I'm Jae, 38 and from Kent. Until recently I could count the number of adult visits to a doctor on one hand.
In June, after presenting with swallowing problems to my GP in late May, I was diagnosed with incurable oesophagus cancer that had spread to my lymph nodes and, sadly quite extensively without me noticing, to various bones around my body. My prognosis is "many months, few years" in terms of my expected lifespan.
I'm on CX chemo to attempt to alleviate my symptoms and it seems like I'm being given another form of chemo later this month but I'm waiting for (another) "new patient consultation" to find out exactly what that is and why I'm being "upgraded".
My husband and I's way of dealing with the bad news has just been to go with the flow. I'm happy to co-operate with my medical team and go with whatever suggestions they have whilst continuing to live as normally as possible. My family struggled at first with our "laid-back" approach but they too now seem to have made peace with my diagnosis and once I'm more comfortable on my chemo plan I shall do my best to spend as much quality time with them as possible.
Right now I'm having to force myself to take nutrients and my tumour is large enough that solid foods are practically impossible. After 4 weeks of chemo I can tell my body is very much keen on not having any more! My appetite is practically nil, I'm very lethargic and mostly suffering from extremely bad mucus build up in my mouth and throat which is making me need to "clear it out" far too regularly. At the same time my totally unnoticed bone lesions have started to flare up and my pain meds are increasing in quantity and strength at an alarming rate.
Thankfully my medical team are extremely kind and helpful. My Macmillan support nurse, provided by my NHS trust, has been doing a lot of liaising with my oncologist, chemo team and GP to help get me advice and treatment on my symptoms.
So that's me, trying to keep it positive and navigating my way through chemo.
Thank you Jae for a truly amazing & inspiring account of your life since June. & am so sorry to hear about your diagnosis.
My lovely Hubby was told in March that his cancer had returned & he was given months rather than years …..(He was originally diagnosed with Oesophageal Cancer in Feb 2019 & was treated with chemo- surgery-chemo.
We have tried to deal with it in the same laid back fashion as you ….’going with the flow’. That’s not to say I don’t have my anxious moments.
Your positivity has been infectious & I wish you well with your treatment.
Suze
Hello Jae
Thank you for having the courage to share your story with us, you are very welcome here and I hope that we can be a source of support to your during chemo and the possible challenges that may lie ahead.
I am really sorry to read that your OC has spread to your bones, this is not something that I have any experience of, but I imagine the pain to be overbearing at times.
My husband has an adenocarcinoma OC Tumour, which had spread to liver, lungs and lymph nodes, diagnosed in May 2020, the treatment he continues to have fortnightly has so far been effective, especially since he was prescribed Herceptin, so I hope that whatever the new treatment is that they are considering for you will have a some great results for you.
I know that you have an assigned Macmillan nurse, but please remember that the helpline, here on this site is also available to you, their number is in my signature below.
Lowe'
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