Hi just need to know I'm not alone

Hi,

I'm so sorry you're on this journey.  This group is for partners and those with the diagnoses. I'm new to this journey as I was only cushioned in August. I remember the waiting and how scary it was. I would suggest getting in touch with the clinical nurse specialists and ask them for an appointment so you can talk things through. They provided me with a booklet describing what's to happen.  You need to ask them for a timetable of what will happen when. They will need to stage the cancer to decide on the best course of treatment.  

For the staging for me they  did - initial endoscopy to diagnose, CT and PET scans, endoscopic ultrasound,  laproscopy and blood tests. From these tests they'll be able to determine the size, location and type of tumour and whether or not it has spread. There is usually a discussion at the multidisciplinary team meeting and a consultation with the oncologist to look at the best course of treatment.  Well this is what happened for me. I felt less anxious once the staging was completed and treatment started. I'm on FLOT, then hopefully surgery and then FLOT. others are on a combination of chemo and radiotherapy  or there's immunotherapy. For some people who are struggling to swallow they can out a feeding tube in at the laproscopy stage. Nutrition and exercise are vital for us - eating,  healthy balanced meals with a good amount of healthy protein is vital and exercise. Little and often is better  than overdoing it and having to lie down and recover for days. Important not to push too hard on exercise and to listen to our bodies.  Walking is great. Exercise activates part of the immune system. 

There are many questions but for now I'd suggest asking about the timetable of procedures around staging. 

I'm so sorry about your son.

Take care.

I nearly forgot to say. I'd recommend you both attend the appointments and write things down or ask if you can record it. Both your brains will feel like swiss cheese. I'd stay away from the internet in looking at prognosis.  They all seem to have copied the same source material and I'm not sure if how old it is. Also everyone's cancer is different. 

Hi,

I'm sorry you're having to deal with this, and also very sorry to hear about your son - that is a very tough blow to take.

From my own experience, I can say that it will take you a while to get your head around the cancer diagnosis, and that your emotions will be up and down in the meantime. The waiting for further news will be difficult - but things will get clearer in time.

The medical team will help you. As soon as the results of the PET scan are in, they will formulate a good plan, and they will let you know. As soon as you do have a plan, then - in my experience - things will be easier to deal with because you then will have both a firm timescale, and firm goals.

SuzieW's advice above looks very good to me!

One other important thing to say: you are not alone. This group is very helpful, and contains many people who know what it's like. And all of the medical staff are on your side: everybody wants the same good outcome.

Best wishes for now.

Hi Suzie

Thank you for your help and giving me a a better understanding of the way it might go. I will try to remember to ask if I can record as at least then we can try to take in what's being said. I'm also sorry that we are all on this page but it is good that this is as you say by real people and not Google. Thank you so much,  take care and I will keep an update on here. Bless you 

Hi 

Honestly you are not alone on this scary journey.  There are many who are several years post treatment and I find that comforting.  It's going to be a tough road but there will be a lot of support available.  You end up with quite a team and in addition yo that there are several cancer support charities like MacMillan, Maggie's Centre, Fountain Centre in Guildford and several others.  Most have online support groups.  How is your husband doing? How is his eating and drinking? I've found that I have to remind myself to eat and drink so some days I do it on a timetable. I've taken to drinking aloe vera juice mixed with water. Lucozade or similar was recommended to me but it gives me heartburn.  

The other really important thing is that you take care of yourself too. I've been pushing my other half to exercise and eat better and get enough sleep. I'd noticed that he wasn't really taking good care of himself with the devastation and stress this diagnosis brings.  We sometimes go for walks together and its lovely.  This cancer stuff is all consuming so I start each day off listening to music and each day I remind myself that I am alive and well and that will be my focus. 

So sorry to hear the loss of your son. My husband was diagnosed in May and it’s such a shock. You can only take one day at a time. The waiting is the worst part, the uncertainty of it all. Just remember you’re not on your own. Please take care of yourself and your husband x

My Husband got diagnosed with Oesophageal Cancer in January 2022, he has had a course of Chemo and Radiotherapy. He is now on a ‘feeding’ tube and has also started a course of Immunotherapy, it’s all been a tough time on both of us, obviously for different reason. I don’t know how long the road will be, but good luck, try and keep strong.

Thank you for you reassuring words 

Thank you 

Hi he's on soft food as anything remotely solid gets stuck. So it's mashed up veg and potatoes etc. He's OK with dipped in tea biscuits. It's strange as even in this early diagnosis I feel guilty eating what was normal food only a few months ago. Thank you again suzie w