Limbo Land

  • 9 replies
  • 131 subscribers
  • 451 views

Hi there, this is my first post. My partner of 18 years was told he had a rectal tumour following a colonoscopy two weeks ago. He is only 43 but has had on and off symptoms for years, but the GPs always pushed back on further investigation despite his grandfather passing away from bowel cancer in his early 50s. 

So far he has had an MRI and CT scan, both done last Friday morning, so now we’re awaiting the results. We’ve been given an appointment with a colorectal general surgeon on 28th September where I assume we will be told the staging and plan.

The longer it goes on the more I feel like we’re putting ourselves in a false sense of security, and that if things were really bad then everyone would be moving faster. Apart from still having uncomfortable tummy issues and lots of bleeding, he’s not feeling too bad and has his appetite. 

It’s hard to be hopeful and positive without getting our hopes up, if that makes sense, as we know there are likely still tough times to come. 

We were due to go to Spain next week with our two children, 1 and 4, however our insurance won’t cover my partner now. We’re looking at other options for cover, but we can’t be covered until we know if the cancer is terminal or not. I’m going to try and phone the surgeon’s secretary tomorrow and see if we can get confirmation that it is safe to travel as I think the sun and swimming would really help my partner mentally before he starts treatment. 

Anyway, just looking to see if anyone has been in a similar situation both with travel and the false sense of security feeling during this limbo period. 

Thanks x 

  • Hi Joey, 

    Your properly caught between a hard space and a dilemma. 

    If your OH feels generally ok, check with the oncology team then shop around for insurance for him. If you can afford it then go. It'll make the treatment easier to take. Plan your next trip. 

    Others on Macmillan may be able to suggest companies. Or check other support sites for specialist insurance. 

    Good luck 

  • Thanks for your reply   - a hard place and a dilemma is it exactly! I'm hoping to try and get medical confirmation from someone tomorrow to say they are ok with him going away. Someone has also suggested Good to Go to us, so will have a look at them too. 

  • Hi  ,

    Has your insurer definitely said they won't cover?  It's  unusual for them to do that if all medical conditions were declared when taking the policy out and this is a newly diagnosed condition.  I was covered by mine and I know several other friends have been on holidays on their existing insurance after diagnosis.  I'd double check the wording of the policy as insurance companies can be a bit naughty when trying to find reasons not to even take the risk of needing to pay out.

    The limbo period is horrible (I'm in it again now waiting to find out if the 'something' on my liver is scar tissue or the return of the cancer).  It does take a long time, in my local area the results of scans are taking between 4 and 6 weeks to come back (South Wales).

    Definitely check with the team before traveling, but I would hope they'll say it's a good idea.  Then go off and enjoy yourselves.

    It will all feel better once you have a plan in place.  The limbo is the worst of the worst.

    Wishing you all the best

    CerysM

  • Hi  and a warm welcome to the board. Yes a holiday before his treatment starts would be lovely. I had rectal cancer back in 2016 and went on holiday after my 5 weeks chemoradiotherapy. I think I googled travel insurance for cancer and it brought up a sort of compare the market site which I completed then it brought up the quotes - I think I went with Insurewith? There is a forum board for travel insurance on here that you might like to look at?

     Travel insurance forum for cancer patients 

    I think it’s good to try and keep in a positive state of mind during things (although a lot of people hate the ‘p’ word!) Bowel cancer is very treatable and although I was stage 3 when diagnosed, they told me that they were treating me with a ‘view to cure’. 

    Once you have a treatment plan in place then things will honestly feel a bit better so please let us know how you get on?

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Cerys, thank you for your message though I’m so sorry to hear you’re currently in limbo as well, and not for the first time. 

    the issue with our current insurance is that we took the policy out after the referral had been made for the colonoscopy. My partner had had issues on and off for so long we never thought it could be cancer, and the GP even said to him, ‘I don’t think it’s cancer.’

    we thought it might just be safer to get new insurance for him that we know 100% covers him. 

  • Hi everyone again, and thank you all so much for your warm welcome and advice so far. We went ahead with the holiday and managed to have a lovely time. 

    My partner has his first appointment with his surgeon tomorrow morning first thing where I assume we’ll get the results from the MRI  and CT two weeks ago. I just wondered if anyone had any advice for what we can expect tomorrow? 

    We’re both absolutely dreading it but trying to be hopeful without getting our hopes up. 

  • Hi  and good to hear that you’ve had a lovely holiday. 
    At my first appointment they told me the results from the scans and what my treatment would be. I asked if they could cure me and they said they were ‘treating me with a view to cure’ which was reassuring and something positive that I could tell my family.

    Theres a lot of information to take in so take a pen and paper with any questions that you might have and to make a few notes, I met with my colorectal support nurse straight after and she made sure that I understood everything - she also gave me the booklet below which you might like to have a look at?

    https://bcuk.adidocdn.dev/Publications/Bowel_Cancer_UK_Your_Pathway_V10.1.pdf

    Please come back and let us know how it goes? x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thank you so much for your message  We had our meeting with the surgeon this morning. It was the worst news. They have put him at stage 4 with significant spread to his liver and lungs. Surgery not an option, straight to chemo. Have an oncologist appointment next. They said it can’t be cured. Our children are so small, I can’t bear this for them. 

    I am so lost.

  • Oh  I’m so sorry it wasn’t better news but please don’t give up hope - it might not be curable but there are people who’ve had a good response to chemo and are living with cancer for many years. There’s lots of information and a stage 4 board on the Bowel Cancer UK board and also some success stories

    https://www.bowelcanceruk.org.uk/about-bowel-cancer/advanced-bowel-cancer/

    Please reach out for help and support - the support desk is available every day for you to talk to someone and your local hospital may have a Maggies centre? 
    Chemo can be tough both mentally and physically but try and remember to look after yourself too so you’re in the best place to support your loved ones.

    Sending you a big virtual hug

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm