Mr A = my surgical consultant (bowel
specialist)
Dr B = my respiratory
doctor
GP1 = first GP at my doctors'
surgery
GP2 = second GP at my doctors'
surgery
Sections in red are key points to help
skim readers
DVT in my calf
When holidaying in the south of France (July 08) I fell onto rocks, my shins were badly cut and bruised. I was doing a lot of driving and my right leg (accelerator pedal) would be almost motionless for a few hours. The calf of my right leg started to swell up, I waited the few days till I got home and went to Crosshouse Hospital A&E. After an ultrasound scan they said that it was a DVT (Deep Vein Thrombosis) in one of the large central veins within my right calf. So because of poor blood circulation my leg had become swollen. The doctors didn't’t think the damage to my shins would have caused the DVT. I was put on a three month course of warfarin. This was to thin my blood and stop the clot growing any bigger. The body’s systems can then break down and dissolve the clot.Towards the end of the course of warfarin in October I started getting the odd bowel motion that had some blood in it.
After finishing the course of warfarin there was no check to see that the
DVT was gone. It is just assumed that this treatment has sorted all the
clots. I continued to get a bowel motion or two with some blood
every week or so. I was in the process to arrange for a check up with my
consultant Mr A (visiting my GP and then getting an outpatients appointment,
unless I could show something that I needed urgent attention I expected this
appointment to be in a month or two, then the colonoscopy would be arranged a
month or two after that). When I received a kit for the bowel screening
program in the post I thought this might be quicker and took advantage of it.
This is a program where the at risk category (possibly those over 50 with
a bowel disorder) is sent a kit so that they can take a sample of a bowel motion
and post it back for analysis, those that have blood detected are asked to
arrange for a further examination (a colonoscopy). I completed it and as the
sample I sent them contained blood they contacted me to set up a colonoscopy
appointment. I went for the colonoscopy in early
November and Mr A came to see me after the examination and confidently told me
that it was all clear. I was still in the recovery ward and being a bit
woozy at the time because I still had the effects of the sedation I never asked
any questions back.
Existing condition - Crohns Disease
I have been diagnosed
with crohns disease and people with this condition have a tendency to bleed but
this was the first time I ever had any noticeable bleeding. When I was 19
they said I had ulcerative colitis and I needed to have my large bowel removed
because it was badly ulcerated and swollen. I would have died if they
hadn’t removed it, and I very nearly did die in the recovery from this because I
was so weak when I had the two operations required. Often people are given
a stoma (the small bowel is taken out to at the front of the abdomen and waste
is collected in a bag). But I was given a ileorectal anastomosis which is
where the large bowel is removed and the small bowel and is connected to the
rectum stump. About 10 years ago I was told that really what I had was
crohns disease which in some people can be very debilitating. I was
diagnosed with crohns because at that time I had developed a fistula which
exited at the front of my abdomen, this cleared up and disappeared itself just
as quickly as it appeared. Whatever disease I have it is a bowel disease
of some sort but it has been pretty mild for me and I felt that through diet I
managed quite well and led an active life. Anyone who has Crohns
disease has an increased risk of developing bowel cancer and anyone who has the
type of procedure I have had has an increased risk at the site of the ileorectal
anastomosis. Regular check ups are recommended.
Chest pains and the discomfort starts
I started going to
the gym in November and an exercise I was given was rolling over backwards
on a big ball. After this exercise I was getting pains
in my right lower ribs which I put down to stretching muscles I had seldom used
before, I tried to carry on exercising thinking this would go away but
eventually I stopped this exercise altogether but the pains continued.
1st Hospital stay and diagnosis of lung PE’s
The pains
continued and then my breathing began to change, it often became uncomfortable
to lie down and sleep because this would press on my chest cavity and ribs I
decided on the weekend of 20/21 Dec that I should go to my GP. On 22/12/08 I
went to GP1 who I explained the discomfort and the exercise I had been
taking. I also explained that I had just had a colonoscopy and she looked
up the results on the system. She said yes its all
clear but he did find 3 hemorrhoids, I said they didn’t tell me about those, and
I thought that was strange. On weighing things up she decided to send me
to Crosshouse Hospital A&E to have it the chest pains checked.
Blood samples taken at the hospital showed that my D- Dimers were
high, this test gives an indication that the body could be in the process of
trying to dissolve clots. I had a chest X-ray (which they said was
fine) I next got a VQ scan (this is a type of CT scan where
they inject a radioactive substance, the scanner then builds up a picture of
where it reaches in the lungs). From the results of this they said I had
clots in both lungs (Pulmonary Embolisms PE) . They thought
this would have been related to the DVT in my leg as this is a common source for
a PE. Parts of the DVT break off and travel through the bloodstream to get
caught in the lungs which act like a filter. Dr B put me on Fragmin which
is injected and thins the blood without the same risk of bleeding. He was
very confident that this would dissolve the PE’s and that I would get the full
use of my lungs back without any damage to them. He did think that I may
need to be on blood thinning medicine for life as I seemed to have a tendency to
clotting. He also took blood samples to be sent off to other labs to carry out
other less common checks for clotting disorders. These results were
expected to be ready for my outpatient’s appointment on 16th Jan. They seemed to think that I should be in much more pain than I was
they said I should be getting sharp stabbing pains in my back. All
I could say that I was in a little discomfort, more to the front and side of my
ribs and that my breathing was restricted a bit. Paracetamol made me more
comfortable. I got out on 24th December.
Not improving with the Fragmin treatment and 2nd hospital stay
In the following days I didn’t seem to be getting any better
and I started to get other pains which seemed to be at various spots at my right
chest. Early in January the pain got quite a bit worse, I had one dull
pain at the top of my right side front. I went to A&E, that night and
next day and after being transferred to Dr B’s respiratory ward the next
day I was told that it was likely to be the clots breaking up
and smaller parts then traveling to other more sensitive parts of my
lungs. That seemed logical to me and I was sent home.
Outpatient’s appointment
I went to my outpatient’s
appointment on 16th Jan, Dr B at first he thought I needed a blood transfusion
because I looked so white. After further checks he
thought I was probably ok but he was concerned about the bleeding and decided to
refer me to Mr A to have this looked at. He felt the hemorrhoids could be
sorted if this was causing the bleeding. He also said that he would
arrange to have an ultrasound done on my heart because if I still had clots
restricting the flow of blood in my lungs this would show up as my heart being
under strain. He also arranged for a chest X-ray that afternoon and also
for blood samples to be taken. He said he would phone me with the
results
19/1/09 I called Dr B’s secretary to find out about progress on the tests taken on the 16th she said that she was doing a letter to me at the time that would be coming out to me.
My email to Dr B on 20/1
“I saw you as an outpatient last
Thursday, and you were going to discuss my crohns with Mr A. I wanted to
contact you because there are some other factors which I thought may be
relevant.
On Thursday my face was very white and you initially thought I needed a blood transfusion because of rectal bleeding due to my crohns. I did have 2 bowel movements the previous day which had lots of blood so it seemed likely that this was the cause. However since Thursday I have only had very slight bleeding on Sunday (barely noticeable) yet I have remained white. I therefore feel that while the bleeding could have been contributing to my lack of colour on Thursday I do not feel it is the main problem. Maybe the blood samples taken on Thursday will support this. About 5 or 6 years ago when I last had a bout of severe diarrhea I went this white/ yellowy colour too.
I have continued to have a dull pain in my back at my right side about 5” below my shoulder. Some nights I can’t sleep at all because lying down seems to put pressure on the source of the pain. My chest cavity seems to be pressed just by the weight of my body no matter what way I lie.
This pain
has got worse since I was diagnosed with clots in both lungs 24/12.
However you seem to be saying that it should be a sharp pain that accompanies
clots. So it seems either I am experiencing the pain differently or there is
some other issue. I understood that the Fragmin would have had some effect
by now, but I have more pain and my breathing isn’t so good as my hospital stay
24/12.”
The arranging of heart ultrasound, the appointment with Mr A and the CT scan
20/01/09 Dr B’s secretary called at 4.30 to say Dr B had
read my email and said that the blood tests taken 15/1/09 showed that I didn’t
need a transfusion. She said that I had been referred to Mr A so an
appointment would be coming out to me. I expected this to be in the next
few days. She also said that I was to get an ultrasound of my heart and
this would be posted out too.
23/01/09 I called Mr A’s secretary to see what was happening about an appointment. She went into his office and said that the letter was there with my notes. She said that it was a routine appointment and that an appointment would be set up in due course. I explained that this was not routine to me and I have clots in my lungs and Dr B is waiting for Mr A’s decision or action before he arranges another appointment. She said that she would do her best to get me fitted in as soon as possible.
23/01/09 Called ECG dept – they had a card for an ultrasound scan but said that all appointments for next week were booked and it would likely be the following week.
29/01/09 I called Mr A’s Secretary said that an appointment was arranged with Mr A for 11/02/09 at 2pm.
Blood and X-ray Results
30/01/09 Dr B called me to inform
me of results
Blood - T4 mid, Blood count marginal at 11.2,
Vit B12 Ok, Folic acid OK, Liver Ok, Calcium OK (these results are from memory
of our discussion so this could have errors)
The X-ray
shows a denser area in my lung but could be nothing but the X-ray department are
recommending that I get a CT scan that would show in greater detail what this
was. So he was recommending that I get a CT scan including my bowel
area. This CT scan could show up inflammation of the lining of the
lungs. He was going to ask for this scan urgently. He explained that
what I could be experiencing was plueritic pain, he said the clots could be
dissolved but in the area’s where they were inflammation could be caused to the
plueritic lining. The lungs are contained within 2 membrane layers that
have a fluid between them. This separates the lungs from the ribs, when
this is infected it is normally from chest infections etc (plueracy) But
it can also be inflamed from clots. He also said that there are lots of
other things that can cause pain in the chest that could be nothing
He said
to call his secretary to let her know when I had the scan so that they can look
out for the results
2/02/09 I called Dr B’s Secretary who said a CT scan had been requested urgently. She transferred me to the X-ray Dept. The X-Ray Dept said the request is being looked at just now and an appointment letter will be going out towards the end of the week and the appointment should be within 2 weeks. I got an appointment for Thursday 12/2/09
2/2/09 I had had a bad weekend and hardly slept so I went to one of the GP’s – GP 2 who prescribed 20mg temazepam to help me sleep better, pain killers – Solpadol (30mg codeine and the rest Paracetamol) He also gave me Quineen for the restless legs I had.
Mr A’s Appointment
11/2/09 Wed
He didn’t see me it
was one of his colleague’s, he decided that they would band the hemorrhoids and
have me in 2 days before to monitor my blood. (banding the hemorrhoids removes
their blood supply and they drop off) He gave me a rectal
examination and said that I am not bleeding and have no signs of
bleeding. He asked me if the examination he was doing was
painful. I said it is no more painful than I remember this examination
being in the past. I think he thought that if the hemorrhoids were
sensitive they would likely also be bleeding easily. As they didn’t seem
worse than normal I think this pointed out that the hemorrhoids were not causing
the bleeding
CT Scan
12/2/09 I got the CT scan. It was “with
contrast”, – this means that the bowel and stomach will show up in sharper
detail so I had to drink about 1 litre of contrast medium over an hour. I
emailed to Dr B’s secretary to let her know I had had the tests
New Pain
13/2/09 I felt good but while
out at a job a pain developed a sharp stabbing pain in a new place -
lower down in my back on my right side. This seemed like the description
of the pain that should accompany a PE. I only had to do light manual labour and
stretching so it seemed strange that this should happen. By the time I
drove home it was quite sore. I had a bad weekend.
CT Scan Results
16/02/09 Monday
I called Dr B’s secretary
to see if they had got the results and to explain that I now had a new pain that
was causing me a lot of discomfort and that I had had a bad weekend. She
said there were no results on the system yet but she would keep checking through
the day. Later in the day she called me to say that Dr
B had the results and wanted to arrange an appointment on Tuesday to discuss the
results.
I had also set up an appointment for GP2 to see if he could offer anything else for the pain. I saw GP2 at about 4.30, he said he would be unable to tell whether this was a new PE and was going to send me to A&E. I also said that I had an appointment for Dr B tomorrow to discuss the results of the scan which were now available. He said he would be able to look them up on the system. He looked at them and then said that he was sending me into A&E and called them and arranged it I then asked him what the results show. He said “I am sorry to say that you have cancerous lesions in your lungs and your liver and there is something abnormal at your bowel that this has probably originated from”.
I went into hospital and on the ward when I saw a doctor later that night I explained what vague information I knew, and that I had an appointment with Dr B tomorrow. She said she would call his secretary first thing in the morning.
17/02/09 Tuesday
Dr B came to see me later in the
morning. He explained that he was surprised at the results of the
scan. He explained that it showed a number of nodules in my lungs, my
liver and in the peritoneum in front of my bowel.
He said there also looked like an abnormal area of thickening in my bowel where the small intestine joined onto the rectal stump. He said it’s likely that this is a bowel cancer that has now spread. He also explained that this is not operable and that chemotherapy might be the only option but this will depend on the type of cancer it is.
After it was known what they were dealing with the MDT (Multi Disciplinary team- experts in various fields) would meet to discuss the best way forward. We arranged that we would meet again later in the afternoon to explain it to my wife. She was going to attend the appointment that had already been set up for the afternoon. So I contacted her for her to go to the ward. My daughter (who is a an FY2 doctor) called me at about lunch time to ask how I was, I told her the results and she said she wanted to come down from Glasgow to be at the appointment too. We all felt that Dr B had explained this very well with an excellent manner. Dr B said that the next stage is to find out exactly what type of cancer we were dealing with. This might be easiest done by taking a biopsy of the liver. He said that he would call Mr A to discuss it.
Biopsies
18/2/09 Wednesday
Mr A came
to my hospital room. He said that the colonoscopy he had done previously
was clear and that they would probably do a liver biopsy under local
anesthetic. He said he wouldn't be able to do this the next day on
Thursday He also said they would want to have a look at my bowel
again.
19/2/09 Thursday
Mr A’s colleague called on me in the
morning he said they wanted to examine my bowel using flexible
sigmoidoscopy. This was to be done later in the morning. This is a
technique where a camera can look at the lower part of the bowel. It is
not capable of looking very far up the bowel as a colonoscopy can. The
results are displayed on a Monitor and I could see three samples being
taken.
Later in the day Dr B visited and when I said I had 3 biopsies taken he said there should be a report and went to read it. He said they would need to wait for the tests to be carried out on the samples; this would likely be Monday 23/2. He said a liver biopsy is now not necessary and that I could get home if I wanted. He said to call his secretary on Monday to see if the results were available.
I called 23/02/09 to see if the results were in. She checked and said they were but as these are by Mr A’s team she couldn’t tell me what they were. She said she would print them out and give them to Dr B who would probably call me. At 4.45 he hadn’t called so I called his secretary who said he had looked at them and he will call me later. I was at work so I gave that number. I left at 5 to come home but thought if they didn’t get an answer they would call me at home as they have that number too. There were no calls at home either or missed calls.
24/02/09 I called and Dr B’s secretary said he would call sometime today.
Dr B called 10am. He said the biopsy taken was negative for being cancerous, but it was indicative that there was active inflammatory bowel disease. He said they would now need to get a liver Biopsy and this was arranged for Thursday 26/02/09. I asked him if this increases my prospects at all and he said it didn’t, It’s just that we don’t know exactly where it has come from. It is still likely to be the bowel, its just that they have sampled the wrong tissue. He said that from the liver biopsy they will be able to do tests to determine where it has originated. Because the biopsy has been taken of the wrong tissue it means that this has delayed any possible treatment by a further week. If this biopsy was not known for certain to be of cancerous tissue the Liver biopsy should also have been carried out too. The consultant should have known from my notes and from me telling him that I do have IBD, so parts of my bowel are to be expected to have areas of inflammation.
25/02/09 I called Dr B’s secretary to ask her when the MDT (Multi Discipline Team) meeting is in the week. She said Monday afternoon and that she would book me in provisionally for my case to be discussed. She said that she would check with Dr B to see that this was ok. She also said that discussion of my case would need to be postponed if the results of the biopsy which they are taking tomorrow are not back. It is therefore crucial that we get these results in time otherwise this means another weeks delay before any possible treatment can start.
26/02/09 The liver biopsy, from the CT scan he used ultra sound to locate the same abnormal spot on my liver. He said it wasn't’t so clear as it was on the CT scan. On the ultrasound screen he was able to take measurements to know the exact position that he needed to go in at and the exact depth to go. He marked my skin at that point.
This is almost exactly the area that I had first got the pain at. I had said it was at my right front bottom rib.
He then numbed up that area with 2 injections. When he inserted the instrument I never even knew it was in. He said that I would hear a sort of snap, and I did, and he did it twice. The instrument he used was long and thin and spring loaded so that it would take a bit out of the tissue. I never felt anything, the doctors taking 7 attempts at putting in a cannula this morning was 10 x worse. I had to lie on my back for 6 hrs to allow it to heal.
Later Dr B visited me in the ward to see how I was. He said he would call me on Monday if they had the results.
I asked Dr B “When a VQ scan is not a conclusive test why is a CT scan not done earlier in the process at about the time of the VQ scan,? The VQ scan only tells us that parts of my lungs are not receiving blood, this is very likely to be caused by PE’s but could also be cancerous lesions, or something else. CT scans give a much bigger doze of radiation about 200 times that of a normal X-ray. Especially in younger patients they don’t like to give it. He also said that it is not in the treatment pathway in this country and that he knows that in other countries they give CT scans much earlier and more frequently in the treatment process.
I also asked about continuing to take fragmin if there possibly never were any clots in my lungs. He said he didn't believe I ever had clots in my lungs but that it is best to continue with the fragmin because with cancerous lesions there is an increased chance of a clot forming
2/3/09 Dr B called and said that he had the results of the biopsy. It is is cancerous and is a type called an Adeno carcinogen. He says that this is a type that could come from almost any organ. He said that the pathologists did further tests - stain tests (I don't know how this works) From the results they suspect the upper tummy. The pancreas or the stomach but they think the pancreas is more likely. I asked if I should have other symptoms like diabetes if there was a problem with my pancreas. It doesn't always follow that it would show any symptoms. I asked him what the likely treatments are now He said that he is not qualified to comment but I am to be discussed tomorrow at 1:15 at the MDT meeting. He said Dr Moran will be there as he is a specialist in this area. He said the oncologist's would be there too. He said he would call me in the afternoon to discuss the results of this meeting. A meeting between me and the oncologist's would then be arranged.
3/3/09 Dr B called with the results of the MDT meeting he said that as we already know it is not curable but Mr Shokat from the Beatson would like to see me and offer chemotherapy treatment. I advised Dr B that I was having much more continuous bleeding and that my blood count must be low. Now very few BM's did not have blood. He said that he would like to get blood samples taken and we agreed to come in tomorrow at 12 am.
4/3/09 At the 12am meeting I said that the MDT meeting nothing much seems to have come out of it other than that I could be offered chemotherapy. At the discussion was there anything further said? He gave us the list of those at the meeting himself, Mr Moran, 2 Nurses, Mr Shorcat by video link from glasgow, pathologists. They said that my general condition was good and that I would be suitable for the chemotherapy. Mr Shokat as well as saying that he would like to discuss it with me and offer me chemotherapy also said that the treatment will also help the Crohns disease. When I tried to get more information from Dr B as to the likely effectiveness of the chemotherapy. He said he really can't say because it is not his field and if he did say something it would very likely turn out to be wrong. He said that Mr Shokat probably wouldn't be able to tell me either but he will give me statistics. He said that everyone reacts differently to the treatment. He took about 5 blood samples and said that he thinks my blood count will be low and that I will need a transfusion. He asked about how effective my pain medication was and decided to put me onto a longer lasting drug - He prescribed Zomorph which is Morphine sulphate 30mg modified slow release capsules. If required I could also take the Sevredol 10mg. He was also concerned about my breathing and examined me and said he would ask for a chest x-ray. He also suggested that I go on a complan high energy drink and said he would try to arrange this with the GP. I said I was concerned about the delay that would likely take place in getting an appointment at the Beatson. he said it had been faxed to them this morning and that Julie was to phone this afternoon to see that we had the appointment went for the chest x-ray after the meeting. He said he would call me that night with details of whether to come in for a transfusion and details of the appointment.
At 6.15 he called to say that he hadn't had the results because of a computer problem but he would call me at 9 am tomorrow and that he would probably have me in for a blood transfusion. He also said that the Beatson did have the appointment request but that Mr Shorkat's secretary was off and a stand-in was dealing with it and that they hoped to have it confirmed tomorrow. He also said in response to an earlier question where Morag wanted to know if the cancer was differentiated or non-differentiated. He said it has well defined glandular nodules. (Whatever that means.)