Nephrostomy awaiting appointment with urology

Hi Mjhennes and welcome to our group.

You’ve had a very difficult diagnosis and a lot to deal with, and it’s not surprising that your mental health is suffering. The lack of information you’ve been given must be particularly hard, and I’m really sorry to read what you’re going through. 

I haven’t had experience of a nephrostomy myself, but when my cancer recurred it spread over my bladder amongst other things, and my bladder was removed as part of total pelvic exenteration surgery. I have a permanent urostomy, in addition to a permanent colostomy, so I do understand what it’s like to have bags, and the stress they can bring. 

Everything for me which was related to my bladder was handled by my urologist, who was also part of my 3 person surgical team, so I hope you can get an appointment very soon with yours. I’ve found it better to be discussing things with a urologist rather than a gynaecologist as this is their specialism. Currently it looks like you’ve been left in the dark to a large extent, and that really isn’t acceptable. I would expect the urologist to be able to answer your questions about the nephrostomy, but also to be liaising with your gynaecologist moving forward. For example will it be possible to have the nephrostomy removed at a later date, or will it be permanent. It’s certainly very concerning that you feel that some information fed back to you has been incorrect. 

The wait for the post treatment scan and results seems endless, but is normal. Radiotherapy continues to work in the body after treatment ends, and the wait for a scan is to give time for any inflammation and treatment side effects to improve to give a better picture of how things are. I’m assuming you are continuing with immunotherapy still? 

Perhaps you could consider asking for some help and support with your mental health? Sadly I found this to be lacking when I had my surgery and it took me a long time to ask for help when my own mental health spiralled, but when I did, it did help. I’m not sure why medical professionals dealing with our physical health do not seem to comprehend the massive effect cancer and its treatments have on our mental health. In addition, you have surgical menopause to deal with. I was “lucky” in that I was post menopausal when I was diagnosed, so this didn’t affect me, but you might need some extra help to deal with this too. I have found we need to speak up, and advocate for ourselves as much as we can to get the additional help we need. 

There was a very recent post from another member of our group who also has a stage 4 diagnosis, and I’ll tag her so she might see your post and be able to offer some support Helen0216

I’m glad you’ve joined us, and hope you will find it helpful to be here. Please keep posting, ask any questions, and there will be support here for you from others who can share their experiences.

Sarah xx

Morning, so sorry to hear what you are going through and so sorry you have been left in this situation without the support and care you deserve and are entitled to by the health professionals around you, its not ok.

I am unable to offer any advice re nephrostomy but i wanted to check that you had accessed advice and treatment for the menopause, as you mentioned these symptoms on top of everything else are also unsurprisingly adding to your mental health. I had chemoradiation and overnight experienced meno symptoms including night sweats, everyday in the late afternoon my face would also become drenched in sweat etc, i contacted my GP and requested HRT, they emailed my oncologist to double check the type prescribed was 'safest' and ive been on ostrogel and progesterone tablets since then and within days the sweats completely disappeared. I started taking them a few weeks after treatment ended so please dont wait for your 3 mth check, you are dealing with so much already this may take the edge off some of the other distressing experiences you are facing. I would also encourage you to contact your CNS and request urgent referral for counselling, my hospital had a very small psych oncology service and ive been lucky to access x 2 6 weekly sessions with that team. I know each nhs trust has differing resources/services but it might be a good place to start. Youve been through so much and struggling with all of this additional pain discomfort and stress im hoping with Sarahs advice too some of this may get easier for you. Sending you hugs 

Hello Mjhennes

My name is Lizzie, and I work here in the Online Community.

I’m so sorry to hear about everything you’re going through at the moment and how much you’re struggling with your mental health. I can only imagine how difficult things must feel for you right now.

I can see that SarahH21 and mochimoo have kindly taken the time to reply to your post, and I really hope their advice has helped, even just a little.

I know they’ve both mentioned speaking with your GP and cancer nurse specialist about how you’re feeling and the impact this is having on your mental health. I appreciate that reaching out for support can sometimes feel difficult, but you deserve to be heard and to have the right support in place to help you through this.

I also want to mention our Ask an Expert forum. If you have a question you’d like a professional to answer, simply head over to the correct forum group, and post your question by starting a new thread. A Macmillan professional will then aim to respond within 1 to 3 working days.

Please remember that alongside accessing support via the Online Community, the Macmillan Support Line teams are also here for you. Sometimes it can help to talk things through with someone who’s there to listen. They’re available 8am to 8pm, 7 days a week, on freephone 0808 808 00 00, by email, or via live webchat.

There are helplines available if you feel your situation worsens and you feel you're in need of urgent help:

• Samaritans have a line you can call at any time, every day of the week. Whatever you're going through, a Samaritan is available to face it with you. You can call them free on 116 123 (they are open 24 hours a day, 365 days a year).
• Mind is a UK-based mental health charity, which you can call on 0300 123 3393 or text 86463 for mental health support.

We would always recommend discussing how you are feeling with your GP or medical team. If you need help and it’s outside of your GP’s opening hours, please call the non-emergency NHS 111 on 111 for England and Scotland. NHS Direct Wales on 0845 46 47 if you are from Wales. If you’re in Northern Ireland, you can find details of an out of hours service. You can always call 999 in an emergency.

I hope this information is helpful. Please do let us know how you get on.

Thank you everyone for your responses. Currently I have an urology appointment in 2 weeks which I’m hoping will answer some of my questions. I am experiencing some anxiety due to some of the attitudes I’ve experienced from consultants (although some have been lovely). I’m at the point I feel I cant trust anything a consultant tells me unless I’ve fact checked it. I’ve been told quite a few things that were wrong, and medically gaslit on occasion.

I’m seeking mental health support privately (via work) as I’ve come to the conclusion it’s pointless via the hospital. I was referred urgently to the psychologist in my first week of treatment. A month later I had an appointment and sat by the phone for an hour and no one phoned. Apparently she needed to go home urgently. Another month later she left a voice mail saying we had an appointment (that I was never notified of) and to phone back if I still needed support. I get the NHS is struggling but the service is completely unfit for purpose.

I’ve started HRT which has helped a bit. I’ve also changed oncologists. The previous one has made some mistakes that has caused me considerable distress. When I explained about my menopause symptoms (unable to sleep for a week, crying constantly for 3 days) she responded by saying I was 44 and it was going to happen soon anyway. The GP, fortunately was able to help and was sympathetic to what I was going through.

Oh Mjhennes im so sorry to hear this, i remember thinking a few days ago after watching something on TV about the hippocratic oath, first do no harm and how they now need to really develop training for health professionals in regards to do no emotional harm too! i think lots of Health professionals are inherently compassionate and good at articulating that in those moments but those who are not (and no doubt under pressure with heavy stressful workloads) really need to be better trained in trauma informed practice. Both the psych and consultants actions and words take my breath away, im really sorry you experienced that.

Ill keep my fingers crossed for the appointment in 2 weeks and that the counselling via work is timely, empathic and more than 'good enough'.

Do you have any friends or family you feel emotionally safe with to have someone to hold you (emotionally or physically) when you feel distressed? have you ever called the helpline in those moments, having someone listen and understand even if just for a moment can provide some comfort. do you have things that you can do after a good cry that start to make you feel a wee bit better? im not sure if this helps but getting outside, headphones on and feeling sun/wind (more likely rain) and finding green/trees helps me - in these walks in the early days id do some much thinking and reflecting and processing what had been happening that day, that week - you are experiencing so much all the time, most of it not in your control, and a lot of it that has caused you distress and harm - taking sometime to acknowledge that can sometimes give you strength to face whats coming next, someone told me the 'this too shall pass' mantra and i adopted it as my own when things felt overwhelming, repeating it over and over. Im not sure if any of this helps but just want you to know that im thinking of you.

Just a thought on the trust thing, i hear you. I wonder if there is someone you trust who could go with you to your appointments, as an advocate for you in these moments? someone to take notes, ask questions and make sure you are feeling safe? if you dont have anyone it may be a good idea to let them know in advance you are feeling anxious and have lost trust, and ask them to respond to you in appointments in a manner that demonstrates that they understand that and will do all they can to reassure you. I know you have had some horrendous experiences, but you have also had some good, and i think most drs want to be the ones that provide their patients with the good experiences, and letting them know how your feeling and what you need from them may help 

Thank you for your response…much appreciated. 
unfortunately I don’t have anyone I feel comfortable taking to appointments etc. I’m widowed and not from the UK so no family here etc or local friend group. 
I’m generally ok advocating for myself. I’ve worked in the NHS so familiar in dealing with consultants etc, and have some medical training. That said there are things I’ve missed and I usually record sessions so I’m not constantly taking notes etc which is a big help. Xx

im sorry to hear of your loss Mjhennes and that you are in an adopted home. Please do keep reaching out on here there are always people around. I am really pleased to hear that you are ok with advocating for yourself and have familiar dealing with consultants and like your strategy re recording appointments (wished id thought of that!!!) im hopeful today is a kind and gentle one for you Mjhennes and ill be thinking of you

I'm so sorry to hear that you've felt medically gaslit. It must be incredibly upsetting and frustrating to feel that your concerns haven't been heard or taken seriously, especially when you're already navigating so much. You deserve to feel listened to, supported and treated with care.

Macmillan has information on how to access support if you are unhappy with the care that you received. You can access that here: If you are unhappy with your cancer care | Macmillan Cancer Support. I would also encourage you to speak to the Patient advice and liaison teams (PALs). They are there to address any concerns you have with your healthcare providers.

As I mentioned before we also have our Macmillan Support Line so please feel free to reach out about regarding your concerns. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00. If you would rather speak to them via message, you can also do so via live webchat or by email.

I hope this helps, and please do not hesitate to reach out again if needed.