I write this latest update in a reflective mood. That’s probably because its a little over two years ago since my diagnosis and nearly a year on from my life saving operation.
Towards the end of last year I had quite a fright. Whilst in hospital being treated for dehydration I was sent for an ultrasound scan on my liver. There were, apparently, some abnormalities that needed further investigation. The word cancer was mentioned. Could it have spread there as well? Thankfully a few weeks later a PET scan and a guided biopsy by ultrasound confirmed that there were more benign adenomas on my liver. Not more disease.
As my friend Kirsty and I celebrated over brunch, it dawned on me that finally, I was inching closer to a life where hospitals weren’t the centre of my world. One of the ways I’ve learnt to cope with my diagnosis is to not get ahead of myself and plan too much for the future. Now all of a sudden I could allow my mind to wander.
A little bit later I spoke to my brother to give him the good news. “It must be such a huge relief “ he told me “ You’ve had quite a year. “ All of a sudden, my emotions caught up with me. I found myself choking back the tears. “Yes” I answered “ it really has.” In that moment I realised there was no need to rush back into “normal life.” I may have negotiated through the majority of the physical obstacles put in my way but psychologically my mind was only just beginning to catch up.
Mr Rasheed had encouraged me to get away in the early part of this year. He wouldn’t need to see me for a couple of months. “Don’t go too far” he said “ France or Spain” he suggested. With that thought, a seed was sown. Perhaps I could go and stay with some family friends in Spain for a week in early January? I rang my Dad. “ Would my step mother’s childhood friends, sisters, Sonia and Hermoine, be open to me going out to visit them for a week?” I wondered. As it turned out, not only were they more than happy to have me, but they invited him too. This was perfect. I hadn’t seen my dad since the summer. This way I got to spend time with him, but also in a warmer climate. I couldn’t wait.
Sonia and Hermoine have lived in Spain for over 50 years. They live in the small town of Estepona about an hour up the coast from Malaga. They have forged a wonderful life over there and live in their beautiful villa on a hill overlooking the town. I think it’s a slice of heaven. We were blessed with the weather too. 22 degrees for most of the week. “ Don’t expect this every January, if you come back!”Hermoine told me. “This is quite unusual even for us!”
Our holiday was fantastic and we had the most wonderful of times, relaxing in the garden, eating breakfast and lunch in the sunshine most days, and exploring the surrounding area. Our hosts were so kind and did everything they could to make us feel welcome. As well as having 3 cats and 2 outside cats, they have 2 very cute dogs. Both of them have come from abusive backgrounds. Bourbon, the younger of the dogs is very shy but once he takes a shine to you, he’s the most affectionate of creatures. I wanted to put him in my suitcase and take him home with me!
Over the weekend we planned to take a road trip to explore the mountain nearby and the surrounding villages. However I woke up early on Saturday morning with stomach cramps. At first I thought I was slightly dehydrated, but in my heart I knew I wasn’t. Once up and about I tried to shake off the increasing cramps and focus on helping with the picnic preparation. I mentioned the cramps to Sonia and Hermoine but insisted I would be fine for our trip.
Unfortunately within twenty minutes of our drive, we had to turn back. The cramps were very painful. I realised that my stoma hadn’t really worked all day. It was lunchtime and it was unusually inactive. Sonia decided we needed to go to hospital. The nearest local hospital is in Marbella, half an hour away, so she and I headed there. I was a little scared because I didn’t know what to expect but also safe in the knowledge that Sonia spoke fluent Spanish.
We were seen in triage very quickly, and met a consultant shortly afterwards. An x-ray of my bowel was taken. We then met a lovely surgeon, who spoke a little English. He explained his plan to us after telling us the results of my scan. He told us that my x-Ray wasn’t too bad, but warned me that I may well have to spend the night in hospital whilst they waited for my bowel to start working again. He also told me they would use an enema to try to help get my bowel working again. I had no real time to process any of this because it all happened pretty quickly. I don’t think the enema really worked but it didn’t seem to matter because as soon as they had finished, I was whisked away to a room where non critical patients were observed. Sonia could only stay for a few minutes before she had to leave. Visiting hours had just ended for the day. It was now about 8pm. The day felt like a blur.
It didn’t take me long to realise that I was probably going to end up spending the night in hospital. Much to my initial dismay I realised that this would be in a reclining chair rather than bed. However I was in a fair amount of pain and discomfort and after being sick for a second time I passed out hooked up to IV fluids and anti-sickness drugs. When I woke up, a few hours later, I felt much better. The room was also pretty full. It had been half empty when I had first arrived. There was a fair amount of snoring and activity. However the room soon settled down. The lights went down and the whole room including the nurses went to sleep! I smiled to myself, this was certainly an experience! Thankfully I slept pretty well through most of the night and was really quite comfortable underneath my hospital sheet.
By early morning the room began to come to life again. Much to my amusement I realised there were 3 or 4 other British patients there, so it was a relief to share stories with them. More importantly, my stoma had begun to work again. My cramps were almost gone too. I rang Hermoine and she told me that Sonia and Dad would drive up to see me at lunchtime. Meanwhile the nurse said that as soon as the doctor came to see me and had spoken to the surgeon, I could go home.
Fortunately this all happened fairly quickly and about 2pm I was discharged and we were on our way back home again. My Spanish hospital experience had lasted for about 24 hours. I was so relieved to be out and it was such a glorious day too. We spent the rest of the afternoon relaxing in the garden enjoying the sunshine. The next day we were able to go on our drive which was fantastic. I was so glad we were able to go on our tour and it was a perfect way for Dad and I to finish our holiday.
The next afternoon we waved farewell to our amazing hosts as we jumped aboard our coach back to the airport. It had been a fantastic trip and I’ll be forever grateful to Sonia and Hermoine for all their kindness and hospitality. It really was the most fabulous holiday and better than anything I could have wished for. Unfortunately our trip home ended up being a little more challenging than I would have liked. As we approached the airport, it looked as if the surrounding area was filled with smog. It was a gorgeous day and seemed out of context. Dad seemed to think it was smoke from the burning of wood close by and I didn’t really give it too much extra thought.
However an hour or so later and after I had made sure Dad was safely at his gate, I headed for my gate. It was there that I realised it hadn’t been smog, but deep fog that now engulfed the airport. I noticed that my plane from Gatwick hadn’t even landed yet. A few minutes later we were told that our flight was delayed for at least two hours. I really could have cried. I’d been feeling slightly anxious about my journey home anyway, because I’d been having a few issues with my ileostomy bag leaking whilst on holiday. I just wanted to get home without any accidents and so this couldn’t have come at a worse time.
Ultimately I think I dealt with all of this pretty well. I spent most of the time with Dad because obviously his flight was delayed too. Although he had assistance I was worried about him. Fortunately there were some other really nice assistance passengers on his flight and they were looking out for him too. Around 9pm my flight was cancelled from Malaga but re routed from Granada. This meant that we had to travel up there on a specially charted coach. This all happened very quickly and I had to say goodbye to Dad not really knowing what would happen with his flight. I felt pretty emotional saying goodbye but the lovely people assured me they would keep an eye on him.
On our trip to Granada, I met a friendly English guy called Rob who now lives and works in Spain. He was so kind to me and made sure my case was safely on the coach and we sat together and chatted for most of the trip. It really helped my confidence. We eventually took off about 11pm. It meant, of course, that our flight would land very late back at Gatwick. I’d planned to catch the train home from there but instead booked a cab, and it was so reassuring that the cab driver was there to meet me when I landed. Finally at 3am I arrived home. It had been quite a journey.
The next day I found out that Dad had spent an extra night in a fancy hotel in Malaga and they flew home at lunchtime that day. I think he got the better deal! Although I would have preferred a more routine journey home, with the benefit of hindsight I’m so proud of myself because I proved to myself that I could deal with everything thrown my way whilst on holiday, even when I had concerns about one of my stoma bags.
About 48 hours after my return home my stomach cramps returned signalling the warning signs that my stoma was obstructed again. By the late evening a friend took me up to A&E of my local hospital. I didn’t really want to go but the pain was excruciating. Fortunately we were only there for a few hours. The treatment plan was pretty similar to Spain, but it wasn’t felt necessary to keep me even when my stoma had not yet begun to function again.
I spoke to my stoma nurses the following day which happened to be Friday. They told me that I was in for an uncomfortable weekend but that the stoma should start to work again. I was advised to keep to a soft diet and to keep hydrated. They were right and my stoma begun to work again by Saturday afternoon. It was a pretty uncomfortable few days but I got through it.
I recently saw Mr Rasheed and he told me the obstruction would have been caused by adhesions I have on my bowel. I’ve lots of scar tissue so sometimes food can get stuck and it’s a matter of my bowel disentangling. However he told me that the treatment for next time is stop eating and only drink a little. If after 5 hours my stoma does not start working, then I should go to A&E and ask to be put on IV fluids. This is because I’m at risk of becoming dehydrated. If the stoma still doesn’t work then an NG tube needs to be put in. At no point should I be given an anenema! He told me that in 5 out of 100 cases he may have to operate due to the obstruction.
Since then my stoma has been working well. I’m a little more wary of what I am eating. On both occasions I’d eaten pork which is quite unusual for me, so perhaps it’s a meat that’s a little too tough for my bowel now. And I make sure to chew my food properly. Another ongoing challenge has been my ileostomy bag that had begun to leak fairly regularly. This was a result of my stoma habits changing after The Whipple. It’s now much more active and effluent in form. However my stoma nurse has been brilliant and I’m now using a new type of convex bag, similar to the type of bag I use for my urostomy, and this seems to be much better. This is a huge relief and my sleep is gradually improving as I began to relax a little more.
The weekend after my trip to Spain I managed to go away again. This time it was up to Edinburgh to see my nieces and nephew and to attend a fantastic evening celebrating the 25th anniversary of the first Women’s Rugby international match played between Scotland and Ireland. It was a match I played in and one of my proudest moments. It was wonderful to see so many friends again and reminisce about that amazing day. Once again the trip went really well and it filled me with more confidence for further trips away.
Infact as I write, I’m very much looking forward to my next trip away. I’m flying to Dublin next month to receive a cap for that match back in February 1993. It should be a fantastic day as there are so many of us going to receive caps that were never handed out when we played. I’m so happy that I will be well enough to go. Although it’s been a really positive year so far, it’s not always been easy. But I’ve negotiated all the challenges I’ve faced and I’m really proud of myself for that. I remind myself that I’ve come so far and it puts a little more spring in my step.