The roller coaster continues...

Hello friends,

So sorry I haven’t been around for a while. I do read this board daily on my phone but it is often difficult to post effectively on it.

You may recall that Brian had an aspiration of fluid which had built up in the capsule surrounding the liver. They removed 2.3 litres of green coloured fluid. He had also been suffering from waves of pain across the abdomen which was frequently relieved by the ‘gurgling’ which came shortly after. He was also battling swollen and painful legs.

To continue the story…

An ECG taken at the time of the aspiration revealed a suspected irregular heart rhythm but we were told not to worry about that. (In fact we totally forgot it!) It was put down to a possible electrolyte imbalance after drainage. The next day Brian’s leg was still swollen and generally painful with movement. It was also affecting his groin. The day after the leg appeared to be down a little but the calf was still painful. From the rear the difference in leg size was remarkable. In the afternoon there was more pain and vomiting which continued to the 4 Dec. Next morning he woke to see the left ankle and calf almost down to normal size but the thigh was still swollen.

At lunchtime the stomach pains became more and more severe and were accompanied with vomiting. His stomach was hard and distended. I rang the doctor who suggested getting him to hospital in an ambulance. He had a CT, X-ray and bloods taken. They also asked if he knew he had an irregular heart rhythm. We said no, because we had totally forgotten the previous ECG. After a few hours in Emergency he was admitted to the general surgical ward. At about 10pm the registrar came to tell us that Brian had a blood clot deep in the pelvis and that the liver lesions (what???) might be responsible for the pain and the refilling of the capsule (300ml)(new or old?) They gave him a blood thinner and said the surgical team would check him out in the morning.

They want to treat the blood clot with thinners first and have put any idea of surgery (although what surgery was never explained!) to one side. We were also told that the pathology from the fluid aspiration was “suspicious for malignancy’. That was the first piece of bad news for the day. We were completely shattered. An ultrasound and Doppler was scheduled for later in the day and the next bombshell arrived with the news that there were lots of clots in the left leg explaining the pain and swelling. (Way back in November our liver specialist was going to organise an ultrasound to check for clots prior to the aspiration but when we mentioned that the leg had gone down at that time, he seemed to think that clots could not be a possibility)

Despite feeling flattened and battered Brian attempted his own injection that evening and after I left the hospital, after 12 hours, we both needed some time to process the news. I was so stressed and overwhelmed. So yesterday the news was to leave the liver situation (again!) until there are symptoms. They reiterated that the fluid had malignant cells of oesophageal adenocarcinoma, but they are leaving that alone also. The leg should go down by itself eventually and Brian will inject himself with a daily 100mg dose of Clexane indefinitely. Further details now tell us that there is one very large clot from the back of his knee, up through the thigh and into the pelvis. We would never have known about this had we not gone to hospital.

Last night Brian had a very large sweat drenching the bedclothes – something he used to experience as part of dumping syndrome – but never this extensive. Just another thing to contend with. However, he got up this morning determined to try to be ‘normal’. He did some washing, walked up and down our stairs, had a walk around the local sports oval, a short nap, entertained an old friend who came to visit and then at around 3pm started to feel the stomach pains and nausea again. It is so hard watching him writhe in agony and not be able to do anything. The hospital gave us Oxycodone but said to try Panadol first to see if that was enough. It was!
The doctor at the hospital suggested that the cancer was constricting the bowel – not obstructing it. Apparently if you can pass wind – which would normally relieve pain, then the bowel is not obstructed. (That is a real fear for Brian). Silly us – we had not taken anything for the original pain thinking it might mask the symptoms of underlying problems. That turned out to be a blessing in disguise, because we now know what some of those problems are!

The cancer also caused the clots we were told. Who knew? Oh gosh – we are still not sure of what happens next. Is the planned resumption of chemo next year still going to take place? Is the malignant fluid from liver lesions (please no) or from the peritoneal metastases? What is causing the stomach pain and why is the stomach so hard? How long will it take before the leg is back to normal size? Will the clot break down? Will someone please tell us what is happening.

One minute he was having chemo for the metastases and it was holding the growth and the next minute we have a liver full of fluid, pains and nausea and large clots. We thought it was all unrelated but apparently not. Hopefully when we see the oncologist next Wednesday he can fill us in on the details of all tests and give us a direction for the future. I must say that we were often given conflicting information in the hospital which was monumentally frustrating.

In the meantime we wait again…

This all feels like a bit of a rant and ramble and I know I am prone to lots of detail, so forgive me if it doesn’t make total sense, but I wanted to get back here and touch base and have a bit of a purge. Emotionally we are both pretty good now. Let’s just get on with it.

Still thinking of you all,
Marilyn