Stage 4 OC and feel like the help just isn’t there ……

Hi Nic123

I'm so sorry that your family is on this journey.  It is horrible.  I'd suggest calling up the unit and/or the oncologist and voicing your concerns.  Then follow up by email so it's in writing. Patient Liaison service may be able to help you.

A feeding tube really sounds like it would help loads. I didn't enjoy having it in but it certainly kept me fed. Also  might be useful to ask about the supportive meds for nausea, etc. I wonder if they're working enough for him. I found that swallowing was easier after the second round of FLOT as it had started to reduce the tumour. I hope that the same will be true for your dad once he gets there.

Take care 

Hi Nic sorry to hear you are having a terrible time with your dad being so ill with his treatment. I have OC too and have just finished 4 rounds of chemo. It is very tough with all the side effects. I have lost 2 stone but I am managing to eat a bit. Whichever hospital you are under contact the Patient Welfare team and the Oncologist and I'm sure they will help adjust your dads treatment so he can manage it.

My next stage is an op in December then more chemo. It is very hard sometimes but try to stay positive and the help is there. I wish your dad lots of luck and hope they can help him

Best wishes

Dean

Hi Nic

it’s very hard, am struggling with my other half’s diagnosis he has lost 3.5 stone in a few months going from a very fit and active man and the chemo he is on is gruelling and his side effects will kick in tomorrow. (They changed his chemo as the last didn’t work) we were told yesterday that if he has the same side effects to report it to the treatment line for them to tailor possible further steroids to lessen the effect (obvs this is his case but they said side effects need to be officially recorded.

I am constantly trawling the net looking for soft food/enriching ideas. I have found the Royal Surrey Hospital helpful 

https://www.royalsurrey.nhs.uk/dietandcancer

https://www.royalsurrey.nhs.uk/download.cfm?doc=docm93jijm4n13785.pdf&ver=43249

Hope of some use x

Thanks suzie …. Tbh the last 2 days he’s actually being able to eat for the first time in ages!!!!! So I’m praying he can put some weight on now and get stronger!! .. just hope they don’t cancel his 2nd round of chemo on Monday! Xxx

Thanks for the message Dean I really appreciate it! … I’m happy to hear you have done 4 rounds and next stop is the operation! I hope dad gets to this stage! Just very hard at times isn’t it …. How are u feeling after 4 rounds of chemo? What stage is your OC if you don’t mind me asking? Is it normal to be bed bound and not being able to get up / eat and drink after chemo!? They have said they will reduce it by 20% on the next round but I’m just hoping he gets the chance to continue with chemo and that’s my only worry with the weight loss and being in bed all the time … can’t really talk to dad much about it coz I don’t wanna upset him xxx 

Thanks for the reply jubsyp - yes it’s horrific … I really feel for you and everyone going through this … it’s so sad…. And seeing dad after chemo was heartbreaking as there’s nothing we can do but wait wait waiting on others ringing us and saying what’s going to happen next … just a constant waiting game …. Not knowing what’s what and what’s coming …..and when we are asking for help to get weight on him we just get fobed off … however 2 weeks after his first round of intensive chemo FLOT yesterday and today is the first time he’s been eating!!! We are all gobsmacked!! Just need him to get some strength and out of bed more!! I will defo take a look at them links! Thank you ️ …… hope your ok… one day at a time xxxx

Hi Nic, sorry to hear dad is struggling.

My advice as a suffer would be to push harder for a feeding tube. I haven't needed one but from reading other stories they seem to work.

I struggled in my first four rounds of chemo with feeling nauseous. Along with, runs constipation, not going for days at a time, skeletal pain, loads of taste/bad taste, hot flushes, hair fell out, etc etc.

During my phone calls to oncologist I told them all symptoms and they gave me drugs at next chemo session to fight each one. I've also been to doctors and prescribed, oral morphine, paracetamol, tramadol for pains and aches. I'm like a mobile chemist it's a wonder I don't rattle as I bimble around...lol.

Going back to the eating thing. My wife is a great cook but is struggling with portion size and waste which upsets her. I know that what she puts in front of me on the dining table is good for me, flavoursome and I've loved it in the past. But, for me the smell of cooking made me feel sick, eating even a saucer size portion made me full and feel sick. Sometimes I've sat down, looked at my meal and cried my eyes out because I could face eating it. I to have lost about five stones since march but have it loose if I'm honest. Started out at 22 stone.

Just keep supporting dad. I've seen that he's recently been eating a little. Let him eat what he wants when he wants. Meal times have gone out the window for me.

I've had my op and am doing ok, back on chemo, but if your dad has lower oc they will take some stomach and eating will be even harder due to soreness feeling full quicker and dumping syndrome.

I feel like I can now say I've had oc and am optimistic for the future. My current challenge is getting through my next three chemo's and then it's all over.

Best regards going forward.

Geo.

Hi Nic my consultant said my tumour is a grade 3 but localised to just the oesophagus. 

The first two rounds of chemo were quite bad for me and I was in bed a lot and not eating much hence my weight loss too. Also had bad pins and needles so they reduced my last round by 20% which I think helped a bit.

I'm sure it is very worrying for you with your dad losing that much weight. Keep him hydrated and try to get him to eat. I found it difficult too

The team looking after him will maybe need to adjust the strength of the chemo even more so your dad's body can deal with it or even change the treatment. I know they have different options so best to keep talking to them

I wish you all the best and if I can help in any way I will. Everyone reacts in different ways

Dean x

Hi GeoFerret sounds like you have really been through it with all those side effects. It is very hard to eat when you feel so bad and at times I forced myself to eat just a little bit as I knew my body needed it.

My op is December unless scan on Monday changes that as they have said 4 more rounds of chemo might be an option. It just depends on how much tumour has shrunk.

Gearing up for op though , if I don't need one that will be a bonus

Good luck with the e of your chemo you are nearly there!

Best wishes

Dean

Thanks for the message!! I hope you’re doing well after the op… how did you find it all? I’ve read you are in intensive care for a few weeks and can’t talk is that right? 

dad is doing so much better after reducing his chemo by 20% and going from not being able to eat thick soup to now eating a meal and always eating is amazing to see!!  

he’s on his last round of chemo next Monday and then it’s pet scan and results time to see if the operation is still on the cards!!  His Oc is low but also in his stomach and 10 lymph nodes so it will all need removing all together .. but what ever it takes tbh …

feeling a bit helpless as he’s so up and down and don’t no what to do or say at time as he won’t talk about anything which is absolutely fine as I would struggle if it was me!! 

I think he’s probs really scared of the results and the possible operation and what to expect from that now! …. 

scary time for us all on here!️️