Hi everyone, I am new to this group. 2 years ago my husband was taken really unwell. He didn’t feel well and his urine had turned dark and then we noticed his eyes were yellow. He had lost 2 stone in weight too suddenly. We took him to hospital and he then spent 2 weeks in our local hospital where they found he had a blocked bile duct. A stent was fitted and 6 months later he was much improved and had started to put on weight again. We were then put under the care of Kings college hospital Denmark hill London. They saw him 3 monthly for blood tests and scans. 3 months ago his last scan showed changes in his pancreas and we were told he needed an operation to remove his pancreas and spleen as he was showing pre cancerous signs. They hoped if there was any cancer then removing the pancreas would be the end of it. But unfortunately after the op we were told the cancer had spread outside of the pancreas and there were 2 small tumours that they couldn’t remove. So he will need chemotherapy and radiotherapy. We also had the added news that he would now be diabetic and be on life long insulin and enzymes tablets to do the job of the pancreas. Also life long antibiotics as he has no spleen. He spent 2 weeks in hospital and was then discharged. I thought it was too early as he was very weak. The night after he came home he had severe stomach pains and I rushed him to out local A&E. The next day he was blue lighted back to Kings. CT scans revealed blood collecting in his tummy. 8 days later he is still in hospital very poorly. He had another small surgery today to put a drain in to try to sort the problem out. In the week he has been back in hospital I have not had a single conversation with a doctor. There is a total lack of communication and I’m worried sick. I know the doctors are busy but surely they should take the time to have a 5 minute conversation with me to tell me what went wrong!! I’m not one to complain but this is really upsetting me. I feel like I’ve been left in the dark!!
Hi Lynn 63 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read all that you and your husband have been through recently and I can totally understand you wanting more information about what went wrong with your husband's surgery. As long as your husband gives his permission to his consultant you should be able to speak to the consultant to ask your questions.
The online community is divided up into different cancer support groups so I'm going to recommend that you join and post in the carers only group as you'll then connect directly with other carers to ask questions, share experiences and get support.
I'm not sure from your post if it is pancreatic cancer that your husband was diagnosed with but, if it was, clicking on the link I've created will take you to that group if you wanted to share experiences with others about this type of cancer. If I've misunderstood then clicking here will take you to a list of cancer specific groups which you can look through to join the correct one for you.
Once you've joined the group/s, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your husband's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
