. Please let us know if there’s anything we can support you with at this time. Even if you don’t have a specific question, we offer a safe space to speak about anything that may be on your mind.
Yay I finally have an op date, 2 weeks from now, scary but relieved, I really hope they can do something and despite them covering themselves by saying we could open you up but if it looks too bad just shut me up again I really hope that although I know this is such a complex operation that they can actually do something for me, and the fact they've offered would mean the likely hood would be yes they could or it would waste resources and time if they couldn't. I wish you all the best just I with myself, it's so hard isn't it 'trying to stay positive' for so long, I just have to keep going... thank you all for your support x
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