Where to start!

Hi Jason

Welcome to the forum, I know it takes a great strength to write your first post on here and I wanted you to know that we hear you and we are here for you.

I am sorry to read of your Mum's Oesophageal Cancer diagnosis, the waiting on the results may be a very difficult time for all of you, and it is important I feel, that you are all open and honest regarding your feelings as much as possible. 

There are two different tumour types my husband has the adenocarcinoma, he has been advised that he also can not have surgery mainly due to the secondary cancers we believe, but hopefully Mum will not have any of these.

My husband is 52 and was diagnosed just under a year ago, he was very ill... We have written a blog, which may give you and Mum some ideas on what you can do whilst waiting for the result outcomes, you can read the start of it here if you are interested 

This is a great forum for help and advice, if Mum, you or your partner have any questions please feel free to reach out here, we will do our best to help answer what we can.

Mum can also call the advice line in my signature below if she would like to speak to someone.

Best wishes sent to you all

Lowe'

Hi Jason,

I'm very sorry to hear your story. I've had both parents with it, 15 years apart.

I am quite annoyed to hear the GP didn't push for an endoscopy. Six months before a referral is just wrong. They should know this was potential OC because of the difficulty swallowing. So in essence, they have let the tumour grow by being tardy.

I'm just wondering if your poor mum has been offered Radical Radiotherapy as an alternative to chemo/radiotherapy. My mum was offered this combo but the oncologist thought it may be too harsh. Radical is known as curative, & if it hasn't spread it seems to be worth asking about. Yes, after this RR mum had & still has side effects. But 20 treatments over 25 days destroyed the tumour & the surrounding rogue cells. Chemo& radio combined is going to be much harsher regarding the after effects.

The RR aims directly at the centre of the tumour to within 2 mm's. A mask is made to protect the face. And 3 pinhead tattoo marks are made so that the machine can be absolutely precise with its aim, lining the patient up on a special bed. And RR treatment does not hurt 1 iota. The effects start around 2 weeks post treatment. But they can be managed with a plethora of medications.

Can I give you the best advice I was given?

Get a GP referral for a hospice nurse to be assigned to your mum. The word hospice isn't like it used to be, it's for ongoing help, advice, care & any assistance for your workload. The nurse will visit you on a regular basis & evaluate your mum's situation. They can then write out a script for any med's that they think your mum will benefit from. And to top it all, they give you their personal phone number if you need to talk, & at the weekend they operate a 24 hour hotline. Therefore you have total cover. Their aim is to make mum have a good quality of life. They are a godsend.

Regarding swallowing food, has anyone mentioned Ensure liquid food. 200ml bottles of weight & nutrition sustaining liquid. Your mum would get all she needs from just 4 bottles a day, as you say she is small in stature. Contact The Abbot Nurses for all feeding requirements. It's free to your door & they usually give 90 bottles, you can choose the flavours too. The hospital dieticians can get this ball rolling.

Again, I implore you to get that hospice nurse, you'd be amazed at the wealth of knowledge they have.

I hope this triggers a few ideas for you & your mum, & never be afraid to ask anything on this forum.

Best wishes Jason, & your mum,

Graeme.