Veronica

About 13 years ago I went down with Epstein Barr Syndrome which left me with symptoms of chronic fatigue (extreme tiredness) and intermittent bouts of chronic stomach pain. The stomach pain was diagnosed as IBS (Irritable Bowel Syndrome), which I tried to live with but the pain got worse after my 65th birthday in 2009 and I began to lose weight.

My energy levels plummeted and I could barely walk. I was found to be severely anaemic and was sent for further investigation. I had 2 endoscopies and 2 colonoscopies, a barium meal (a test to look at the oesophagus and stomach) and a scan at my local hospital.

Afterwards I was told that I needed surgery and that I was being referred to a specialist hospital. It was discovered that I had a huge ulcerated, doughnut shaped growth in my duodenum (small intestine), which was obstructing the pancreas and that the ‘hole’ in the middle of the intestine was gradually getting smaller and the ulcers were intermittently bleeding.

Preparing for surgery

My husband drove me to the hospital, but because he is squeamish I went in on my own to see the surgeon. The surgeon drew pictures to explain the operation and tell me how serious it was. He gave me dietary advice to build me up, and advice on the importance of getting extra fit to improve my chances of survival.

I was shaken and asked for time to think about it all, and was told that they’d already found suspicious cells in the biopsies and that I didn’t have time to think. In complete shock when I left the room, I walked down the corridor looking for a chair to sit on and ended up going to the loo (the only place I could find to sit down before I fell down). I desperately tried to stop shaking and compose myself before I found my husband and gave him the news.

The next 10 days were a blur. I visited my heavily pregnant daughter and family, spent time with my mother, brother and sister and spoke on the telephone to my daughter who lived too far away to visit. My husband took me to change our Wills and I saw my parish priest to organise support for my family in case I didn’t come through the operation. I wrote letters and left special gifts for my grandchildren and my family. I made a picture collage of all my loved ones and my husband had it laminated so that I could take it to the hospital with me.

I walked alone in the countryside for 4 miles a day (2 miles each morning and another 2 in the afternoon) to prepare for my surgery. As I walked I talked to my body and sang made up songs to keep me going. Don’t ask me why I did that, it just seemed the right thing to do at the time. I realised many months later when reading a magazine article that I was instinctively chanting mantras as I walked and I really do not know where that came from!

Having surgery

On September 31st 2009 I had a Whipple’s procedure. During the six and a half hour operation the surgeon removed all of my duodenum, all of my gall bladder, part of my pancreas and most of my stomach.

On the day of my surgery I was given an epidural before the anaesthetic. When I came round my first words were “I made it”. I lost count of how many tubes there were protruding from my body and I had over 40 stitches in the huge scar which ran across my body. I was able to control my own pain relief after a few days in intensive care.

The medical staff were great and my surgeon visited me every day. He didn’t have a great sense of humour, but the nurses told me that they would have chosen him if they’d had my surgery. I particularly liked the Royal Navy nurses who worked on the wards, it gave them the opportunity to nurse women instead of their usual male patients and I enjoyed their banter and efficiency.

I was discharged after 14 days because the wards were inundated with chest infections and my surgeon said I’d be safer at home away from all the bugs. The 2 hour journey was no picnic but my lovely husband brought me lots of soft pillows to cushion the weight of the seat belt.

Recovering from surgery

Once home I rang my GP surgery as instructed to ask them to come to the house to change my dressing, and I was told they didn’t do home visits. After my scar healed I didn’t go back to the practice unless I absolutely had to.

I’d been out of hospital a month when my Mother had a stroke which left her paralysed down one side and she died ten months later. I visited her every other day but felt sad that I was never strong enough to help with her personal care.

It used to amaze me when people assume that because you are walking and talking you are completely well again, and then I smile to myself and remember that even I thought I’d get completely well again once.

Ten years on

So here I am 10 years on and incredibly thankful to still be here to tell the tale – so many of my friends from my support group haven’t made it. I now realise that I will never get “back to normal” but that THIS is the new normal for me.

I have lots of good days, and some bad days, and have learned to pace myself all the time. Whipple’s surgery left me with digestive problems and I have not been able to do as much as I used to before surgery. On bad days I stop myself getting bitter by knitting scarves and hats for the homeless. It helps me feel as though I’m doing something useful instead of just being inactive. On good days I go out to meet my friends and relatives, I really enjoy being in their company and laughter really is a wonderful medicine.

I constantly count my blessings, that I live in a beautiful part of the country and that I met my wonderful new granddaughter, born 9 weeks after my surgery. Life after Whipple’s may be challenging at times but it is still sweet.

January 2020