Life after cancer.

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Hi I am 49 years of age and 6 years post op, after being diagnosed with stage 3 oesophageal cancer.

In the early part of 2018 aged 43 I underwent the ivor lewis procedure accompanied by pre and post op chemotherapy, my treatment finished in mid 2019

Eating is a huge subject here and I wanted to share my experiences.

Pre op I could barely eat or drink and was looking at soft foods like mince and potato ect. And towards the end I had to blend all my food while my nutrition was assisted with an NG (nasogastric) feed tube.

After surgery this was replaced with a PEG (percutaneous endoscopic gastrostomy) feed for a few weeks while I recovered.

Post op my feeding habits were hit and mis and seamed to take ages to get back to normal although I still struggled with portion control, pre op I was a big eater.

It does get easier, or you just adapt I’m not quite sure.

What I eat today, except portion size is no different from before my surgery. Milk is my only change in diet and I now use a lactose free variety. I tend to avoid regularly eating tuff meats like beef, but this is down to slow gastric emptying.


Some other symptoms I experienced were “early dumping syndrome” this has all but passed now and I don’t remember the last time I had an episode  

I still have the occasional symptoms of “late dumping” and have found that shortbread or a chocolate bar helps while the effects pass.

All this was hampered by Slow gastrial emptying syndrome, this in its self cussed fatigue and even today I have days where I struggle with energy. I continue to take medication to help with this.

Most people I have spoke too all say about the rib pain and OMG does it hurt, but what a small sacrifice to pay, the pain by the way does get better and after a year or so for me it got easier and now I get no pain, just the odd twinge now and then but is more of a discomfort rather than pain.

During my treatment I was able to continue working although after the op I was off work for about 12 weeks. I work for a car manufacturer as a fire fighter which in its self is a challenging job, but I was lucky to be able to return to normal duties, although it took a while. So there is hope. 

I hope this helps someone through what is a challenging time and I hope you all well in your journeys to recovery.

on a last note PTSD is a side effect and I struggled in the early days, it’s fair to say that mental health shouldn’t be ignored if your suffering then talk to someone about it, it does help.

 

  • Hi Clive.

    That is very encouraging to hear from someone who is 6 years post op and to get your experience. So thanks for posting. Are you still being monitored by the hospital ? 

  • No since covid I was on annual phone calls but now I have open clinic access. With all the help I need just a phone call away. 

  • Hi Clive

    Thanks for sharing. It's very encouraging. It's wonderful to hear how well you are doing, especially returning to such a physical job. I'm 20 months post surgery/15 months post op chemo. I'm trying to live life to the fullest but still counting down to get past the 5 year mark. 

    Take care

    S

  • Thank you Suzie Just take and love each day as it comes,

    5 years was soooo fast for me and numerous times on the approach had to double check the dates. 
    I’m already planning my 10 year anniversary with a safari holiday. 
    you too tale care. 

  • Dear Clive 

    what a wonderfully optimistic contribution to this forum.

    Full of thoughtfully given advice for those on the same pathway as yourself with hopefully the same outcome. 

    For me it will be a different path I am an older lady and deemed unfit for the rigours of the gold standard treatment which gives one the best chance of survival. 

    However I wanted to pick up on your last comment about mental health and PTSD.  

    it is well documented that patients with our cancer type require careful counselling and professional psychological therapy.  I have been referred for such.  And I firmly believe that our loved ones are enormously impacted too.  

    Did you and your family receive any MH therapy or advice from professionals?  Did it help? Did you have any informal sessions eg at a Maggie’s centre? 

    With reference to PTSD.  I experienced this after the loss of my husband to metastatic disease (another cancer type).  He was a 53 year old asymptomatic gentleman playing club level squash in March 2007 and he passed away at the end of April.of the same year.  I raise this in case any bereaved family members are reading. It may be useful for them to know annd recognise that this can complicate the grieving process.  And to reiterate as you have already done that Mental Health significantly adds to the disease burden both during treatment and after.

    My sincerest best wishes that you continue to flourish and heal xxx

  • so humbling but insightful to read the above posts, do belive the whole way your life will change due to eating restrictions was played down quite a bit, we stupidly kept a break away that had been booked march this year to say good bye cancer after masectomy last year, how wrong we were, i tried to explain to hubby that imagine walking into most supermarkets, restaurants, pop up food courts, as we did enjoy eating out as a treat, but not being able to have anything, or risking something in a restaurant to find your head in your hand bag/amazon sick bag, done that twice now, penny has finally dropped.

    did any one elses partner struggle with the guilt of eating normal portioned food, while you struggle with the soups and shakes, try to reassure him its not an issue, but so frustrating after months of having no appetite, now flipping starving!!

    rosiee, massive fair point about the mental health side, think thats always been worse especially first time round, was worse than seeing myself looking so different, which when spring kicked in, and i couldnt cover up got used to my new shape and started to love myself again, so to see how ill and tiny i look now, is a new struggle, so will be reaching out definately.  and is it me now the weather has changed, has made a difference to my mood which is already really low.

    pre radiotherapy ct scan 3rd, then laparoscopy 10th with food line, be nice to see the radiotherapist again who finished off my breast cancer treatment.  remember when we left a card and some treats to say thank you for the way they made the treatment so lovely, saying to claire " with the greatest respect if i never see you again, i am happy with that", that was april 29th this year, christ you cant write this can you, not sure if any one else had this but just going back into the churchill and the same car parks and same corridors, stupidly reduced me to tears, felt so stupid, sure this will be some part of our new normal. 

  • You are in my thoughts. Life has been so unfair to you. And your kind words to me mean a lot xxx

    • Hi Rosie first off I’m sorry to hear of your diagnosis and of your husbands passing. 

      To answer your Question on PTSD I personally didn’t reach out for help (hypocrite I know) however being part of the organisation I work for and the nature of my role, I have done many courses on delivering trauma risk management (TRIM) to crews who deal with major trauma and are exposed to some serious injuries, so knowing the triggers helped me understand what I was dealing with. 

      However I do regret not having reached out sooner for a more tailored solution to PTSD as even with all the experience I’ve had as a metal first aider and TRIM, non of this fully prepare me for the feeling guilty, the over thinking ect ect. 
      All this was hampered by COVID and lock down. 
      I’ve now come out the other side nowadays but just know things could have been different. 
      I have buddied 3 people within our organisation who sadly were diagnosed with the same form of cancer. All 3 had the symptoms of PTSD and had the help I would have so I know how beneficial it is.
    • My brother too is a partner to a oesophageal cancer patient Sadly his wife like many passed away last year and he is now receiving grief counselling. 
  • Hi W1cky Im sorry to hear about your diagnoses. As if it wasn’t bad enough to get cancer, but to get it a second diagnosis must have been devastating. it’s with a true and heart felt sorry this disease has returned. I wish you all the best with your journey.

    I echo your comments and I still get anxious when going to the hospital even if I’m visiting someone else, I get your comments about pulling up in the car park to, as for winter I still feel the cold. Also the new body shape, I say it was my silver lining. Pre diagnosis I was 120kg (18.5st) and at my worst I was just 79kg, (11st)  I’ve since put weight back on and am at a happy and steady 91kg (14st)

    As for the feeling guilty, my partner was and still is some times especially when we’re out and order a small breakfast and a large breakfast and they always give me the large. But 6 years we’re both used to it now.

    One way we used to order was a meal and a starter or 2 we would then share it. I’d eat half of the starter/s and a small portion of her main. Don’t be shy to ask for another plate, if they moan use the guilt trip and tell them of your diagnosis.
    This worked well for us because we like the same things. But at first I used to avoid going out and hated it. Again the PTSD would kick in. 
    Im now at the stage I can eat the best part of an adult meal when we go out so I don’t think about it now, and I’m not shy to ask for a doggie bag. As I did last week when ordering a rack of ribs. I ate 1/3 and took the rest home. 

  • Thank you for your reply. Not the same as you but my workplace environment and background's was/is traumatic to my mental health. Both my husband and I were scientists working on oncology products in the pharmaceutical industry.. The vocabulary when I returned to work was triggering. Reading reports anbout events ( eg dearh) on a clinical trial it became more about the human story behind the data point. It was very humbling. 

    The company did pay for me to see a psychiatrist but all he did was make me cry. I found the best therapy was reflexology and rheki. So much so I qualified to practice myself.  The PTSD images did diminish over time and happy memories replaced them. 

    BTW I am more than cynical about the complementary therapy I have been offered. No touch therapy.  Sending me a squeezy star to squeeze when I feel anxious and an aroma stick to sniff. Bit like putting a corn plaster on a fractured femur. I suppose it made me laugh when I was offered it. And after all laughter is the best medicine.