Hi all,
Was just wondering if anyone can confirm what your experience of next steps and timelines will be.
My mum over the last six months has rapidly been losing weight and bringing up what I can only describe as a bubbly bile without any warning so she wasn't able to control it coming out, she had visited the GP as feeling fatigued who took bloods and told her to go back which she did and he said she had a low blood count but due to her bubbly chest he suggested antibiotics. She was therefore taking these but started to feel really unwell and tried to get another appointment but the suggestion was to have another blood test by this point she had fainted and was unable to walk very far at all.
Two days ago i went to see her as was worried, she was short of breath, and so so thin i was shocked at how emaciated she was. She was also complaining of a severe pain in her side so I called an ambulance, they subsequently took her to A&E.
In A&E they ran all the tests and were fantastic despite it being the busiest place I have ever seen. Bloods showed the same as the GP visit a few weeks prior i.e low white blood cells and from the doctor feeling her stomach said they were concerned so ordered a CT scan and chest xray. Chest xray didn't really show anything other than her oesophagus was lop-sided (not the right technical term used).
Then after a wait she had the CT scan results from an ER doctor saying the scans showed metastic oesophgeal cancer and they needed the cancer specialist to review and they would try and get my mum to a ward. Unfortunately after 20 hours of being in A&E a cancer specialist came and said the scans were not looking good but needs a PET scan and that would take a week or two to arrange and that there were no beds available for her so would be moved to a day ward then discharged her yesterday afternoon.
We didn't see another doctor really after that other than to say she could go home and was given discharge papers reading the papers it says the primary felt most likely from the distal oesophagus which has been partially imaged. There is extensive omental/peritoneal and mesenteric deposits as well as subcutaneous/muscular deposits with the right flank. Indeterminate liver lesions and adrenal lesions but these would be suspicious - I am not really clear what any of this means but I guess they didn't say half of this to us as they want to run more tests and scans etc
Does anyone know what happens now - I guess we wait for an appointment, does anyone know roughly how long that would take?
Feel like she is wasting away a little bit more each day
Left in limbo and feeling a tad frantic......
Hi. What a worry for you. Has your mum been seen at a major hospital? If so, I would suggest you ring through and find out who the specialist nurse/nurse practioner is for Upper GI and talk to them. They are normally the point of contact and coordinator for patients with this type of cancer. Even if your mum has not yet reached their list they should be able to help with your questions. Hope this helps.
Hi
I can't see what's happened to my reply so apologies if I end up replying twice.
I'm so sorry that you are on this horrible and scary journey.
If suggest urgently speaking to the GP to make sure the referral has been made urgently to the relevant oncology team. I'd then call up that team to make sure that they've received the referral and you ask them about waiting times, etc. I'd also suggest speaking to your GP about meds to manage the symptoms e.g. a prescription for lanzoprozole fir the stomach acid. This be what's causing the bubbling sound in her chest..I'm not a medic but that's what I experienced. I'd also suggest getting their advice on meal replacement milkshakes. I remember swallowing being hard and my appetite being small. You can get these sorts of milkshakes in various pharmacies, etc. Your mum need nutrients. Food like bread or meat or rice will get stuck. Best go for pureed and food with sauces - all full fat. Hopefully having something like lanzoprozole will also help to settle her stomach so she can find eating easier. I've also discovered vitamins that I can spray into the inside of your cheek. - Best check this out with the GP or nurse.
The PET scan will be very useful is seeing the tumour, etc. I'd check with the radiology department about the timescales, etc. to make sure she's definitely on their waiting list. I'd urge the medics to kit wait for this scan before referring to oncology
The waiting and not knowing is horrible. Definitely need a clear plan. Remember there are various helplines like Macmillan you can call. I found this journey a very scary and bewildering one. I met some wonderful people who advised me along the way whom I'm very grateful to.
Sending positive vibes.
Take care
Suzy
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