How to be positive?

Hello JuleB

Sorry to see you here, it’s a place none of us wish to be. My boyfriend was diagnosed with bowel cancer September last year via a ct scan due to severe pain from a bowel obstruction just age 42.  Following emergency surgery the biopsy confirmed T4 N1 M0. Due to various major complications following surgery he was unable to have chemo as had gone past the 12 week window where chemo is recommended following surgery.  So unfortunately now he has a few tiny mets on his liver.  He is having chemo, 4 doses for now then they will re scan to see what affect the chemo has had so far. It’s a matter of taking one step at a time.  We have good and bad days and the the bad days are really shit. but we both help eachother, if he’s down I pick him up and if I’m down he picks me up.  We have amazing support from our families and friends and we have an amazing team around us including an oncologist who we have 100% faith in.  It’s been a tough ride but you just come to learn to live with it, we have to, we’ve had to learn that this is our new normal. 

You are also young, have they mentioned testing you for Lynch Syndrome? My boyfriends tumour has had various tests but no genetic links what so ever. So this horrible disease struck him purely down to bad luck.  Which is really unfair as he’s always took care of himself, always been physically active playing every sport you can think off, so on the bad days we question ‘why, just why’.  As the advert on tv states, cancer will strike anybody anywhere. 

All I can say is take all the help and support you can from the people around you, you will be on a rollercoaster of emotions, but somehow, from somewhere you find the strength to carry on, always remember though that it’s ok to feel angry and sad and scared, but you’ll pick yourself up and be strong. 

Mall the best to you 

Lena x

Thank you Lena for your message. I hope your boyfriend is well having his chemo; i’m pleased that you both have support from families and the oncology team. Yes, we also ask why? I had no risk factors, fit and well so it was all such a shock. They have found no genetic links although the oncologist has referred me to the genetics service, but there is no family history. 

Thank you for your advice about trying to stay optimistic and carrying on. I do feel angry, sad and frightened, it seems so unfair that my family are having to go through all this. Yes, to carry on is what we all must do, with positive thoughts and with the love and support from family and friends. 

Best wishes to you both, 

Julia x

Anytime you want to talk, I’m here. It helps to talk to people that are living it too. As great as family and friends are, it is hard for them to know exactly what we’re going through day to day. 

Lena x

And yes, he is coping quite well with the chemo, he’s having it fortnightly, a few side affects, such as tiredness, feeling a bit yucky now and then and a few toilet issues but nothing like we were anticipating, and we’ve learnt the pattern now, that these feelings are just for a couple of days following the chemo, then it’s settles, ready for the next round lol.  But they keep a great eye on you, cannot fault the care he gets from the hospital, think they all have a soft spot for him though lol. Keep us posted on when your chemo starts and how you get on with it. 

Lena x

Thank you Lena for your messages. Pleased to hear that your boyfriend is coping well. I start chemo tomorrow, would be good to still be out and about  so it’s good to hear that your boyfriend is tolerating  it well. Yes, friends and family are supportive but don’t really know what we’re all going through.

Best wishes,

Julia x 

Hi ,

Just to pass on a wee observation from watching my mum . She went straight to chemo with her tumours still in .  Watching the chemo successfully shrink the tumours right off the scan amazed me at how powerful chemo can be for some people . When it’s used in a mop up situation people maybe don’t see how successful  a treatment it can be on it’s own . 

The scanning process is incredibly robust . One of my mum’s recurrences was monitored from 2 mm and removed at 7 mm . Still tiny . She was in hospital for two days and fully recovered within two weeks . 

Some recurrences are still very treatable . My mum is ten years a stage 4 patient and whilst in active treatment it was tough . Three years where six months of it was hard but balanced out with seven great years having fun . 

Immunotherapy is just emerging in Bowel cancer and is having a good success for some patients and that’s before you get to all the other treatment options . So I guess my mum looks at it that there is lots of safety nets in place and hopes she lands in one if required .

Additionally after two years the recurrence rates significantly drop off .  

My mum’s oncologist keeps her on frequent scans to get in quickly . I have been overwhelmed at the care they give her . The stats are slowly improving since my mum was diagnosed and given most are worked out over a five year period they are still a rear view mirror and not totally reflective of the aggressive approach surgeons are now taking . The oncologist have more options than they did ten years ago and I have little experience of radiotherapy but my mum’s oncologist said they are giving surgeons a run for their money in the success they are having .

A lot has changed in the last ten years and we are hoping for more success . It’s slow but we hope for more .

A bit long winded but I hope this will be a long list of safety nets you will never require to access . Many people pass through here with you situation never come back . You certainly don’t have to feel positive all the time when you have had your confidence in your health knocked. It’s early days and you will be able to see from posts people wrestle back and forward with this . They share their thoughts and pick each other up . After a few good scans you see that slowly changing and their confidence in their future starts to grow or so it seems to me . But probably better to come from others real experiences and not my observation . 

All the best with chemo .

Court 

Thank you Court for your message, your Mum’s story sounds so positive, you have both been through a lot over the past few years. Thank you for talking about all the different treatment options available now; the oncologist very briefly mentioned that if it did re-occur it would be like managing a chronic illness. I still find it hard to accept it all and still ask why? But then I guess we all do. Yes, chemo today, thinking of it as positive to zap it all! 

Best wishes,

Julia

Hi Julia

I just want to add that it is still early days for you. They say that there are 5 stages of grief and most people do go through most of them before they get to acceptance and that can take a long time. What looks to you like everyone being positive is often some time after the diagnosis and almost everyone I know still has some bad days. For me the positivity comes from realising that there is nothing you can do about the eventual outcome, other than having all of the treatment and then hoping it will come out well. Once you really come to terms with the idea also that we are all going to die sometime and it could just as easily be a car crash or a heart attack then suddenly every day becomes precious and you try to make the most of every moment. This is one of the few gifts that cancer gives, you reevaluate life and what is precious to you. Entire days spent worrying yourself sick do seem like a waste of this precious time. I used to ask myself that if it came back and I realised on my deathbed that I had spent most of my remaining time depressed and miserable, then that would have been the true tragedy.

My advice would be to allow yourself to mourn and don't expect to be a saint, have the occasional freak-out and cry, I always feel better after one of those sessions where I articulate my fears. Then just get on and enjoy life in between. Soon the good phases will outnumber the bad and your fears sort of drift into the background and you realise that you haven't thought of cancer for hours/days/a week.

Nicky