Surviving Oesophageal Cancer

Hi Dorajoe – I’m so sorry that you find yourself here and I know how terrifying it all is at first. You’ve come to the right place as there is so much support in the forum and you’ll find lots of people able to lend a shoulder and offer support and advice.

The waiting is always very hard to do – I tended to try not to think too far ahead and to deal with my situation in little chunks of time, but sometimes that is easier said than done. You’ve had the CT scan and once you get the results from that then you and the team of docs will be able to devise the best treatment plan for you. If you need any questions answered, then I, and others here who’ve been through this, both as patients and carers, will do our best to try to help you.

Try not to worry too much, come for a chat and keep us posted.

Love and hugs Crystal xx

Hi everyone and thanks for your advice on pain relief, I feel we have just been left to "get on with it" since John has come home, the doc refused to gve extra tramadol last time so I was just curious as to how long you had all taken it.John is doing well. has good days as well as bad, we just take each day as it comes. We still have not heard from the hospital to meet with the consultant and discuss the results and after plan, I shall be calling them next week if i still haven't heard, just feel quite down at the moment and looking to blame anyone or anything for things not going as i would like.

Michael i am so glad to hear Frank is making a good recovery, John too was in quite some pain when the epidural was removed but the pain soon got controlled. I bet you cannot wait to get him home, glad to hear he is eating ok I felt so bad at first when i was dishing Johns meals up on a side plate, for a good week he was really fussy with his food and tended not to eat much although he seems to have a better appetite now and is eating more.

Crystal how are you doing these days, you seem to be there offering everyone support and advice bless you and like so many I think it great you started this thread, hope you are well.

Dorajoe- Like Crystal, I am so sorry that you too now find yourself on this site but be assured you have people here that you can turn to for help and advice, my partner has this disease and 4 weeks ago underwent the operation. I know it is dreadfully hard to wait for results, this was the most emotional difficulty for me and i am now waiting again. Just go with your emotions, if you want to cry then cry it's a good release, do you have family and friends to support you? Please keep posting we are all here to help and walk beside you as you take this awful journey-big hug to you xxx

Jo-Any news yet? You too are deeply in my thoughts xxx

Love and hugs to all

Sal

xxxxx

Hi Michael

I’m pleased to hear that Frank is home and doing so well. His recovery should be much better now with home comforts around him. A little tip - you might find that he needs around 6 pillows to enable him to sleep in an almost upright position. Also, one of those large horseshoe shaped pillows. I found this helped a great deal to stop acid reflux and to stop the scars stretching, and the horseshoe pillow was good for the chairs and sofa as well. In fact my husband bought me a reclining bed which was a godsend at the time, but I found the pillows to be essential.

Sal – thanks for your kind words. I’m ok and doing well, although have been overdoing stuff lately.

Good night all – sleep well. Love Crystal xx

Hi Michael

Great news that Frank is home, I too was going to recommend a v shaped pillow, i bought one for john prior to the operation and it's been a godsend, both for on the chair/sofa and in bed too as it keeps them raised (throat above the chest is the key). It's just trial and error over he next few weeks for meal times, john is still eating very little at mealtimes although snacks quite good in between, cheese and crackers etc. He used to love a cup of tea but can't abbear it now funny how the taste buds change. Glad to hear he got the biopsy results, we are still waiting and to be honest i am getting anxious now (i've always been quite a negative person!) and impatient too! I'm going to give them a call next week.
Crystal, it is now the weekend, i don't know if you work but make sure you relax and slow down and unwind over the next few days, i bet it's so easy to feel ok and overdo things without noticing, John caught his skin when he lied down on the settee the other night and had this dread that when he looked he would have been torn from the scar bless him, not one to panic is john but again a reminder of things which have gone on the last few months. You make sure you have some quality time for yourself, you are needed here!!!

Everyone else outh there hope you are doing well, x
Love and best wishes
Sal
xxxxxx

Hi Michael - Frank seems to be recovering really well and it's equally important that he's in good spirits. I too had leaky scar tissue which the district nurse came to dress once a week for around 3 weeks. I did have showeres though but was very careful not to get the area wet at all, tricky though. Does Frank still have the tubes in his duodenum as that might make it difficult to shower too? Mine stayed in for a couple of weeks then I pleaded with the docs to have them taken out. I must say that that procedure hurt a lot for me (don't tell Frank LOL) but was over quickly.

It's really good that he can eat so well at this stage as most people seem to struggle for quite some time. Tastebuds seem to change and whether this is due to chemo or the surgery I don't know. Much of it was trial and error with me. The main thing for you right now is to watch that chest infection and make sure that Frank gets loads of sleep. It's so good to hear how you are both doing and you seem to be coping with it very well Michael. Good on ya. Keep us posted.

Sal, many thanks for your concern. I rested a lot over the weekend and feel much better for it. You're so right, it's very easy to feel ok and then do too much, which is what I'd been doing recently. My whole body was aching and I'd resorted to painkillers again. Back to the computer games now LOL. Hope John is still doing well. I notice he's gone off tea. I did too - I think it's the milk as I could manage green tea ok. As long as he can maintain weight then he'll be doing ok. Hope you're ok too and more able to relax without too much worry now. Big hugs to you.

Mick, if you're looking in I didn't recognise you without your helmet on ROFL.

Dorajoe - if you're reading this please join us on the forum as we are all concerned about you. You've posted here on this thread and also on New, Dad Has Oesophagus cancer thread. There are plenty of people here on both threads who have been through this and can help you with advice and give you plenty of support. If you click on 'view my profile', or my green name above this post, then you'll see my profile. It would help a little if you could fill in a profile and this would enable people to send you private messages if you'd like that. Hope you are ok, let us know how you are doing. Hugs to you.

Anyone else out there, I hope you're doing well xx
Love - Crystal xx