Tricia’s experience of recovering from a Whipple’s procedure
Tricia, 57, was diagnosed with bile duct cancer in November 2016
Tricia, 57, was diagnosed with bile duct cancer in November 2016
I was diagnosed with bile duct cancer on November 17th 2016; the day after my 4th wedding anniversary. I had been feeling sick for a couple of months; had gone off food and started to turn yellow. I then started being sick, coughing up bile and losing weight
I had been feeling sick for a couple of months; had gone off food and started to turn yellow. I then started being sick, coughing up bile and losing weight.
A scan showed a blockage in my bile duct
I went to the doctor who sent me for a scan. On the day of the scan they admitted me to hospital saying that they thought a gall stone was stuck in my bile duct and needed to be removed. Unfortunately, it was cancer in the bile duct, the Ampulla of Vater.
I was told that if I could have an operation it would be major. I would have my gall bladder, part of my stomach and the bile duct taken out, plus the head of the pancreas cut off and maybe part of the liver, and what was left would be attached to the bowel. It was called Whipple’s surgery and was not an operation for the faint-hearted. I was told that I could have the operation and I needed to walk every day in order to build up my stamina. I did manage to walk every day and I believe it did help.
Recovery from the Whipple’s operation
I had Whipple’s surgery on Monday 27th February. There is no sugar-coating this; it was absolutely horrendous. I had a terrible time in the three weeks that I was in hospital and eleven weeks after. I had to have another operation within a week of the first one because I had contracted sepsis. This knocked me for six and I had terrible hallucinations on the pain killers. I had two draining tubes and a feeding tube coming out of my stomach, pancreas area and gall bladder area. The pain from the entrances of these was terrible and the painkillers didn’t seem to touch the pain.
When I came home from hospital after three weeks, I laid downstairs on the bed settee as I couldn’t walk up the stairs and I could hardly walk at all. I could do nothing but lie on the bed settee and watch the television, but mostly I slept all day and all night, which was perhaps a good thing. Because of what happened to me, I went into a depression and sometimes all me and my husband could do was hold hands and cry. Crying was also difficult for me because my tear duct had dried up as had my mouth. My mouth was very dry and painful. It took a good 15 weeks for my mouth to come back to normal. I drank lots of iced water and sucked on watermelon and apples.
Getting back to normal
I couldn’t eat very well and sometimes I was sick, but eventually, I could eat normally. Now and again if I overdo the eating I get sick, but otherwise, I’m fine.
I feel very much that I have been left to get on with it. I had a visit to the surgeon who operated on me at the end of April and had the tubes and feeder taken out. I had lost 2 stone in the hospital, but managed to maintain my weight. The surgeon said he didn’t want to see me again.
The oncologist wanted to see me to go through chemotherapy options, but it was not for me, so I’m not going ahead with chemotherapy.
When I was very ill and depressed, I said to my husband, that had I known it was so bad, I wouldn’t have gone through with it. However, today, 24th June 2017, I’m in a place where I can walk very well, eat very well and feel almost back to normal. I’m not taking any tablets. The only way I know I have had the operation is the scar and the areas I had the tubes in, which have healed really nicely. Also, the stomach area is numb and probably will be for some time, but I don’t really notice that as I’m going about daily life. I’m returning to work in the first week of July.
Support from family a friends got me through it
What really got me through this was my marvellous husband, family and friends; all very supportive. As I was on the bed settee not being able to do anything, a lovely friend, who is only 19 and who I used to work with, sent me an adult colouring book through the post with a set of coloured pens. I was so touched and just started to colour in. It meant so much to me as suddenly, I became interested again.
I started to look at colour and fashion. I needed more clothes as I had lost so much weight. Soon, I was up and walking better each day, even going into the town by myself and buying some new clothes.
I’m not sure what the future will hold, and I have read all the statistics and what people go through, and it is different for each person; but I’m taking each day as it comes and try to remain positive and do something each day.
I’m starting a choir on Tuesday evenings, learning a new language, writing a book and planning a few holidays. I’m so grateful that I have come this far, in what is a relatively short space of time after my operations.
It has been a really difficult time, but I feel that there is hope and I’m thankful to the surgeons in both of my operations who saved my life.
June 2017
Update January 2019
Tricia two years after her Whipple’s Surgery
It’s nearly two years since I had my Whipple’s surgery. I’m doing great, and I’m thankful for everyday that I’m here. It isn’t always easy and I do get tired a lot, but generally, I’m living life to the full and enjoying every minute.
I have had to leave work because it was too stressful for me, and I like to keep calm and please myself. I’ve taken up everything that I enjoy; writing, going to the gym, singing and I’ve just taken up playing the ukulele, which I would thoroughly recommend to anyone, because it is so joyous and uplifting.
The problems I face mainly are:
Pain inside – I’m told this is probably due to the scarring from operation. This is usually when I overdo things, like working in the garden, so I then have to go and stretch out.
Eating far too much. I do have to watch what I eat. I’ve put on so much weight, which in one way is a good thing as I had lost so much, but I find it is going on very quickly. If I eat too much and too many different things throughout the day, I can get very ill with pains and have to sleep and stay still for hours. It is such a horrible feeling, that it gives me an incentive not to overeat.
Depression. This can make me ill as I have a lot of self-doubts about death. I’ve been to the Maggie’s centre about this and they have helped me with counselling and art therapy, which again, I would thoroughly recommend if struggling from depression. I found the art therapy in particular, very helpful.
Throughout all the new things I’m doing, I have met many new friends. More than anything I am so grateful to my lovely husband who makes me laugh daily and keeps me sane; and to my family of sisters, brothers, nieces and nephews who give me so much support.
There are more days now that I forget I ever had Whipple’s Surgery, and that is a great feeling.