From a Carer’s Perspective

[harveydylan]

hello to all in the oesophageal cancer community. not necessarily a community that anyone would particularly choose to be in but also comforting to know others are in the same situation.

my husband was diagnosed with stage 2 OG in September 2023. he has had four chemo sessions and is due to have surgery at the end of february 24.

we are at the stage of coming to terms with the major surgery ahead but also life afterwards.

having joined this group ( my husband chooses only to deal with issues as and when ) I have to say I’m both glad to have done so but also daunted by some of the testimonies I’ve read from other sufferers. however I feel, as someone who will be in a supportive role, that this information, however worrying, is what I need to know to prepare for our “new” future.

so thankyou to all of you who have shared and I wish you all the best, from the bottom of my heart, for your onward journeys.

[ccfc]

I wish you the best of luck on your journey. If you have any questions along the way, which I’m sure you will, this is the best place to get answers. James.

[Dodo2903]

Hi, my husband is now 5 weeks following surgery in Bristol ( he also had 4 rounds of chemo pre-op). He is slim, fit and healthy (aside from the oesophageal cancer!) so low risk for complications following surgery. However he developed a small anastomotic leak and pneumonia 10 days post-op. After 3 further procedures and more days in ITU his recovery was back on track and he’s now home. It was a very anxious few weeks and mentally exhausting but I know that this is just the beginning of a potentially rocky journey. I really appreciate this forum especially as there is no support group local to us. Best wishes - look after yourself and I hope the surgery goes really well.

[Molly14]

All the best for your husband’s surgery. Things change but you learn to adapt and make a new life. Best advice I can give is take it day at a time x

[PopandMo]

Indeed, life is certainly different post op, but it’s a learning curve and can be a very good life! I’ve certainly had some very helpful advice from this group. Best wishes to your husband and yourself on your journey. X

[harveydylan]

Thankyou all for taking the time to reply and for your many good wishes. It means a lot at this time.🙂 x

[Graham39]

Hi,

I was diagnosed with stage2 oc 13 years ago when I was 70 years old. I had the op. It took a few months to get back to full strength and for my digestive system to adjust after which life returned to normal.

I'm now 84 and still walk 18 holes of golf. My only connection with oesophageal cancer is I take a lanzoprazole tablet every day.

[harveydylan in reply to Graham39]

Graham thankyou so much for your response. It’s so encouraging to hear of a positive outcome and that you’re still doing well and playing golf!

I’m trying to prepare for what comes after the op so that I can support my husband. I know that he is “lucky”, like yourself, to be able to have surgery. However I seem to be coming across layers of possible post op problems. I guess it really is a case of one day at a time and that everyone’s journey is different. So, again thankyou for your input and for letting me have a glimpse of “the light at the end of the tunnel”.

[fortunatus in reply to Graham39]

Well aren't you lucky. The experience for most of us was father more difficult. Happy golfing.

[Julieanne60]

Hi there. I had my 3-way Oesophageal operation about 3 and a half months ago. Initially I felt tired and sore but totally manageable due to the pain control managed by the wonderful nurses and doctors. The first few days I was in ICU but then transferred to a less intensive ward. Here I was able to move around more on my own and shower myself etc (obviously had to drag my tubes and fluids around with me but everything is portable). Once home (with feeding tube) after spending 10 days in hospital I began to do a little more each day and after about two weeks managed to get the dietician to remove the feeding tube. I’ve recovered really well and since the operation I’ve travelled around to see family in Nottingham, Newcastle and Copenhagen. I’m going to Italy in three weeks time and Spain in May. I’ve not had many problems with dumping (2 episodes to be exact where I experienced severe diahorrea) and have found that eating normal food is fine as long as it’s chewed well, eaten at regular intervals and in smaller amounts.

I was nervous going into hospital for the operation but there was no doubt in my mind that it was the best thing to do, and to be honest, once you’re under the anaesthetic the next stage is waking up and getting back on with life, albeit with a few dietary changes. I wish your husband all the best in his forthcoming operation and hope that he makes a good recovery, and hope that you are also able to breathe a sigh of relief when it’s over. With best wishes, Julie

[harveydylan in reply to Julieanne60]

Julie thank you so much for your response. It means so much to hear about your recovery and also your positivity.

I’ve tried to paint exactly the same picture you’ve described , to my husband, ie to think about wakening up from the anaesthetic and then to focus on future recovery and life going forward. Doubtless there will be hurdles, big or small, but thinking of it as a positive in that this opportunity for life, on the other side, would not have happened in the not too distant past.

I wish you all the best for your continuing recovery and plans for many travels in the future - something else that we share!

Many thanks again. x

[Deeedals]

wishing your husband and yourself all the best for your forthcoming journey. Yes, it can be a bumpy road at times but as you can see from all the testimonies it’s a road well travelled and we’re all here to tell the tale and help along the way. Xx

[harveydylan in reply to Deeedals]

Thankyou so much for taking the time to send this positive message ☺️xx

[whasler]

Hi Harveydylan, my wife knows how you feel as do I. I was operated on in Aug 21 having been diagnosed with Stage 2 in March. Chemo either side of the op was challenging but the op itself will challenge both of you. Hope this group will assist you and all the wonderful people at your disposal in the NHS. I had a leak post surgery at Portsmouth which necessitated a chest drain as my breathing was laboured and vital signs weren't great. Also this post Covid so only wife could visit and developing atrial flutter with my heart! However once you're out, you start to slowly recover. 2.5 years on (and 2 years from last chemo), I'm now doing much better. You never completely shake the cancer cloak even when your oncologist and surgeons no longer want to see you but I find being out at work (still work full time) or with people socially is the best medicine. So good luck to you and your husband!

[harveydylan in reply to whasler]

Thankyou so much for your message. It means a lot to know that there is light at the end of the tunnel. I think we’re both more aware now that recovery can be a bumpy road. Having read other messages, and now yours, has helped us to prepare for this. My husband starts on that road today as he is undergoing surgery at the minute. I’ll certainly be glad when today is over and then begin to support him on the road ahead.

I’m so pleased to hear you’re doing well now after what has obviously been a very challenging process at times. Thankyou again for your valuable input and best wishes for your continuing recovery.

[whasler in reply to harveydylan]

Good luck to both of you and hope the coming days aren't too painful. It's a hell of an op which nothing can prepare either of you for. But things do get better