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Friday, 6 November 2009

How I found out

Friday 16 October 2009:
Lots of people at work had coughs and colds and although I am normally quite resilient to them, I started with a cold.

 Saturday 17 October 2009:
I had started to take cold and flu remedies bought over the counter as soon as I started to feel the cold coming on, about the previous Wednesday. The usual Day and Night tablets. In the past they worked really well. After eating my tea that evening I started to get pains in my Chest. I didn’t think it was a heart problem, as I didn’t have any pains down my arms etc. I did consider indigestion as it was immediately after my evening meal but during the evening and throughout the night it got progressively worse. By about 3:30am the pain was so bad I could hardly move. I realised that it was probably the cold that had got onto my chest, but because it was so painful I decided to take myself to hospital to get it checked out. That was a painful drive! (with hindsight something I wouldn’t do again).

After arriving at the hospital they plugged me into various monitors and checked my heart and blood pressure regularly. The also took some blood samples and sent me for some chest X-Rays.

After the usual waiting times and change of shifts in the Doctors and Nurses….

Sunday 18 October 2009:
… The hours passed and they moved me onto a side ward. They had already told me that it wasn’t a heart condition and it was an infection on my Chest. After waiting a while a nurse told me that there were some abnormalities with my blood and they just wanted to check further. A Doctor examined me and confirmed that I had Pleurisy which he would provide some Antibiotics to clear it. However he was more concerned with my blood count, as it showed I was was anaemic. He has various question to see if I had noticed any blood loss, such as nose bleeds or blood in urine or faeces. To which I answered no to all of his questions, everything seemed normal to me.

After having more blood taken and the results showing the same he referred me to another department called ‘Meds’ which would be able to investigate further.

Unfortunately they were very busy and no beds were available, but eventually somebody came down to see me. Again after asking more of the same questions they were unable to provide an answer to me as to why I was Anaemic. I wasn’t showing any major symptoms of blood loss they mentioned that they would probably do a couple of endoscopies one down my throat and one up my anus (ouch) to see if they could identify anything that wasn’t obvious. She did explain though that there were more urgent cases that required the equipment for people who they definitely knew had internal bleeding and it would more than likely be a few days before it would become available. So what she suggested is that because I wasn’t showing any major signs of blood loss that I could probably go home rather than stay in the hospital for two or three days waiting. They would then recommend to my doctor that I need to referred back to the hospital urgently for the endoscopies and they would be put me at the top of the list. As I didn’t particularly like the idea of staying in hospital (never had a single overnight stay in hospital in all of my life), I was quite happy with this suggestion. However before she recommended this she wanted to discuss it with her superior to make sure it was ok and she hadn’t missed anything.

So after a further wait a more senior consultant came to see me and did the same checks as the others, re-examined X-Rays and prodded around in my stomach finally agreed that I was OK to go home, but insisted that I must go and see my GP as soon as possible once the Pleurisy had cleared up enough for me to.  After a bit of confusion with the computers and not being able to print out any notes, She ended up creating  a hand written letter to give to my Doctor stating that I URGENTLY needed the further investigation as why my blood count was low. It explained that my Iron and B12 etc were normal and various other bits that I either didn’t understand or couldn’t read (usual doctors handwriting).

After all the waiting and test, 13 hours later I finally got to leave the hospital. So I struggled home again in a lot of pain with my Chest and the Antibiotic and pain killers they had prescribed.

Thursday 22 October:
After a few days in bed resting and taking the tablets I felt well enough to get up and go to the doctors. My chest was still hurting but at least I could now move and was at least coughing up lots of yucky stuff that was clearing my chest.

Speaking with the Doctor I gave him the letter and explained the situation. He had a bit of a moan about the hospital not doing the test and said that he couldn’t really refer me back without knowing the full details of the blood results. After arranging for another appointment the next day he provided me with a doctors note putting me off work till the 30 October, he didn’t want me going back to work until they knew all the details. He also gave me a sample bottle for urine and Fecal Occult Blood Test (FOBT) card (a test to see if there is blood in my poo).

Friday 23 October:
Back at the doctors in the morning with by bottle of urine, which he tested and said it looked fine. He took some blood to send of so that he can get the results and then refer me to the relevant location in the hospital. He made another appointment for the following Thursday 29. They couldn’t arrange an appointment before that as they weren’t expecting the results back until probably Tue/Wed and Wednesday the computers were being updated, so they wouldn’t be able to access the details.

Tuesday 27 October:
Went to the doctors in the morning to drop off the FOBT card. I gave the test to the receptionist and asked if my blood results had been returned. She looked on the computer and said that they had received one lot of results and they came back ok, nothing abnormal. This was obviously a bit of a surprise as all the other test showed a low blood count. It was a bit of a relief as I had already started investigating the causes of Anaemia on the internet (as you do!). I used the information the Doctors at the hospital had provided and the read the letter that they gave me to give to my doctor. From my digging and with the little knowledge I had, it was pointing to an internal bleed, possibly an ulcer or something similar. So I knew the reason why they mentioned the endoscopy; however this would normally have signs, such as the blood in Urine, stools or vomiting. The other thing that I kept coming back to on the internet was Leukaemia, which was obviously worrying. So when I was told that the blood was normal I was a little confused, but at the same time relieved. This information though was only from the receptionist who probably didn’t have access to the full set of results, so I would have to wait till my next appointment on Thursday.

Thursday 29 October:
Arrived at the doctors where there was a bit of confusion as the computers that were supposed to be fixed and updated yesterday still weren’t working. Everything back to the old days of paperwork.

I went in to see the doctor who looked a bit confused without his computer to refer too. He said that they had only received part of my blood results before the computer went down and that it showed that I was Anaemic so that would be the reason why I was feeling tired. I had to remind him then that I already knew that and the reason I was waiting for the results was to see where he was going to send my details to in the hospital. Once I jogged his memory as to the reason I was there, I think he started to recall the details (has the computer replaced peoples memory to the point where if it isn’t in front of them on a screen it doesn’t exist – a question for another time maybe). He told me he would ring the hospital later on that day and give me a call to let me know what they find. He also provided me with another doctors note, putting me off work till the week ending the 13 November.

Sure enough, later on that afternoon I got a call where he let me know that he had spoken to the hospital that did the blood tests and discussed my case with one of his colleagues and they had both agreed that there were some strange things going on with the results that needed investigating further (did I not mention that at some point when I gave them the original letter from the hospital!). They said they had now passed my details over to the hospital and I would be hearing from them to arrange an appointment to go in for further tests.

Friday 30 October:
I didn’t hear anything from the hospital, so just had to wait wondering what was wrong with me. I prepared myself mentally for the tests that I would have. No doubt the first ones would be the endoscopies to search for anything going on inside that could cause any internal bleeding that isn’t showing up. Then if that proved inconclusive to have further test, probably for Leukaemia which I had read they would do a stem cell sample (bone marrow extract from the hip).

Monday 2 November:
The hospital called to tell me that an appointment had been made for Thursday 12 November. They provided the times and ward number that I needed to attend.

I did think that this was  quite a way off, considering that initially I was told it was urgent.

Wednesday 4 November:
I received another telephone call from the hospital asking if they could change the appointment date to tomorrow, Thursday 5 November.

I thought they had taken another look at the results and wanted to get me in earlier as there was some concern about my blood count, which the last results showed to be 9.6.

Thursday 5 November:
I arrived at the reception desk at 9am and gave them my name, I also asked the receptionist if she knew why I was there,  as nobody had told me what test I was having done. I assumed it was the endoscopy, but was sure. She looked a little a surprised and went off to talk to someone and called me over to speak to one of the nurses who was looking at my notes. She explained that it wasn’t for an endoscopy, but to discuss the blood results with me. A little bit vague but at least I now knew it wasn’t and endoscopy. What it did mean for me though is I now started to expect it was Cancer as they had obviously skipped the internal bleeding idea!

I was taken into a room with a doctor and a nurse. My wife Charito was with me. He explained the test that they had done and the symptoms were pointing to Myeloma. He asked me if I had heard of it. From my research, I knew exactly what he was suggesting. They said to determine 100% if it was Myeloma they would need to do some further test. Further blood, X-rays and the bone marrow sample. The Doctor and Nurses were very good and were well trained. My Wife was obviously upset, but I think they were a little surprised at my reaction. I wasn’t sure if they thought I didn’t understand or it was shock.

It took all day for the various test and results to come back. The bone-marrow extract was more difficult than it should be. It seems to take more local anaesthetic than normal to work on me (either that or I have a very low pain threshold). The bone marrow didn’t want to come out it was so compact, only just had enough to analyse.

Finally by early evening the test results were back and the doctor called us in for the results. They confirmed it was Myeloma and went through all of the explanations of the various things they will do and the drugs they will put me on.

We had lots of information to digest by the time we left. The first things I wanted to do was inform my Children (from a previous married). Telling them was the hardest thing to do. That was when I first started to cry as nobody wants to tell there Children that they have Cancer. I told my daughter first (she is 21). I then went to visit my oldest son (22), both very upset. The last one, my youngest son (17) I had to telephone, as he doesn’t live local and I didn’t want him to hear off anyone else. It upsets me to think about this as I write this.

I informed my elder brother who seemed to take it in his stride. He offered to be bone marrow donor when the time arises, as did all the rest of the family.

I have another brother that I haven’t seen or spoken to for many years. My eldest son has kept in touch with him, but it was still a surprise when he had no hesitation of calling me once he found out. We agreed to put the our differences in the past and he has also offered his bone marrow if he can.

My wife has just asked me if I am writing a book, so I had better stop this blog message here, so she can have a read and carry on in a new post. I am writing this on the 7 November, so trying to catch up :-)