My name is Ray ( or Geoferret ) and I have been going through treatment for oesophageal cancer at the junction with my stomach since diagnosis in March 23.
I consider my self pretty positive and single minded when I need to be.
I have had four rounds of FLOT chemo, multiple x-rays and scans, surgery and am currently waiting on a date for more chemo. I have tackled everything on a day by day basis and managed pretty well so far.
Great news post surgery that there are no signs of cancer cells in the margins of my removed Tumor.
My problem right now is with eating. I have had 75% of my stomach removed and am feeling full all of the time even without eating. Initially I ate pretty well but later as my scar tissue has shrunk I have been getting the old dumping syndrome. It makes you feel very unwell and I think I have gotten some form of mental issue where coming for smells and looking at food presented makes me feel really tearful at the prospect of eating. Very unlike me but I'm getting very emotional and depressed with it all. Seven months of one thing after another will do that to you.
I am so lucky to have received the diagnosis and treatment that I have that I don't have the right to feel upset and depressed. I'm so disappointed in myself in feeling this way.
I'm sure that a lot, if not all of what I'm feeling is pretty normal but even knowing that doesn't help right now and the thought of going through more chemo that affected my taste and made me not want to eat first time round is even more daunting.
End of moaning...lol. Just thought I'd share how I've been feeling in case it helps me to get it out or for someone else to know they're not alone.
Best regards to all of you where ever you are in the process.
Geo.
Dear GeoFerret
You have every right to feel tearful and depressed! You've been through hell. You've kept us upbeat, maybe can do that for you.
I believe the more a foodie the harder it will hit you. I hope things get better for you soon.
I'm not far behind you in fact. Had my surgery on the 06/10. All seemed fine at first then I deteriorated quite quickly. I'm still in HDU with a hole in the wall of my oesophagus (thank you!). I had 2 changes of "sponge" so far, and due for another one on Monday. And so on until that damn hole closes. That's Alien's revenge for my kicking is out of the airlock?
I'm in hospital until November and maybe s bit more. Not happy prospect at all.
But hey. I'm still alive.
Hang in there
Thank you Seasurf or your kind words. I am so sorry to hear of your predicament. A hole in your Oesophagus sounds quite serious but if they have a way of closing it, that's good. I know it will take time. Does it mean you are nil by mouth for all that time? Sounds awful.
I think I am more angry at myself for not coping with this latest challenge. I'm normally a lot more positive and driven.
Good luck with your treatment, wishing you only the best. I'll try to stop feeling sorry for myself...lol
Best regards
Geo.
Oh Geo. I’m so sorry to hear you’re feeling a but down, but just think of everything you’ve been through and no wonder; the drugs, the treatment, the operation, not to mention the emotional strain. It’s good you’ve got this off your chest and it’s absolutely brilliant news that your results have come back clear. Look forward to reading more from you as you continue your recovery. Best wishes, Julie
Hello Ray/Geo
You have been an absolute inspiration to many this year on the ×same journey, me for one, and you have every right to have some down times yourself too. This journey is massive, even the curative pathway. You have done amazing so far and should feel so proud for those you've helped. Do not be disappointed in yourself!
I was told to expect emotions to be a rollercoaster afterwards, with high highs and low lows as the body copes with mending. I know this to be true from previous operations. Go with the flow and allow yourself to feel this way, and soon enough your positivity will rally and you'll look at this post and think 'yes, it was just a blip'.
Food will unfortunately always be an issue for us now, but that too will get easier. I'm about to post about my issue too, but that old adage about time being a great healer is true. And we're lucky, if on this particular pathway, to have been given that option.
Thank you for all your advice these past months, you've been wonderful and GeoFerrett will be back on form soon. Be kind to yourself.
Hey Ray
so sorry to hear you are not doing so well with food.
I had my surgery in Cambridge almost 10 years ago now but I do remember the dread of post op chemo. Two days into my first cycle I became very ill, I was admitted for 10 days (longer than for my surgery!) till they got me walking. They said the chemo was more than my body could take. Getting over it was a long haul, but I’m still here.
As far as eating goes, here in Cambridge they now send patients home with a feeding tube so they don’t have the worry over loss of appetite and trying to put weight on and I don’t think they do post op chemo. But they include radio therapy preoperatively.
Sounds like you need to have a conversation with your oncologist and soon! You are not in the right place to make a full and rapid recovery.
Don’t fall into the trap of feeling depressed because you are feeling down. Talk and share. Ask for help. Next Monday or sooner!
good luck mate. You’ve come this far don’t let another disease take a hold.
Counting the days, making every day count.
Brent
Hi Geo/Ray
Early recovery dude. I had 2 rounds of chemo, Ivor Louis open surgery, way back in Dec 2013. Took me about 2+ years b4 I started putting weight back on and it really didn't change my physical appearance intil late 2016. Chemo and surgery really fd up my taste, smell, never felt hungry. I too had junction of stomach mass, good margins and 28 lymph nodes were removed and stated as clear.
Dumping, both early and late plagued me, much better over last 4 years. However, still experience suger crash now and again for no particular reason.
I held on to fentalyn patches for about 6 years, no one told me how addictive they were, use to sleep all the time. I weaned myself off the patches over the course of a year. Best thing I did dude.
Life is pretty normal for a 62 yo, have 3 holidays abroad per year, and not sit on yer butt holidays lol, enjoy going to music festivals, work full time, get it up, remarried and living life, enjoyinging my job as a welfare support worker.
Listen Ray, if you can accept beating Cancer, your mental health will improve, although the NHS had a major share in getting you back to health, so do you dude.
Keep on Keeping on.
Hi Brent. I have just read your reply to Geo and felt compelled to reply to you as I go into Addenbrookes at the end of October (31st). I have been well looked after and feel well informed. I met with the surgeon earlier on in my journey and more recently saw the dietician, physiotherapists and the wonderful specialist nurses. Although nervous, I am looking forward to getting this over with. Good to hear you are doing well. Best wishes, Julie
Hi Geo
You are very entitled to feel like you do. I've watched my dad go through every side effect, setback and emotion for the past 7 months. Your journey is incredibly hard and I'm so proud of my dad for how he's handled things.
My dad, like you, was diagnosed at a similar time, had his surgery in July and is currently coming up to cycle 2 of his post op chemo. Eating is a huge issue for dad, he's lost weight, which is heartbreaking to see and he has non-existent appetite. Sometimes he needs reminding to eat. He worries about his lack of eating and is trying his best. If it wasn't for his jej feed tube, he likely would've lost more weight. I can see how fed up/depressed dad is, this whole process has changed him, but I try to help keep him upbeat reminding him how far he's come and how well things are looking currently.
The post op chemo is hard and he wasn't sure he was going to do more chemo. He is planning to stop it after this 2nd cycle. He lost his taste and it hit him hard the first time. He's absolutely dreading facing that again and the damage to his nerves in his fingers and toes. He's reached the point now where he wants to get on with his life again and continue with the recovery from surgery. It's a long road for sure ( that no-one wants to be on!)
Try not to be too hard on yourself. You're doing amazingly well. I can imagine all this must change your outlook and how can it not affect your mental health? It really is a day by day process. Keep going, think how far you've come. You will get there, as I know dad will too. Sending you much strength and positivity x
Mate I hear you!!!! During my six weeks in hospital I broke down!! So another doctor came to see me and prescribed me antidepressants and 4 years later I’m still on them. What we have been through is traumatic to say the least. I’m looking into PTSD because I feel a lot of us are suffering from this and don’t know it.
Rob
Rob,
I hear you. I had the surgery on the 06/10/23. I'm still in hospital with another sponge change scheduled tomorrow.
Sometimes I don't think I'm being understood. I broke dow a few times too.
They offered antidepressants but I don't want to go down that route.
Thank you for mentioning PTSD I will look into that, and see if I can find something that helps me. I am neurodiverse, have had other shit in my life and maybe I should seek help this way.
Maybe you could too? Macmillan has list of groups for people like us, who've been through the same trauma. They understand. The snag is that there aren't that many around.
Take care of yourself and share with us when you feel low.. we are on the same boat after all
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