Profile

KarenE

Regular user
Female 59 y.o.
ABOUT ME

I have been married to Andy for 23 years but we have been together for 33 years. We have 3 daughters 26,23 and 22.
Our journey started in September 2016. It was our first big holiday without the girls. We had been in Cuba for about 3 or 4 days when Andy had diarrhoea every time he ate something. Assuming it was some sort of bug or food poisoning he kept taking Imodium to keep it under control. He didn’t tell me at the time that he was also bleeding with the diarrhoea.
After returning home this continued so he went to see the doctor. He did a stool sample which came back normal. So they said no further action. He went back after a few more weeks and saw another doctor. This one gave him an elaborate explanation for his symptoms and said there was nothing to worry about. He was told to come back in a couple of months if no better. It just kept getting worse. Urgency for toilet up to 20 times a day with lots of blood and mucus. He was exhausted and loosing a lot of weight. In February 2017 he went back and saw another doctor who prescribed him antibiotics. She did reluctantly refer him to see a colorectal specialist which was a 6 week wait.
23 March 2017 - Specialist was immediately concerned.
29 March - Sigmoidoscopy confirmed cancer. CEA 22.2
20 April - Ct scan
12 May - MRI scan
16 May -Anterior resection
26 June - Meeting with oncologist. Was told 11 our of 22 lymph nodes affected.
MRI showed 6 liver tumours. He said he would refer to QE liver clinic.
18 July - started first of 12 folfox chemo.
28 July - Meeting with liver surgeon. He said there were three tumours the others were cysts. He wanted Andy to have 6 chemo treatments and do another liver MRI.
11 October- CT for chest, abdomen and pelvis.
16 October - Results via registrar who said that chemo had not worked, the liver tumours had not changed and there was a thickening on the resection site which probably meant it had returned in the bowel. Thankfully this turned out to be totally wrong as the scan had not been reported and she was trying to read it herself. We never saw her again.

Chemo had been going ok apart from tiredness. We hadn’t had the scan so kept chasing until the 8th chemo.
10 November- Andy had been particularly tired and breathless. About 6 in the evening his leg started to hurt. I phoned the hospital and was told to go in. Tests confirmed Pulmonary emboli scattered throughout both lungs. Chemo was stopped and he hasn’t had any since.
16 November- MRI liver scan
30 November- Liver surgeon said Chemo had worked really well. There are only 2 tumours left but they are so tiny it would be difficult to find them during an operation.
So now in limbo with no chemo or surgery.
They requested a further MRI in 8 weeks.
25 January 2018- liver MRI results on 8 Feb.
8 February- Results of liver MRI. Mets have now gone. Chemo carried on working.
12 March - CT for chest, abdomen and pelvis.
26 March - CT results are clear. CEA <2.
19 April - Liver MRI
3 May - MRI results are stable, which is confusing as they had gone in February.
2 July - CEA <2
6 August-Liver MRI
16 August- Two possible very tiny lesions in same place as before. One quite large cyst near gallbladder that they are not concerned about. Close monitoring with follow up MRI in December.
CEA 1.5
11 September- CT for chest, abdomen and pelvis.
24 September - CT results are clear, oncologist doesn’t want to see him for 6 months. Follow up MRI on Liver early December.
27 November- Liver MRI
13 December - clear colonoscopy
Liver results 2 lesions are still the same but they want to operate via open surgery.
24 December- hospital called to say the was no sign of cancer in the liver, operation is cancelled, next MRI in 6 months. I’m very confused.
15 March 2019 -CT for chest, abdomen and pelvis.
8 April 2019 - CT results. liver Mets remain stable and nothing else to report. CEA <2. Follow up liver MRI in June and full CT in September.
12 May 2019 - Liver MRI
21 May 2019 - MRI results. Cyct near gallbladder has grown but they are confident it is a cyst. Lesions could not be seen on scan this time.
16 September 2019 - CT for Chest, abdomen and pelvis.
30 September- CT results. Two small cysts are noted in the liver but everything else is clear. Liver Mets could not be seen. CEA <2.
7 November-Liver MRI
19 December-Finally got results after six weeks. No sign of residual metastasis.
18 March 2020 - CT for chest abdomen and pelvis.
30 March 2020 - Phone consultation due to Coronavirus. Results are NED. CEA is less than 2
12 May 2020 - Liver MRI
5 June 2020 - MRI results. No evidence of residual disease, some cysts are noted.
18 September 2020 - CT for chest abdomen and pelvis.
1 October- CT results all clear. CEA is still less than 2.
17 November- Liver MRI
7 December - MRI results. No evidence of disease in the liver.
18 March 2021 - CT for chest abdomen and pelvis.
29 March 2021 - 4 years since diagnosis. CT results show a tiny nodule in left lung. They are keeping an eye on this as unsure what it is. Everything else remains clear.
11 May 2021 - Liver MRI
28 May 2021 - MRI results. No evidence of disease in the liver.
5 July 2021 - CEA less than 2.
27 September 2021 - CT for chest abdomen and pelvis.
11 October 2021 - CT results show the 2mm nodule has increased to 8mm. Also might be something in right lung but unsure at the moment. Too late for tomorrow’s MDT so it will be discussed on 19th. We have a follow up on the 25th to discuss action plan.
25 October 2021 - We were supposed to have appointment for action plan today, but after many phone calls last week we found out that nothing had been arranged. I eventually rang PALs on Friday and it was finally agreed to go on today’s MDT but I have no idea when we will get an appointment to discuss things.
26 October 2021 -Registrar called and said they are going to closely monitor Andy with another scan in 4-6 months. Not happy as this doesn’t give us any specific plan.
8 November- face to face appointment with resistrar. 8mm nodule in lower left lobe still not 100% sure if cancer plus several others dotted about to small to identify. Managed to pin her down to a 4 month scan to reassess. CEA is still less than 2.
16 November 2021 - Liver MRI.
8 January 2022 - CT for chest abdomen and pelvis.
19 January 2022 - Finally after 9 weeks liver MRI says no evidence of disease in the liver.
14 February 2022 - CT results show there is a 7mm nodule in lower left lobe also 4mm nodule at the top of his lung. They said these are stable from the last scan so are classed as indeterminate. Next CT in July.
3 May 2022 - Liver MRI