Living with uncertainty
This year has been dominated by husbands poor health. He had a T3 (N2)tumour removed from his jejenum, but cancer remains in lymph nodes that could not be removed due to their location, near a major artery that serves the bowel. This cancer is terminal, and as yet no further treatment options are available. The cells are poorly differentiated and despite having a large tumour providing a good size sample they are unable to diagnose the cancer. The oncologist has said, that it could be a secondary cancer and that they have missed the primary. I hadn't realised that this could happen but the body's immune system may have done its work and got rid of it! We know that this is a very rare cancer. He had surgery on 02/07/19 and is due next CT scan on 27/08/19 to try and determine how aggressive this may be. Apart from all of my extensive research online ( mainly done before surgery while we were waiting for scans etc) we know nothing! and lack a diagnosis. Surgery was performed as an emergency although not acute as although the tumour was large his bowel was not yet blocked and bowel movements were generally all ok. Pain, almost being to scared to eat , weight loss, tiredness, anaemia, sweats, high temperatures and nausea, excessive burping, were his main symptoms. Surgery has improved this and although no one said, from my research I knew that this surgery could actually be considered as palliative care. Medics/surgeon had an idea from MRI and Ct scan that lymph was infected in a place they were unlikely to be able to remove- it was hinted at. So since going to the GP early February we have been in the waiting game of uncertainty, whilst trying to get our heads around that this is end of life without knowing if its weeks, months or a few years. The honeymoon of symptom free after surgery is already passed, he is extremely tired and can experience incredible night sweats, where he is absolutely drenched are occurring again along with spikes in his temperature. Thankfully we can still enjoy a meal together which prior to surgery was a loss in our lives, as we really enjoyed our meals. Sleep eludes me, we are trying to make memories and everything in me wants to go away with him and have as much fun as we can. We are both 63 yrs old and recently moved to have some life for ourselves after raising so many children and grandchildren. We were still working ( though both of sick at the moment) going back to work for me is an issue, not that they are not being supportive, but this uncertainty makes planning so hard. If I am to be on my own, I need my job, financially and for my own well being, work colleagues are a source of friendships especially in the light of moving to a new location only 12 months ago. Has anyone here experienced such prolonged uncertainty?