Almost at the 5 year mark

Hi Ker25 ,

Welcome back & yes I remember your story. You also contributed in supporting others here for which we’re always grateful.

I think a lot of us here are living with somewhat of a legacy from this treatment. For me personally, following a few investigations over the last 3 years including MRI scans etc., it seems to have gifted me Greater Trochanteric Pain Syndrome & a whole load of inflammation in my lumbar spine. I’m currently back to square 1 & self referring back into physiotherapy! 

When I was discharged after my 5 years surveillance, I’ve talked about it on here previously, I expected to come out of that final appointment feeling elated & ready to go on a mammoth celebration but exactly the opposite happened. I felt flat & a whole load of nothingness really. I hadn’t seen my regular colorectal consultant at that final appointment as he’d been called away from clinic I think & was discharged by a registrar that I didn’t know & who didn’t know me so thought maybe some of how I was feeling was down to that but since I’ve heard others describe the same anticlimax. 

At that final appointment maybe ask your Dr what you should do if you have any concerns moving forward, hopefully they’ll say to give them a call, that way you’ll not feel completely abandoned or cut loose & you’ll have that safety net if you feel you need some reassurance. 

I think when people are through their treatment & recovery & no longer require support they rightly go off to get on with life & everyone presumes life is good but once you’ve had a cancer diagnosis or any other major health event for that matter I think our lives are changed forever in some respect, that can be physically or emotionally or both. For me yes there’s the physical issues but I’ve kind of come to terms with that & I’m doing all I can to eleviate those but also there’ll always be that little extra caution lurking in the back of my head concerning new ailments & what could be at the root cause, I think this is only natural. 

You've done amazingly well considering your original prognosis but I completely appreciate the way you’re feeling, it’s natural & that damn scanxiety never goes away does it? 

Nicola 

Hi Kerrie, I am 49 and only five months post treatment. I have found the menopause symptoms incredibly difficult and have opted to take HRT to smooth the edges. The aches in my body, sweats, mood swings has been worse than the treatment. I am using dilators, though hard to fit everything in around the kids! I was reccomended Sheology by Ms Nobbenhuis at Royal Marsden - you can wear them when watching TV! I really relate to your post, I thought I would feel elated post the all clear but it is super complex emotionally. 

Hear to chat any time and I agree our perimeni mates have NO clue!!!!!! Willow xxx

HI Kerrie, I remember you and thank you for your kind words.

I know exactly what you mean- my 5 year anniversary will be here in the spring. This past spring I saw my oncologist and my colorectal surgeon, and they both seemed awfully excited at the prospect of clearing me from their books!

I too thought I'd be excited, but I'm a little alarmed. So, no one checking up on me? Comparing scans? I've never even had a PET scan. How will I check for any new worry spots?

But I'm doing so much better. At almost 5 years I still take a lot of care in the morning to make sure I'm as emptied out as possible before leaving the house. Luckily I'm retired and can stay home most of the time if it's iffy.

I still have an accident here and there. It upsets me every time, but as my husband shrugs and says, it's bound to happen.

My bum is still very tender and I have to use the bidet or wet wipes. That's just life. It rarely hurts any more if I baby it enough, so I'm thrilled to be at this point.

The stenosis has resolved. I need to use my wand more (pelvic floor therapy) but I hate it so I don't much. Sex is awesome again. HUGE YAY! I can even ride my pony some!

So much thanks to Macmillan and all of you for seeing me through the worst of it.

Suz

 Suz, ridetbred 

Wonderful to hear from you again and that you are doing so well.  AND having awesome sex - I do (only in my dreams).

Keep well and enjoy life!

Irene xx

Hello Ker25 

I am really happy to see this post and thank you for returning to update us.  I didn't think for one minute that you were having a moan, this has always been a place where you can tell it like it is.  Quite a few of us compare notes about our various aches and pains because outside the forum, a lot of friends and family just don't understand.  We are all grateful to be here but for many of us we have a new normal that at times, we really struggle to cope with.

And those around us see us looking as we did before and think the whole cancer malarky is way behind us.  If only that were true; once given, a cancer diagnosis never leaves us and there is always that thought lurking; what if it comes back?  I never knew real fear until I heard the words from the consultant; it is all like a bad dream now but one that I remember with the utmost clarity.

But I hope the coming years are kind to you and you cope a little better in moving forward; you were so young (and still are!) and the whole episode must have been just awful for you and your young family.

So wishing you all the very best for the future and please don't be a stranger!

Big hug

Irene xx

So lovely of you to reply and so happy to hear you’re still doing well. I’ve just had a weekend in Milan which was lovely but awful at the same time, 

anxiety got the better of me at times and I had about 6 panic attacks, loads of loose stools and an almighty fear of what ifs. 

I don’t know if it’s the angst of upcoming scans but I feel my lose more control each time it’s pending. 

I will update again once I get my results in November. 

until then il probably be a hormonal mess

Hi Irene, lovely to see your still taking the time to read these messages. 
Coming back here has given me the courage to accept that I need to address my anxiety. I think until now I just keep pushing it away and ignoring the fact I’ve had cancer.

its like it never happened. But it did and it’s time I address it and stop putting on a brave face. 

I will update again after the 11th once I’ve seen my consultant. 

great to hear your doing well, keep it up. 

Big hug back 

Kerrie x

Hi Nicola 

thanks for the lovely reply.  and great to hear from you and your experience.

Every time I go back to the hospital I get the same fears, it takes me right back. 

the fear of being told it’s back is unbearable and hard to accept as a possibility. 
alongside that the fear that I don’t think I’d cope with anymore treatment as Im so anxious. 

im currently practice nursing which is great into be back in work but seeing ppl and hearing similar stories just brings it back everytime i see those words. 

obviously i have good and bad days with that though. i can’t quit being a nurse so need to find a way of dealing with it. 

I will be in touch when I get my results xx

Hi willow

thanks for the reply. 

i remember going through treatment and thinking id give anything to be post treatment and clear. Then when we get there we just have different hopes and thoughts. 

its gets easier in some ways and harder in others. I’d never experienced anxiety of any kind before, now it hits my for now obvious reason and has almost become irrational. 

menopause is shite, but HRT helps a little. 

it’s the not knowing what symptoms are what that’s the hardest to navigate, 

glad to heard you go through your treatment, hope the coming years are positive for you too.

love chatting it’s really helps xx

Kerry,  Ker25 

Please consider getting some help; like you I was stage IV at diagnosis and my doctor prescribed anti-depressants.  And they quietened the voices that were chattering in my head, day and night.  Like a gong, I have cancer, I have cancer.  But the anti-depressants helped calm me down, helped me sleep and I honestly don't think I could have done without them.  I came off them a long time ago.  The worry about cancer is always there but is under control.

I am not advocating that you should take pills, just that you recognise fully that you have gone through such a trauma at such a young age and have continued putting a brave face on - that is a huge strain in itself.  No wonder your thoughts are going haywire.  So again, please consider help, be it counselling (specifically for cancer, such as Maggie's if there is one near you), the Macmillan help-line or your GP.

And of course, remember you have your virtual cancer friends here on the forum!

Another huge hug

Irene xx