Still waiting!

I did have a look at NICE last week but it was on my phone and not very clear, so I’ll have to try again on a computer maybe. Thanks for the suggestion! 
And I agree, I think the waiting is the worst bit isn’t it? It is reassuring to know I’m not alone in this bit. So nice to hear from people who are in the same boat- although I wish none of us were obviously!! Thanks again! And yes, likewise, keep in touch! We can help each other through it xx

Hi Mmum, apparently the health board here don't "do" kidney cancer - I've heard of someone else in this area who was treated in the Royal Free - successfully I might add. It is a one hell of a long way though.  My eldest son lives in London though, so my husband can stay with him, which will be handy for visiting.  What you say about Covid, looks like things are improving - but cancer and suspected cancer has priority - so they shouldn't be throwing that as an excuse to you. I do hope you get a satisfactory resolution - it's wrong that we're being messed around - we are very vulnerable and the last thing we need is to be "managing" our journey through the healthcare system.  Sorry for the rant, sending you love - Carolx 

Hi Carol, feel free to rant! I end up ranting about this stuff all the time, I think it’s so important for us to get it all out! 
And I guess I can understand being referred to another hospital for specialist treatment, but like you said, it’s SO far away from home for you, it’s tough! Not only do you have your surgery to plan for but you have the distance as well! I’m sorry for that! 

And yes, it’s a strange one for me because I’m also a nurse in the same Trust that I’m a patient at. So I know the covid situation and it just seems like an excuse that people give out so easily these days. I’m distancing myself from seeing patients currently as I’m worried I’ll end up getting covid and having to have my surgery postponed!! 

I just want it over and done with, as I’m sure we all do! I hope we both get some answers asap! 
Jess xx

Hello Jess,m it was lovely to hear back from you.Yes I had my biopsy on Monday. I now have to wait for up to four weeks as they also have to have an MDT meeting to let me know the treatment plan. It’s the waiting that causes me the angst, but I am trying to get on with life, one day at a time. 
Let me know how you are doing if you get the chance……..we will get through this  xx

Hi Jess, yes, that's the natural worry isn't it - the longer the wait the more time and opportunity the pest has to grow.  Although my oncology team were prepared to give me several weeks to think about my treatment options so perhaps they have a hunch, even from a single scan, the timeframe the critical events need to happen by.    I have to agree that 4 months is too long for a nephrectomy.  

I started combined immunotherapy (nivolumab, ipilimumab) on Weds - a day late because they ran out of ipi so had to send for a top-up from Edinburgh.  Don't know whether to laugh or cry!    Went fine.  Really pleased with it.  No side effects.  Of course, now I am examining every different or odd experience and wondering whether my body is reacting well to the drugs and doing its job to attack the visitors. 

Still trying to update my will and due to tell the kids (17 & 20) this week.   Last exam is tmrw for my youngest, hence the trigger.  

Take care,   Claire xx

Hello Jess,

my tactic for my partner over the last eight years since this began, is for me to phone once a week when treatment is needed - the cancer specialist nurses or the surgeon's secretary and politely ask what is happening.

It gets results.

It does however feel uncomfortable if you're shy like me but persistence pays. He has had three surgeries since 2013, chasing, letter writing, emails and phone calls required for every single one. He has a CT scan tomorrow in order for surgery to be booked in the next month for an adrenalectomy.

I have had to chase up every surveillance CT scan, it feels like a full time job :-) but it gets results. Good luck. 

Hi all, another update: have a consultation at the Royal Free next week - enquired with my local health board about transport & was told that my husband would not be able to accompany me!  So we're going under our own steam (cheapest train fare was £211) and will stay the night in a hotel. So, here I am, wondering how it will all go and trying not to over-think everything. Hope you are all keeping as well as you can be - lots of lovexx

Hi Jules, 

sorry for the delayed reply, how did your biopsy go? Hope you're feeling okay! The waiting is soooo difficult! I hope you're finding ways to keep yourself busy and occupied! At least you're over one week down now, plus January is out of the way so hopefully spring is on its way soon to make things seem brighter too! :) 

I'm doing okay, also struggling to wait for my surgery, they seem to keep moving the goal post, initially it was 2-3 months, then it was 3-4 months and now it's 4 months! Just hoping it doesn't change again! 

It's a frustrating system because it just doesn't feel like anyone cares, everyone I speak to is so emotionless! It doesn't make sense! 

Trying to keep myself busy with work and seeing friends and focusing on using this time pre-surgery to try and lsoe some weight! 

Sending love! :) xx 

Hi CeeJay,

Thanks for reaching out, I really appreciate the advice. Being a nurse myself I have to make a lot of phone calls and discussions with teams and I'm fine, but when it comes to advocating for myself I really struggle  and just find myself backing down and/or crying, haha. 

I tried to email my specialist nurse who initially said it was fine to email me, then he decided it wasn't and decided to be sassy with me. And the secretary I rang with regards to dates was the most emotionless person I've ever met! She couldn't tell me anything about when I might have my surgery, but said when i do get the call for my date it'll then be within 1 or 2 weeks! 

I think my main thing is that I feel like no one cares, and that's tough! 

I hope your partner is doing okay, it sounds like you've both had an incredibly tough few years! I hope his scan went okay! 

thanks :) 

Hi Claire, sorry for the delay. Yes, I think you're right, I think I'm just finding it difficult to put my trust in anyone at the moment. I think it's just that everyone told me it was so unlikely that this mass would be anything to worry about given my age, so to then be told that it's highly likely my mass is malignant but not to worry about it growing or spreading is difficult. I am trying to just accept it and carry on living - as difficult as it is at times. 

How is your treatment going? Are you getting on okay with it? I think it's completely normal to end up over-analysing everything your body does when going through something like this, i think it makes it really difficult to trust your own body, but maybe that's just me. 

How did you get on with talking to your kids? I hope it went well! I am currently single and no kids so in some ways I guess that makes it easier on my side, but can also be quite lonely. 

Sending love, Jess xx