My husband has terminal bowel cancer which is recurrent having come back roughly 2 years after he was given the all clear.
He has one large tumour in the original site as well as many secondaries in the bowel. To further complicate things he has a fistula between the duodenum and the large bowel so he can't have chemotherapy and surgery is out of the question. He is receiving palliative care only. He has a brilliant palliative care consultant at the hospital as well as a palliative care nurse linked to our local hospice. We also have a supportive GP and contact with the District Nurse team. This is essential for anyone in our position as without all that support I think I'd go under.
Day to day is a struggle. I work 3 hours a day from home and my boss has been marvellous. Being able to work gives me a sense of normality and helps us both focus on something else other than this dreadful disease.
My husband has good days and bad. Today is bad. He is having colicky pains in his stomach caused by the bowel contracting because of the tumour blocking the passage of waste. He also has pain in his rectum. He has lost a lot of weight, mainly because of the fistula as his food used to fall straight out of the duodenum into the large bowel, thereby by passing the small intestine and so not digested properly. He has recently had a stent fitted to enable food to bypass the hole, which has worked and so he is able to eat more and absorb all the right stuff. He spends a lot of his time in bed although he is aware and conscious. He does sleep a lot. He was diagnoised with a DVT at the beginning of December to further add to his sufferings.
He is a remarkable man. He is so strong and determined and has an amazing willpower. There are so many things he wants to do with his life, so many places he wants to go, that at the age of 41 he is determined he is not going to die, whatever the doctors say. And I will be at his side throughout it all, supporting him to achieve his goals.
