Our latest guest blog post comes from Dave who is probably better known to many as cavecrawler and is the author of his own blog, 'My Story-My Battle with Pseudomyxoma Peritonei (PMP)', which has been so helpful to so many Pseudomyxoma patients.
I have been very lucky throughout all that I have been through in the way that I have had a very strong support group around me. Tracey never left my bedside throughout (except when she had a bout of sickness and couldn't come), my parents supported us throughout, my aunt dropped everything and came to stay with the kids whilst we were in hospital, my friends really showed how special they are when the chips were down and even my employer also supported me throughout.
Very often when people visited us they would ask how I was and how I was doing but only a few would ask Tracey. I can only imagine the immense pressure that she was under throughout this whole experience when most of the attention focused on me. From the point that we first found out I know she was devastated but we both adjusted with time and came to terms with what was happening. Always with a brave face she has been there with words of comfort when I was down.
On the day of the MOAS (Mother of all Surgeries), it must have been awful knowing that such major surgery was being carried out and that the outcome wasn't certain but Tracey sat and waited patiently for the calls from the surgeon with updates on progress. Finally, after twelve hours of surgery and a few more whilst I was settled in ICU, she was allowed in to see me. It must have been both a relief but also awful to see me in such a state. Tubes and pipes coming out of me everywhere and ranks of machinery keeping me alive. I understand the visit was about 23:30 and only brief. I can only imagine how she felt at the time.
I know from talking to her that through those first few days she watched the machines and monitors like a hawk. Every time I was turned over in bed my heart rate climbed and blood pressure rose this would worry her and she would not take her eyes off the machines until I was settled and they began to return to normal.
I'm not the best patient when I'm ill. I can become quite introvert and conversation is difficult often we just sat in silence but happy in each other's company. I would also get frustrated when I became uncomfortable in bed and it seemed to take ages for the nurses to get help to turn me over. More often than not, I complained to Tracey and asked her to do it but of course she couldn't do it, it needed trained staff to move all the drains and tubes. She must have felt helpless.
Throughout all of this she was also separated from our children which I knew also upset her. Stuck between looking after me and the children I know at times she felt torn even though we knew they were both in good hands.
When we finally got home, of course it was relief and some of the pressure was lifted but new ones were added. Now there was no nurses around to help us and in the first few days it was difficult adjusting. Tracey struggled to sleep as she listened to my every movement worried that something may be wrong.
When I finally started taking walks it was Tracey at my side, holding my arm,holding my hand. Later on as I grew stronger and started walking on my own there was always a text asking if I was OK? Showing that whilst I was recovering well she still worried about me.
And now I'm back to work she still watches me like a hawk, looking for signs that I might be overdoing things ...
But now that I have recovered well and we are returning back to normal I know that there is still one thing on her mind ... the future. What does it hold for us? Will we have to go through it again? The yearly scans will be difficult times.
I am so lucky that I have such a strong and loving wife who has been there for me throughout. No one should have to be put under that sort of pressure or deal with the issues that Tracey has had to over this last year.
But the reality is that this goes on every day and that there are thousands of other people supporting cancer patients, wives, husbands, mothers and fathers and children. Putting on a brave face, offering support, keeping strong and then crying into their pillows at night. We need to not forget that they need support as all too often they are the unsung heroes who quietly get on with things while us patients get all the attention.
To read more of Dave's blog, please visit http://www.cavercrawler.blogspot.co.uk.
One of the most significant contributors to that sum was my parents. My mum in particular felt that she was to blame for my illness (clearly she was not) and felt hopeless that she could do little to help. She decided to organise a tea party to raise funds and she threw heart and soul into the event spending many weeks sending out flyers to friends and family, hand making some cards to sell at the event, running several sweepstakes and collecting raffle prizes. On the 23rd June 2012 the awful English weather shined and the tea party took place in my parents' garden with the whole family helping out, either washing up, serving cakes, selling cards and raffle tickets and making tea and coffee. There was a great turn out of people during the course of the 2 hours and in total (with donations coming in through the post from those who could not attend) we raised just over £1400.
