About Me

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I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..

Tuesday, 10 May 2011

Back at work.......

I've been back at work now since 26th April. I'm doing a phased return - at the moment just 4 hours a day 3 days a week and although I thought I'd be able to 'up' my hours quite quickly, I realised after the first 2 weeks that I need to pace myself.

I was going to try to increase my hours this week to 5 hours per day but after a meeting with my Office manager she convinced me to stick to the 4 hrs for now - and to be honest she's right. I'm feeling uncomfortable sitting upright for long periods, I'm way more tired than I thought I'd be after working just a few hours - but at least I'm back in the land of 'normal' once again.

Today we discussed getting me a cushion or back rest to support my lower back whilst sitting. I'm going to look into this tomorrow as this dull ache is really draining. The achy pain is in the original tumour site - it could well be scar tissue, it could also be because the bloody wound still hasn't healed or it could be something more sinister.
Right now I don't have the answers - so I'll get a cushion support organised and see how it goes.

Not long now until my 'chat' with the colorectal nurses when I have my check up in June.

I've been trying to find out what the 'standard' post op care plan is for colorectal cancer. What I've discovered is that there is no 'standard' post op care plan - it varies from region to region.

The charity 'Beating Bowel Cancer' gave me some advice about probable reasons for not scanning me for 12 to 18 months after surgery....... Basically it's because they don't want to subject me to further Radiation haha bloody ha....
I kinda think that the original treatment - that burned me so badly - would have already caused any future problems and it's unlikely that a scan is now going to do more damage than what has already been done.
Today I found out that a cyber friend who had the same op as me in December (a month after my op) has already had a check up scan. Mine is another 6 months away as things stand at the moment.

I can't feel 'clear' of this until I've got some proof. So although I'm moving on by returning to work, I'm not really moving on at all - if you understand what I mean.

Heyho...the fight goes on........

PS. If you've had colorectal cancer I'm really interested in hearing about your post op care. How long after surgery was your first / second scans etc and any other info.


  1. Hi Carole

    Don't forget those hours mean 12 hours a week extra on top of the stuff you are already doing - and 12 hours a week less time to rest and recuperate. So take it slowly, no rush.

    I would feel exhausted if I was working 12 hours, I'm only managing 7 (probably nearer 10 when I add in the travelling).

    At my heppy clinic T asked the doc about fatigue and he was not at all surprised that I'm not up to full speed yet. Don't forget, he said, you had surgery, you had cancer. In between the lines he was pretty much saying 'this is normal, this is what to expect'.

    Your pain thing though, it would be good to get to the bottom (ha ha) of that. I've been told mine is most likely nerve damage from the surgery. But mine is a sharp pain, not a dull ache like yours.

  2. Hi Carole,

    Welldone for listening to your body and great that your boss is telling you what's best!

    As you know my after op care was as follows:
    Lower Anterior Resection Op Jan 10
    CEA Blood test every 3 months
    CT scan Mar10 - Due to complications
    CT Scan Oct10 - Standard post surgery scan

    Therefore I was told I would have blood tests every 3 months and a CT scan at 9 months post surgery.

    If nothing is found at 9mth standard test I would have a yearly review with care team.

    I would definitely push for a scan especially as you couldn't have the full 'standard' chemo and RT and should be at higher risk of re-occurence. At minimum you should have a close monitoring programme, although it doesn't feel as if you even have a standard monitoring programme

    I am sure we are on the same track as we have spoken on the same subject a few times...

    T xx

  3. I'm sure the school admin work fits in well with home life, enabling you to be around all the time DJ is at home.

    I think your talents are wasted though. I think you would make a brilliant Citizens Advocate. No idea how you become one though!

    Just my humble opinion, lol.

  4. Fiona, you are absolutely right. Carole would make a fantastic advocate. Now all we need to do is find something suitable for her!

    Carole, I would have expected one of my staff who had been off as long as you have to have their return phased over 12 weeks. Don't forget that whilst you might only work 3 days a week, those days are 'full-time', so don't expect to get back to 'normal' at work before the end of this term!

  5. That's complete rubbish about the scan. Yes, a CT scan is around the equivalent of 500 normal xrays but the odd couple won't do you any damage. I had 2 within a week once. I'd have expected better follow up from KCH, given it's a major teaching hospital and tertiary referral centre.

    The low back ache could be partly due to the midline incision and losing some of the strength in your abdominal muscles. I get severe pain if I stand for longer than about half an hour, the joy of 4 full midline incisions! It might also be worth talking to the GP about trying a low dose of amytriptaline or gabapebtin as they can be really helpful, especially if there's some nerve involvement.

  6. Hi Fiona,

    I'm sticking to the 4 hrs a day again next week. Again was going to increase next week but am way too tired and achy to do this yet.
    I realised today that every joint in my body is achy. As much as I want to get back properly to working normal hours, I physically can't do this yet.
    And yes, it would be good to get to the bottom (lol) of the achy pain in the arse :-)

    Thanks for confirming your after care plan, I'm gathering my stats ready in advance for the next stage of my 'recovery' plan :-)
    As you know I didn't have a CEA done after surgery so a catch up chat in June *isn't* enough to put my mind at ease, not by a long shot.

  7. Hey Lou :-)

    I'll have to get back to my 'normal' hours sooner rather than later - if nothing else for financial reasons. However, I won't be daft about it and I won't put my recovery at risk.

    H and the girls at work have been great - they've made me realise that I *do* have to do this slowly and it's not a problem for them - even if it does take me longer than I initially expected.
    I really feel for people who go back to work and are expected to be fully recovered before they actually are.
    I'm so lucky :-)

    As for the Advocate role - yes, find me one :-))
    Catch up soon hun xxxx

  8. Hi Sue,

    Thanks for your thoughts on the scan - which match mine entirely.
    To be fair to KCH it's not them telling me this (about the excessive Radiation) however I'm not settling for a chat and no more in June.
    I feel I need something more to work with at the moment.

    I haven't got a midline incision as my surgery was all keyhole & has all healed really well - so think the achy is not down to that.
    I'm pondering on it being scar tissue or maybe just the 'healing' (or in my case 'non-healing') process of the rectal wound.
    Standing is more comfortable than sitting right now, so I'm making sure that I regularly get up and move around - which does seem to take the pressure off the achy area.

    Have to say that I did expect more in the way of check ups from KCH - even a blood test 3 months post surgery would have been something.

    I will have another chat to my GP but he was reluctant to decide what is causing the ache and is therefore hesitant to prescribe something to ease it.
    My GP surgery have taken over my care without having full details - no pathology reports etc and again I feel let down by this.

    But, in the meantime, life goes on :-)

  9. Carole - I just spent ages writing you a long and wise comment, but the bloody thing disappeared somewhere! I think there's something wrong with my computer.

    So instead of typing it all out again, because actually it was saying what everyone else has been saying - (except that mine was in Geordie - 'Howay lass, give yersel a birra time man') I will send you a great big hug because it sounds like you could do with one.

    Much Love

    Shents xxxxxxxxxx

  10. Hi Carole,
    Good to see you getting back to some form of normality but please listen to the good advice you have been given and take it easy. Your Office Manager seems to be good and understands the situation which must be a great help. As you know I went back early to my work and I admit it was a mistake. I tried to bury myself in work and it backfired, not so much physically but I went though a bad spell about a month ago as my head was all over the place so be well warned. Do whatever you can to make it as smooth and gentle and pain free transition as it possibly can. I healed quickly but still had a cushion that I took to my work up to a week or so ago as it just made it that bit more comfortable when sitting for a period. It was just a cheap thing I got from Argos which had a hole in it but it was great. (note the hole was supposed to be there:) )
    On the scan I had my first CT scan 3 weeks ago aftermthe mid December op. I have also been given an appointment with my surgeons clinic in June. I do not know when there will be another scan although they did speak about ultrasound scans being done regularly at my local health Centre but no time scale yet. I am still by the way waiting for blood results. They have misplaced two of them apparently so they are trying to find where they may have been put. Time will tell.
    I hope the pain and discomfort starts to ease for you a bit Carole as you have really been through the mill with all of this. Take your time so that you are always taking steps forwards and not any backwards. Thinking of you always. Take care girl.


  11. I think you are brave to go back to work after what you have been through both physically and mentally. I have been off work now for 18 months, had no illness but feel I will have to boast my energy with vitamin drink for the first two weeks to get into the swing again.
    As for the after care, pheww! I will not rest until I hear you have a scan set up as all our body clocks are ticking and you need peace of mind to help with your recovery.
    Good luck with pushing them, hopefully you can get some good advice on what you are entitled to.
    Siga siga (slowly slowly) with the work schedule. I'm sure they are happy you are still with us and not even thinking about trying to push you to work your life away. They are used to you being away now so any help will be appreciated. You'll be back to yourself when your body is ready, not before then, Hugs and kisses, lit sis xxxxx

  12. My Dad was DX in October 2009 with Stage 3B colorectal cancer. They started with radiation. 2 surgeries (one to remove his colostomy bag). Then 6 months of chemo. He has been finished chemo since September 2010. He goes every 3 months for BW, then every 6 months for a CT scan and Chest xray. Then once a year for a colonoscopy. He has suffered some neuropathy in his hands and feet from the chemo and is still quite tired.

    That's amazing your back at work. Your story is very inspiring. Stay strong.



  13. Grrr! to Blogger...I answered your posts and since it crashed for the past two days it's now deleted my stuff...

    I will be responding later after sorting bedtime for someone who thinks he's able to do his own thing 'because it's the weekend tomorrow'...
    LOL, sorry Dj *doesn't* work like that here :-)

    For now, thanks for the replies - be back later x

  14. A couple of my posts disappeared off my blog, Carole but they've appeared again - so maybe yours will too!


  15. Dear Carole,
    I'm sorry to hear about your shoulder pains in addition to everything else. I don't know if you have access to a good massage therapist or not, but if you could find one who is used to working with injuries, they might be able to help your shoulder. I wish I was closer, I'd try and help you myself.
    My mom had severe pains in her shoulders after her mastectomy 20+ years ago. The position they had put her arms in during her surgery caused her shoulders to lock up. She could only move her arms six inches up or to the side and even that hurt. The doctors sent her to physical therapy and gave her cortisone shots. When those didn't work they told her they were going to do surgery on her shoulders and scrape away some bone.
    Fortunately, my mom decided she wasn't letting the doctors go anywhere near her shoulders. A friend told her about a massage therapist she knew. In 45 minutes my mom was able to move her arms to shoulder height pain free. It took a couple more times with the massage therapist before she regained her full range of motion. I'm hoping you might be able to find someone similar for you. They might even be able to help you with your back pains. I would also recommend that they teach a family member or friend how to work on you. That will give you some additional resources for relief if it does help.
    Sincerely, Carla