Saturday, 24 October 2015
“Scanxiety”; the wait for results and the final outcome...
I have seen a number of times now discussions on different forums about the length of time it takes for patients to receive their results after a CT scan. Historically I have usually crumbled and after a few weeks succumbed to the pressure and phoned the Hospital to obtain the results rather than await them to contact me.
In the period post annual CT scan, time spent waiting for results can be a scary one. As time passes and the days and weeks go by “Scanxiety” (scan-anxiety) as we call it in the PMP world sets in. This year having seen the discussions on the forums I was determined to wait and see for myself just how long it took to receive the results.
On looking into why it may take so long to get results I came across a piece by The Guardian. It states that there is a huge shortage of radiologists in the UK with only around 45 radiologists per million people. That’s nearly as rare as Pseudomyxoma itself!
A recent survey by The Royal College of Radiologists conducted on the 16th October found mixed results in NHS radiology departments. Whilst some faced no delays other has major issues. “It found that 81,137 X-rays and 1697 CT and MRI scans had not been examined for at least 30 days, even though the expectation in the NHS is that such potentially vital diagnostic tests should be examined within a week”
“ This reflects the national picture ...and about 6000 patients have waited more than a month for the results of CT and MRI scans” the college said.
I am not saying that this is the case with Basingstoke Hospital in any way, my care has always been second to none by the team there but it does give a picture of what is happening nationally within the NHS.
Week 1-Commencing Sunday 13th September.
Scanxiety level-0 (0=low-10 is high).
The first week for me is an easy one. You know that you won’t hear anything regarding your results and so it’s business as usual, it’s easy to compartmentalise the thoughts at this point. If you ask the staff at the CT scanner they will usually say that results take around 10 days to get to you. From history I know that it’s more like 3 weeks to a month. My experience has been if you get a letter through the post then generally its good news, a phone call-not so good. This is now my fifth annual scan since my first Cyto-Reductive Surgery (CRS) in 2010 and third since my de-bulking surgery in 2012. For now I am PMP free, with the results not coming anytime soon I am enjoying blissful ignorance.
However, life has a way of giving you subtle reminders that things are not all as they seem. Well meaning friends as “How did it go?” or “any news?” just a reminder that you may be existing on borrowed time so to speak. I have also had other subtle reminders. Not sure if it’s just the subconscious at work picking out things that you would normally ignore but this week but I was analysing a table of over 39K addresses in Excel and guess where the address was at the top of the table? ...Basingstoke! Also,on the way home I was parked at traffic lights in Bristol, the car in front was a Skoda. It was sporting a sticker in the back window advertising the garage where it was bought from; Jacksons of Basingstoke! Subtle reminders....!!
I guess subconsciously I must be thinking about it as I rang the specialist nurses this week to give them my new mobile number too...just in case...
Week 2-Sunday 20th September
Started the week with some fishing! Had an enjoyable day at my favorite haunt on Sunday 20th. Monday saw the start of the working week and I guess the possibility that I could hear something back from the end of this week. My behavior has changed slightly too. I am ensuring that my mobile phone is not on silent and always within reach, just in case... The guys in work asked me about it again this week, I replied that I hoped I wouldn’t hear anything as the weekend coming we had a family holiday booked in west Wales and I didn’t want any results to potentially spoil it. Work has been extremely busy and helps to keep my mind occupied so I don’t think about the results and “Scanxiety” remains low. However as the week has progressed the level has risen from a 0 to around a 2. Still low but definitely in the background.
Our weekend away was fantastic! We stayed at Pendine Sands and had beautiful weather. The resort was quiet and we walked in the sun on the beach on the Friday. Saturday was spent at Oakwood theme park where again it was quiet and we were able to get on any ride without queuing at all! We went on Megaphobia ; a giant wooden roller-coaster and Speed which climbed and fell vertically as well as loop to loops and barrel rolls! Sunday the weather turned and we spent the day in Tenby. We got through the weekend without any results and thoroughly enjoyed it!
Week 3- Sunday 4th October
Scanxiety level 6
The holiday is out of the way, back to the working week and into the danger zone. Finding out the results is now a very real possibility. My scanxiety level and that of the family too has raised considerably. Each morning I wake and wonder if today will be the day when I find out, it’s the first thing I think of. As soon as we hear the post being delivered we are on it checking to see if it contains a letter with the Basingstoke stamp on it?
Week 4-Sunday 11th October
Scanxiety level 6
Still no news. I am regularly being asked if we have heard anything now by friends and family? Mum and Dad have been away in the Mediterranean for the last two weeks and have text me twice asking if we have heard anything. The wait does not just affect me, it affects the entire family and its hard.
Friday 16th October.
Throughout this week I have had a cold hanging around. Throughout Thursday and overnight it got considerably worse with painful sinuses. Today I just couldn’t face work. I’d been up since the early hours and felt awful. I had spent the morning in bed and then migrated down to the sofa in the afternoon. Around 3pm the phone rang, Tracey answered, it was Basingstoke hospital. My heart sank, I think both of ours did. We knew this meant only one thing.
I spoke to one of the secretary’s who had advised that Tom Cecil wanted to see me in the out patients clinic on Wednesday 21st at midday. I agreed instantly. I asked what had been found on the CT scan and as she was not clinically trained she was unable to help. She put me through to Vicki one of the specialist nurses. It turns out that one of the tumour markers (CA19-9) was slightly raised and they had seen an area of fluid near the liver. Tom wanted to talk to me about the results.
I put the phone down just as Chloe walked in from School and into the turmoil that ensued. We were devastated. Jess was working; I had to pick her up. I managed to keep upbeat in the car and didn’t mention it until we were home. Everyone was so upset, I hate that the words I speak causes the people I love the most in the world so much pain.
We then proceeded to make the calls to those closest to us to break the news that once again Pseudomyxoma was back. I couldn’t ring Mum and Dad as they were still on holiday and not due back until the following Monday lunchtime. I made my mind up I’d go down directly after work on Monday and shatter their world for the third time...
Our weekend was a similar experience to what we have faced previously. Friday was complete turmoil once the news was broken. The knee jerk reaction is complete hysteria and upset, it always is. Then, the numbness sets in. You feel nothing but numb. For me it did really take the wind out of my sails. I couldn’t believe that recently I had actually allowed myself to look forward to the future and to make plans. Things had been going really well and I felt great. And now, once again we stood numb in the blackness with the future once again uncertain.
Wednesday 21st October-Outpatient appointment.
We made our way to outpatients at Basingstoke Hospital. It was busy but we were seen on time. Vicki called us in and we made our way to the meeting room and met Tom Cecil. We greeted each other with friendly hello’s. The team have been so good to me here and once again I found myself in their care.
We quickly got down to business. Tom explained that when the bloods are taken at the annual CT scan three tumour markers are taken. Two out of the three for me had come back clear but the CA-19-9 test had come back slightly raised. Any score above 35 is considered abnormal and mine had come in at 39. To put this into context he explained that they are used to seeing scores in the 100’s or even 1000’s. The test is also very sensitive and things like inflammation can cause an increase. On its own it probably wouldn’t have mattered much. However, there were also two area’s of concern on the CT scan. The first, near to the kidneys was around 7mm long and when they looked back retrospectively at last years scan they could see it on there. But it hadn’t changed in size at all in the last year and there was some uncertainty as to whether or not to is mucin. The second area was behind the portal vein that feeds the liver. This however had changed in the last year and is around 1cm in size.
The hepatic portal vein carries around 75% of the livers blood supply and is part of the portal venous system. The hepatic portal vein carries blood from the gastrointestinal tract to the liver which is rich in nutrients taken in by the intestines. The liver then removes any toxins that also may have been absorbed before being released into the systemic circulation by the hepatic vein.
The area is notoriously difficult to operate on we were told. It’s difficult to get at by the surgeon and may explain why the possible re-occurrence has happened where it has. If the portal vein is ruptured during surgery then there is a very real chance of the patient bleeding to death on the operating table.
The plan agreed was that a MRI scan would be done in the New Year. This would leave a significant amount of time between the scans to pick up any changes in size to the areas of concern. Also, an MRI scan would produce a far more detailed picture of what was going on and where exactly it was happening making it easier to assess what needs doing and how soon. Tom also advised that he would talk to a colleague who specializes in liver surgery to see what he thinks? Apparently he is often called upon for this kind of surgery.
We left feeling better than we had done. We now understood the detail and what the plans were. The news was better than it could have been and now we just have to wait and see what the MRI brings in the New Year.
But right now, once again I have cancer, I have Pseudomyxoma Peritonei.