Making decisions

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Hi, thanks you for reading this. My husband is in early remission from bowel cancer. He had a scan in November and they were happy there was no evidance of it. I am of course delighted, but the battle scars from the time we had during treatment and surgery get triggered. How do you live with a good mindset moving forward? I am finding decision making hard as in the back of my head there is always the fear of it returning. I suffer from a lot of "what ifs" which is impacting life choices.

How do people navigate this? 

  • Hi  and I see it's your first post on the community so welcome.

    During diagnosis and treatment all the family regularly load the invisible rucksacks you were all given at the start of the journey and as times goes on lots of 'stuff' gets thrown into the rucksacks and starts to weigh you down...... once the 'all clear' words are used lots of people hit 'the wall' of "what if's?"......."how do we get life back on track?"....... "Is there a life post treatment?" as these are now muddled in with everything else on your back and it gets very confusing and difficult to think clearly and see a clear road forward.

    I can only answer this based on my journey and prospective. I have been living and been treated for my very rare, incurable blood cancer for coming up to 24 years. I have relapsed multiple times but at the moment I am over 7 years out from my last treatment and just over 6 years in remission....... it took a year to confirm my remission...... so my 'getting on with life' is rather different and actually very clear..... 

    As a family we have lived with the knowledge that there were no certainties and more so when my cancer is incurable and can show it's face at any time so our simple focus is just like driving a car........ the future is open for you to see through the big wide front windscreen...... the past is only visible in the little mirrors........ if we concentrate on the little mirrors we miss the future and more importantly we crash.

    We get on and live life to the full, make plans for the future and enjoy them when they come round..... I have a few post treatment health 'left -overs" (see the link below to see my full story) but like most people, we all have some health issues so we just deal with them and move on again...... we have a clear view that we refuse to allow my cancer journey to define us....but we define how we live life..... as it's been a hard fight to get into this position.

    You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

    I said about the ruck-sack..... it needs to be emptied slowly. this can be done on this group. In the other groups you have also joined but talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

    Happy to chat more ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you for replying. I'm very moved by your response and I've read your story.  Upon reading I have to say, I kept asking myself how on earth have you and your family  mentally and physically come through everything thats been thrown at you but I guess that's the thing, you don't get a choice, only in our attitude.

    I shall endevour to look through the windscreen and not the little mirrors, i guess if we spend our time worrying what could happen we loose the opportunity of the good in that moment. I dont want cancer to shape our future, our decisions, but its just working out how we gain the confidence to move it to the small mirrors.

    Thank you and enjoy your continued planning for the future. 

  • When I was first diagnosed way back in 1999 we had a few very good friends also diagnosed with their type of cancer and a few with Parkinson’s and MS.

    The two male friends who had cancer are no longer with us…… I remember well when the 3 of us and our wives sat in our house with a few drams/red wine and chatted about our upcoming cancer journey.

    At the end of the night we all agreed that the last man (and wife) standing had to live their lives as full as they could and do this in a celebration of those who had gone before…. so this is part of the motivation that keeps us going.

    The two friends with Parkinson’s and MS are still with us but as the years go on we have seen their quality of life gradually get worse and worse with no magic treatments that going to help stop this ever increasing pain and distress…… but they are truly inspirational and puts my journey into total prospective.

    Keep pushing forward, make plans and go after them. Do look at how you can empty the rucksack…… you may be thinking that this dies not relate to you…. but I am yet to talk with someone who eventually identifies a few ‘things’ that are holding them back from getting on with life.

    I often come across as the most annoying positive person…… but the other option is not one we accept.

    The road we navigate on our journey has two directions to follow. There are two signs along this road one sign is pointing to Pessimism, a mindset that always sees the worst will happen, not appreciating that the many treatments available can do the job, where stress and worry controls every aspect of life and as a result the journey is made extremely hard and draining.

    The other sign points to Optimism, a mindset that is full of hopefulness, determination, confidence about the future and appreciates that the treatments available can turn the tide….. even in the most challenging storms. It’s important to continually seek to choose the optimistic direction as this simple thing can define how you walk out cancer journey.


    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike

    I had a bad week this week. I still feel a little lost. I'm sad that Cancer had touched our life's but it has, and there is no point trying to avoid that fact. So many have been I'm not sure you can ever be happy about what happens but there must be a way to make peace with it and still live life and make plans with a positive mindset. However you have mentioned the rucksack you gather at the start and during treatment and letting that go. I don't think I've let mine go but I'm trying to. I feel by letting go you have to acknowledge the sadness and fear you faced on your journey and you have to be OK with that. My father in law recently died from lung cancer a few weeks ago so i guess its been a trigger for me. It's reminded me of all the  people Ive lost in my life and triggered the fear of loosing again. But it will pass. 

  • Sorry to hear about your father in law.

    Acceptance is a process and everyone has to unload at their own time but it often helps if someone helps that process along. It did for me a number of years back…..

    Remember I said that a few friends agreed way back that the last man standing should live a full life in celebration of the others and I have done this but about 5 years back another very good friend died and I was hit by survivors guilt….. rather badly but I had a few sessions with a support worker at our local Maggie's Centre and she helped me work this out but I also did their Where Now? Course and that helped build the recovery blocks further….. this was 19 years after my first diagnosis… so worth checking this out.

    Do check to see if you have any Local Macmillan Support in your area as Macmillan do a course as well.

    Macmillan have also teamed up with Bupa to offer up to 6 free counselling sessions for people struggling emotionally because they are living with cancer. Clicking on the link will give you more information about this.

    I just had a call today to ask me in for a Prostate Biopsy on Tuesday as my recent PSA blood test was slightly off but it is what it is and we face what comes along if it comes along.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Mike you are an inspiration always. I love your rucksack analogy.  Good luck with the pesky slightly off PSA result hon. Hugs xx

  • Hi Kat55 and welcome.  It's certainly a tough road to walk whether you are a patient or the patient's main carer/ partner/husband/wife.  We are all affected by a cancer diagnosis most definitely.  It's never just the one diagnosed that's in pain and distress and has to re- evaluate their life/ lives. 

    Like the lovely Highlander's rucksack analogy I too have one I often use. It's concentric circles with the person with cancer in the middle and it goes outwards with the main carer/family in the next one, next one has medical/ nursing staff and supporters of the main carer. After the treatment ends' and remission happens these circles suddenly often vanish and you're quite bereft of support sometimes. 

    Keep leaning on and spending time with your personal support people hon, you still need them.  As a patient myself I'm really bad at asking for help/support but my 22year old daughter tells me off regularly! 

    As for future plans I keep them smallish, realistic and doable in the nearish future such as a 2nd 60th birthday celebration in July when my birthday is in January! I had a very poor 59th so a big 80s and late 70s disco is right up my street, I've already found a snazzy black jumpsuit from Monsoon in a charity shop, will puff up my hair big style and dance the night away this July. 

    Be kind to yourself and take your time, it took a long while to get used to your husband's diagnosis so it'll take a while to learn to relax again too.  

    Lucy xx

  • Mr Highlander I hope your hospital visit went ok today hon x

  • It was fine, a few weeks for results but as I always say unless I am told different all is fine.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Mike

    Thank-you as always for replying and sorry for taking a few days to reply but there was a reason and In the spirit of moving forward we actually got a new kitten last week. It was actually quite a significant step for me whilst also seeming insignificant.  Good luck with the biolopsy, I think you have such a great mind set even in the most challenging times.