CCR appointment (cancer care review)

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So I had my CCR at my local doctors on Friday. 

With a guy called Craig, asking how I've been since being diagnosed etc, how I'm doing financially, how I'm doing mentally etc etc. 

Said fine on all counts really. Finances were not that much of an issue, as for the 6 weeks I got company sick pay and SSP so was only losing about 50 quid a week take home off my normal wages. I'm lucky in that I earn a decent wage being a lorry driver. 

I am probably around 1000 pounds less than I would have earnt all told with some loss of earnings and the first 3 days being on sick we don't get any pay for. But I've used up all bar 1 week of company sick pay this time alone. That resets in January unless I have to have time off and the company may decide to pay it for longer than the 7 weeks at their discretion.

Said he was happy with my take on things and my outlook with things, I'm lucky compared to a lot on here with just the one non invasive tumour and small and caught very early. Quick action by the doctors and hospital and all removed as I've posted about before. 

I can't do much about it other than try and be healthier and if it comes back or more come in different places then say lavvy, it's just a waiting game. Asked about any urinary issues or unusual issues etc. 

I'm back at work and just cracking on with life and see what happens in the long run. I did ask the consultant about chances of reocurrance and forget what he said percentage wise, but seemed to think my prognosis was reasonably good. But yet I'm going to be on surveillance for the rest of my life. 

Then Craig said after reading all my notes that the consultant and doctors had put, when I asked again that he seemed to think they seem to be expecting reoccurrence to be slim or whatever words he used. 

I know they can't give you any real useful info on how likely it is to come back, but that actually made me feel rather lucky to hear those words. But again I'm also not going to pin my hopes on it never coming back or even getting worse if it comes back. 

I have done a lot of research and looked into all eventualities and am as prepared as I can be for anything in the future. I just like to be as prepared as I can be. 

So all in all a good chat, I also suggested that I don't think that Linda the cancer champion should be ringing me every month for a follow up, there are people in much worse situations that could really do with the service more than me, so when she contacts me for the next one I'm going to suggest a less frequent follow up call in my case, I don't want to be taking up valuable time when at the moment I'm fine and nothing currently to worry about. 

I can't fault my team of doctors and surgeons and care guys and gals, they really have worked wonders with me, maybe I'm lucky in the area I live in but it's been mostly first class. 

I also know not everyone is that lucky and for those who are going through much worse I take my hat off to you all and hope for something much positivity for you all. 

So yeah just an update on how things were again after my op and stent problems etc. 

I feel back to my normal self now and just getting on with stuff as per normal bar the surveillance and cystoscopy's to come, the first one in 3 months post TURBT, so that will likely be in early Dec. 

I am also at risk of heriditary bowel cancer on my dads side, he died at 54 and one his brothers much much younger. It affects all the family on my dad's side sadly male and female, all we actually know is there is some genetic anonmoly in the bowel but that is as much as we know. 

So I also asked about how often I should be getting checked to that now I finally brought it up as before I just didn't want to know. He said do a fit test every 2 years and just keep an eye on any bowel habit changes. 

  • A bit long winded as usual but I think some positive stories can be nice for people to read about, on forums people often only post the more negative stories for obvious reasons. 

    Just I hope my story can give people some hope that it's not always the worst scenario, I do know that bladder and bowel cancer are 2 of the easier treated cancers if caught early. 

    ________________

    My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all Joy

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • Hi Simc,

    Thanks for your post, seems like all is going well for you and it's really good that they're following up with you.

    I've personally not had or even heard of a ccr, probably because I'm in for a biopsy every three months, so doesn't make much sense someone following up with me at the moment.

    It's also great to hear you're back to your normal self.

    Take care.

    Trevor 

  • I was a little surprised with the CCR appointment and the the bfollow up phone calls myself tbh. 

    ________________

    My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all Joy

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • Hi Simc,I haven’t heard of a ccr but it’s a good idea.I never had any medical support it does vary depending on where you live I think.Thanks for posting,I’m glad you are getting on with life and feel well.Best wishes Jane x

  • Sorry I just presumed it was part of what goes on once diagnosed with cancer, but it seems it's not a universal experience 

    It's all taken me aback quite a bit to think that people on other areas are not getting this sort of support if I'm honest.

    I do know our hospital has a Macmillan centre and also Macmillan are on the teams at the hospital, it's the Chesterfield Royal hospital, I remember a conversation on the phone for something and it was answered Macmillan, and I was confused and she went are Macmillan but we also work at the hospital for admin or whatever it was I was ringing up for at the time. 

    Again I just assumed that is probably normal at hospitals but also considering the fact it might not universally normal as well.

    I really am learning a lot even still now thanks to all the amazing people on here and the teams that have and are continuing to look after me. 

    To be truthful I expected the response to be well it's been removed so carry on and hope we don't see you again, I didn't expect any sort of support like this.

    And I find it difficult that people in much worse situations than myself might but be getting this sort of support, it really continues to make me feel like more of a fraud for being so lucky with how everything has gone. 

    But lots of you on here showed me so much care and compassion it actually has restored my faith in humanity, there are a lot of decent people still in the world, granted we have something that is frankly horrible no matter how small or serious people's situations but it brings people closer even albeit online in a forum.

    Goodness me you lot are turning me into a right soppy old git (yes I'm old maybe not as old as many but I'm old Joy).

    But again from the bottom of my heart thank you all.

    ________________

    My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all Joy

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • Firstly, I’m so glad that you have some positive news Simon! That’s great to hear and thank you for sharing :) 

    With the support stuff, I had a text from my doctors saying they wanted to invite me in for a conversation with the support nurse to discuss my diagnosis, and asked me to complete a questionnaire. I’ve done the questionnaire and not sure whether I’m supposed to make the appointment or if they’ll get back in touch with me. To be honest, I’m not that bothered about seeing them anyway. Not that I don’t appreciate their support, but I’ve got loads of support from various places (hospital, CNS, here, Fight Bladder Cancer group on Facebook, family, colleagues etc) and part of me dreads yet another conversation about what’s wrong with me, if that makes sense? 

  • Hi Simon

    Thanks for posting your good news, its always great to hear positive news. Like you I feel very lucky to have the support being offered when diagnosed. I assumed everyone got the same, but sadly thats not the case.

    When i was diagnosed I was blown away with the support offered. macmillan called me at home, discussed a full needs assessment including financial , emotional and practical help offered. I feel like I have had a first class service and tbh feel a little guilty that others haven't been offered the same . I think it is a post code lottery. The cancer care champion is attached to the GP service and I actually declined that offer of help because I feel i am getting plenty , and someone else could use it more. I am so grateful and feel the need to give back at somepoint.

    Really happy for you Si 

    Much love Angela x

  • Hi Angela,It’s good to hear that you have support.We had a cancer nurse at the health centre but apart from a letter I never heard from her.I had surgery in Bristol.I can’t fault them as a nurse phoned me weekly for the first few weeks after discharge.It was really the lack of care or concern from the health centre that was the problem.It’s no better now 5 yrs on and I can’t wait to move and hopefully find a more caring practice.I didn’t see a gp there until 2 years after the surgery and only had a couple of phone calls during that time.I found it all very lonely I would have loved to have had the Macmillan nurse to talk to.I did have lots of support from this group though and that helped me through the recovery.Love Jane xx

  • hi Jane , i can fully understand you wanting to move practice. All that you have been through and hardly any contact,its just not good enough .You are a strong woman to have got through all of that and caring for your mum too.

    I think the macmillan nurse being attached to the urology department at my local hospital has made a huge difference to my care. Its really sad not everyone gets it. 

    Much love Angela x

  • What upset me the most was the gp on the phone saying what is all this rubbish about you having cancer (her exact words) she was looking at the wrong scan.When she looked at the right one it was oh you do have cancer,she was so rude.They never received the discharge notes from Bristol.I had to take my copy round there so they could scan it into the system.It was a nightmare just getting them to agree to remove the stitches as Bristol had requested.xx