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Monday, 30 November 2009

Back at work

I’m back at work again. Day going ok, trying to get back into the swing of things and catch up on the many hundreds of emails. If I can have more days like this, I will be happy.

Sunday, 29 November 2009

Feeling OK

I had a good nights sleep last night again, thank goodness. Managed to sort out my stomach which has helped tremendously.

Steven (my eldest son) is here doing some decorating for me and doing a very good job of it. He has worked really hard all day yesterday and today and is spending a few day with us until he has finished. I might even feed him while he is here if he continues to work hard :)

Blog problem

I’ve had a problem with the blog the last couple of days, where it wasn’t showing correctly.

I have fixed it now, with a little bit of reconstruction, so hopefully you can all see it again.

Saturday, 28 November 2009

Rough night

I had a rough night last night. I have had stomach pains again and was rolling around in agony. Couldn’t get to sleep. In the process I have hurt my shoulder, not sure if I have pulled a muscle.

Totally exhausted today and in pain still with my stomach and arm.

Not having a good day really :(

Thursday, 26 November 2009

Change of plan no blood

There has been a change of plan, they are not giving me a transfusion now. Im going home and coming back tomorrow for an appontment with my usual team and we will see how I am then after moving around a bit more.

Just waiting for my meds etc then off home.

Blood Transfusion

I need to have a transfusion as my count has fallen below what is acceptable for my myeloma.

Fingers crossed I may even be out tonight.

Slept well Temperature still dowm

Had the best nights sleep so far, probably still be a asleep if they hadnt woke me for my obs and antibiotics.

Low potasium in blood

They have noticed my potasium levels are low so they are giving me Sando-k solution three times a day. Its not the cause of any problems they just spotted it so thought they would bring the levels back up. Need to eat bananans when I get out.

Wednesday, 25 November 2009

Temperature back down

Its gone down again, lets see what the next one brings.

Provider -comments

When adding a comment under the provider list choose NAME enter you name and leave the Url box empty. You can use the anonomous if you dont want write your name.

The other options are to use one of your account you may have with snother provider. Such as a google account
AIM (AOL Instant Messenger)
If dont know what the other are dont worry you clearly havent got one if you dont know what they are.

Temperature creeping back up again

My temperature has started to go back up again. Dont know why. I have the fan on again to try and bring it down again.

Word verification for comments

I have turned off the word verification when you add a comment to make it easier for you. If I start to get a lot of automated spam comments I might have to turn it back on.

Not much sleep

I didnt get much sleep last nigh. I think the drugs were battling against each other. Some make me drowsy and others make me aleert.

When I did get some sleep I woke up sweating again and had to change my top.

I will try and get some sleep throughout the day.

Tuesday, 24 November 2009


I really appreciate comments and emails so feel free to write as many comments as you want or email and text me. At least let me know that people are actually reading what I post. It doesnt have to be much, just a short something. At least I will know its not for nothing.

I know I started this blog to keep everyone informed so I didnt have to go over the same conversations with everyone; however now it seems to have had the opposite effect and I dont hear from anyone. You can still call me as well but if you are following the blog at least you will be up to date.

Thanks :-)

Where am i

I just looked at the blog and noticed it has been adding a google where am I link. This is because I enabled the google logging on my phone app. I have disabled it again now as it is just confusing as apparently ward 50 is on blacon Ave.

Now i have two

They have put the new canular in, but still waiting for them to come and remove the old one.

I was at : Address not available

More Antibotics and blood taken

I've had more blood test done. Not how much is left in me now with the amount they have taken since I have been in.

Had yet another shot of antibiotics. They said they are going to change the Canular (photo) today. I will let you know if they do. They use this to insert any meds like the antibiotics. The bloods they have to keep jabbing my right arm.

I was at : Blacon Ave, Chester, Cheshire CH1 4,

Temperature down again

Last obs my temp was down again to 36.2. So it looks like they have it under control with the new antibiotics. I still have the rash all over me but it does seem to be slightly less than it was.

I was at : Blacon Ave, Chester, Cheshire CH1 4,

Temperature still ok

Just had my first obs today and my temp is still down to 36.7 lets hope it stays there. I will see if I can get this fan turned off later.

Sweaty in night

I slept relatively well, but woke up with my back and pillows rather wet frow sweating in the night. I've mentioned it to the nurse this morning.

Just had another shot of Antibiotics not had my obs done yes, will let you know later if they are up or down

Monday, 23 November 2009

Sexy Stockings

Just had another shot of Antibiotics and the and they also measured me up for some sexy stockings.

One of the side effects of the Thalidamide is it can cause blood clots hence why I inject myself each morning with the tinzaparin which thins the blood.

The white socks (that sounds better than stockings) they have given me is an added precaution while in bed to stop Deep Vein Thombosis (DVT) The same as flight socks on a long-haul flight.

Doing ok

Im doing ok at the moment just waiting for my Thalidamide tablets to arrive. Last obs my temp was 36.7 yippee. Still need to keep the fan on though.

Hopefully get some sleep tonigh, if I can with the fan blowing in my face and the noise it makes.

Back in hospital again

As some of you are aware, after coming out of hospital on Sat afternoon, I had to go back in on Sat night because I had a high temperature.

Its been a rough few days and not had much sleep. I have an infection so they are pumping me with Antibiotics. They are going to up the dose today as my temperature is still high. I am on an isolation ward in a room of my own, so I dont catch anything else.

Saturday, 21 November 2009

Going Home

I have seen the doctor and will be going home at about 2pm

More tablets to take and another prescription to pick up. I could start my own pharmacy

Friday, 20 November 2009

In Hospital

im in hospital at the moment. Nothing to worry about. I cam in for my bloods taken and get some other medication.

I wasnt feeling well at all this morning. Chris and Jodie next door kindly offered to bring me in. Chris was waiting for me to finish, which took longer than expected.

Just after coming out of oncology I was sick all over the floor. Not pretty.

They put me on a drip and have been monitoring me. Hopefully home tomorrow.

Just downloaded an application for my phone so I could write this. Can nothing stop me.

Thursday, 19 November 2009

Should I podcast

Something I have been looking into is Podcasting. Rather than only writing about things here I’m going to have a go at creating a Podcast.

A podcast is like having your own personal radio station which you can listen to when you want. There are lots of podcast sites available with music, documentaries or even books read to you that you can download. You listen to them either on your computer or an mp3 player such as an iPod or mobile phone.

I’m going to have a go and see how it goes. I’d like to think that eventually I can get a regular one with people following it, so feel free to pass it on and let as many people as you know listen to it.

Some of the things I want to do is record some of you, yes YOU. It might not always be about Myeloma, it can be about anything. No doubt I will start with my Cancer and go over some of the things I already have done to get started.

I want to start promoting Cancer support (something maybe I should have been doing before getting Cancer). The Macmillan site is very good and I will be looking into getting a community together at some point.

Let me know your thoughts. Would you be interested. Do you have any ideas.

Chemotherapy – Second dose

Waking up this morning I felt a lot better, my body wasn’t aching as much as the last few days, only slightly.

Today is my second dose of the Chemotherapy – Cyclophosphamide. Up early to sort out all of my tablets before going to work. Had what seemed like a cup for of tablets for breakfast, plus the usual injection. Not forgetting the Optional sickness tablet Ondansetron. Although it is optional, it doesn’t really make sense to me not to take it, just in case.

Arrived at work with just enough time for a parking space a lot more staff since I went off sick. Felt ok during most of the morning, but as the day grew on my head was a bit swimming, but nothing I couldn’t cope with. I haven’t really done much at work all week, just answer a few emails and stare at the screen a lot. I’m not going to push myself, it will only make me feel worse.

At the moment I feel more positive actually getting out of the house and at least attending work, even if I’m not much use to anyone at work.  My staff are good, they tend to leave me alone, I don’t think I would cope too well with everyone asking work questions all of the time. My head would just explode!

Managed to get to the end of the day without being sick and to most people they probably didn’t even notice I wasn’t brilliant. Unless of course you count the time I was curled up in a ball with foam frothing from my mouth …. nah not really!

Wednesday, 18 November 2009

All of my body aching

It was very difficult to get up this morning for work. Last night was a rough night, I felt as though my chest was being crushed When I woke up I was totally drained.

I had one of those conversations with myself where I had to convince myself to get out of bed to push myself. It was either get up and go to work or stay at home. The rain and wind could be heard outside, lashing against the window, it would have been so easy to stay in bed. I eventually convinced myself it was best to go and dragged myself to work.

I didn’t do much at work again as all day my body was aching, just sitting there it hurt.

Hopefully tonight I should feel a bit better and get a better sleep.

Tuesday, 17 November 2009

Odd taste of hand gel

I mentioned previously that my tongue was tingling a bit. It also seems to be making things taste funny. I have a strange taste in my mouth that  makes everything seemed to be tasting a bit chemical. It taste reminds me of the hand hygiene gel that I am using – Boots Anti Bacterial Cuticura. I know it sounds silly, but it is as if I can taste what I have on my hands!

Spoke to hospital about the side effects

I telephoned the hospital this morning to see if I could speak to Laura one of the nurses, but she was on holiday. Dee was there, but she was busy with other patients. The receptionist  Kathy was very good, she remembered me from last time I was there. I must say the staff are very good at the Countess of Chester, they have been very helpful and nothing is too much trouble. Kathy was going to get Dee to call me back at work, but I couldn’t even remember my own office number. Yesterday I couldn’t remember peoples names either, I’m not sure if that is a side effect of the tablets though or me just being stupid and forgetful! Anyway, I said I would call back later.

I left work early today – my head just wasn’t in it. I think I spent most of the time looking at the same email thinking … why am I looking at this email.

I got home and managed to go to the loo (at least a little bit) which helped with the constipation.

I called the hospital again and spoke to Dee and explained that I wasn’t sure if I should wait until my appointment on Friday to discuss the side effects or to report them as soon as I had them. She said to let her know what the effects were and she would see. So I listed them to her

  • Tingling in the feet
  • Tingling in the fingers
  • Tingling / numbness of the tip of my tongue
  • Sweating in the night
  • Chest pains when going to bed like indigestion or Anxiety
  • Constipation

She explained that they are normal. She did make sure though that I don’t get a temperature and to keep an eye on the night sweats. She said she would see me tomorrow if I wanted to talk to her she would be available to talk things through more, but I said it was ok, I was in on Friday anyway and just wanted to make sure that what I was feeling was normal (so to speak).  So everything is fine I feel a bit happier knowing that they are not unusual and to be reassured that the staff are on hand whenever I need advice.

As for the constipation, last time I was at the hospital they said they could give me something if I needed it. So I thought there is no point in having any extra pain, I might as well ask. I didn’t really want to go in to the hospital to get a prescription for something though and asked Dee if there was something that I can buy over the counter that wont interfere with the rest of my therapy. She suggested buying some Lactulose. So off I trotted (is that a bad word to use here) to the chemist to see if I could get some.

IMG_1120It seems a bargain to me. I bought 500ml for £3. It is a mild laxative that I can continue to take with the tablets. An unbranded product costing probably pence as to what a branded type product would cost.  It isn’t the type of thing that you promote to you mates though really at the local pub …. ‘You know I got a bargain at the chemist today, I bought half a litre of laxative for three quid”. How to win friends and influence people.

Monday, 16 November 2009

A bit spaced out

The tablets seem to be doing odd things to me at the moment. Yesterday I was just a bit spaced out or mellow and today has been the same.

Today is the first day I am off the Dexamethesone (steroids) for a few days. The pulse method off for seven days I think before going back on them. So it is bound to make me feel a bit different. Although I don’t really think it is that at the moment. Personally I think it is the side-effects of the Thalidamide. I’m going to call the hospital tomorrow to have a chat with them about it. I’m also feeling out of breath and chest pains, which could be part of the anxiety that people experience. I’m currently having the sweats in the night as well, which doesn’t help. They also told me I may experience tingling in my fingers and toes which I seem to be having as well as the tip of my tongue going a bit numb, which is weird.

I’m also suffering from constipation at the moment which just adds to the problems. I was told that this would probably happen with the amount of drugs I’m taking, I will mention it to the hospital tomorrow as well.

Back to work

Well I went back to work today. It was tiring and awkward. I was aware that some people already knew I had cancer, so meeting them in the corridor was a bit awkward; for them I mean. For some people they automatically say ‘Hi, you alright’ and then realise that actually I'm not and they just realised what they said.

I spent today making sure that those that I speak to are fully aware of my situation and explained as much as I can about the myeloma. I would rather they know than make assumptions. I have explained that they should feel free to come and ask as many questions as they want, I don’t mind.

Saturday, 14 November 2009

We met Elizabeth Taylor today

We went to a Living with Cancer Information Session today. The session was led by Liz Taylor (Macmillan support and Information Manager). Myself and Charito spent about an hour and half talking to her along with another person who has cancer. I found it very informative and she gave us some practical advice.

The sessions are held every second Saturday in the month, apart from a few like December, where she has found people don’t turn up because of Christmas.

Liz is going to put us in contact with a group that is trying to set up a meet in Chester at a pub for younger people like myself (yes I did say younger, as it is apparently unusual for a person of my age to get myeloma, they are normally in their 60’s or 70’s. aren’t I the lucky one).

The next session at the Healthy Living Centre, Civic Hall, Civic Way, Ellesmere Port CH65 0AZ is to be held on the 9 January – Nutritional Awareness. This will be led by Carol Moris-Lewis, Wiral Holistic Care. All are welcome, it isn’t just for Cancer Patients. I have the schedule till the end of June if anyone wants to see it, just let me know.

Up early in pain

I woke up early this morning so thought I would use the time to catch up on my blog posts. I was woken up in a lot of pain with my right shoulder. I’m still not 100% sure if it is muscular or part of the myeloma. At the moment we are putting it down to a muscular problem. I need to make an appointment through my usual doctor to make an arrangement with the physiotherapist. Apparently it will be quicker to get an appointment this way, rather than through the hospital.

Well Wishes from Work

I had a nice surprise, Bill and Carol (the ex mother and father in-law and grandparents to my children, a lovely couple) came around Friday night. Their daughter who works for me as part of the Ecommerce Team had passed on a gift to give me. She couldn’t come over herself as she has a cold and didn’t want to pass it on.

They had a collection at work for me, I got a lovely card with lots of well wishes, along with some books and DVDs to keep me busy as well as a WH Smiths voucher and some extra cash.

It made me feel a little guilty as i am going back to work on Monday, but I don’t think at this stage they all  know I have have Cancer, so I’m sure they wont want their presents back. (I hope! I will have to watch the DVDs and read all of the books over the weekend just in case he he ).

Second day of tablets (Friday)

Although this was the second day of taking the tablets (Friday, i’m a bit late writing this as it is now early Saturday morning, couldn’t sleep), it was the first day of taking them on my own at home. Everything went well .. nearly. I ended up taking one of the tablets I shouldn’t have. Nothing major though, it was one of the optional anti-sickness drugs (Ondansetron) that I should take on the same day as the Chemotherapy (Cyclophosomide). All it meant was that I wasn’t sick yesterday either!

On the Thursday at the hospital I injected myself at 12pm. I want to be able to do this prior to going to work rather than in the office, so I have to reduce the time by an hour each day. So today (Friday – I really must get around to writing these on the same day as it gets confusing), I injected at 11am.  Saturday it will be 10am and Sunday at 9am until eventually on Monday prior for leaving for work it will be at 8am.

Thursday, 12 November 2009

And so the Chemotherapy Starts

Telephoned the Hospital today and the Thalidomide drugs had arrived, so went into pharmacy to pick them all up and headed down to the haematology to go through the process.

Went in to see one nurse who ran through the injection process.

Tinzaparin (Injection)
Thins the blood to help prevent blood clots. I have to inject that myself on a daily basis into my side just under the rib cage. I’ve never had to inject myself before but found it quite easy although a little apprehensive as it first went in.

After going through the first injection the nurse provided me with a yellow sharps bin for disposing of the needles (brightens any room).

Then off to see another nurse (Laura) to run through the rest of the tablets.

We started with the main CTD medication

Cyclophosphamide (Chemo)
500mg (10 x 50mg tablets) Once a week. Possible side effects include bruising or bleeding, anaemia, feeling and being sick, loss of appetite, irritation of bladder lining and hair loss (if this does happen it doesn’t bother me. I’m hoping I wont have to shave as much either, bonus :-D). There are other less common side effects, which you can have read about on the Macmillan site.

100mg (2 x 50mg capsules) Every Day. I haven’t taken these yet as they cause drowsiness, I am taking these in the evening before going to bed (I might even get a good nights sleep). Other side effects are birth defects (not planning on having any more children), Feeling and being sick, blood clots, temporary reduction of blood cells causing anaemia, lethargy, loss, of balance, constipation, loss of appetite, numbness or tingling in hands or feet, headaches, dizziness on standing, rashes and ‘swelling and fluid retention’

Dexamethasone (Steroids)
20mg (10 x 2mg tablets) Taken every day for four days then a break of seven days then again for four days (Called a pulse/burst method). Possible side effects include irritation of the stomach lining, temporary changes in blood-sugar levels, fluid retention, increased appetite, increased chance of infection, delayed healing and behavioural changes (does this mean I will suddenly become very patient, that would definitely be a change in my behaviour as I’m not that patient. I’m sure Charito would agree with that)

And now for the rest of the medication…

300mg (1 x 300mg) Taken every day. A prevention against Gout.

100mg (2 x 50mg) Taken every day. An antifungal drug to reduce the risk of infections that can cause problems with the mouth, throat, lungs, bladder as well as other areas.

8mg (1 x 8mg tablet) Taken twice a day on the same days as the Cyclophosphomide. This is an anti-sickness drug to reduce the possibility of me being sick because of the Chemo.

30mg (1 x 30mg capsule) Taken every day. Reduces the acid in the stomach and prevents stomach ulcers.

So in all today I have have taken 28 tablets/capsules and one injection.  This only happens every three weeks as some of the tablets are reduced on certain days as mentioned above.

Fortunately they provide printouts with al the days listed and the medication take on the relevant dates. It’s really useful as there is so much to take in, I couldn’t remember it all.

Wednesday, 11 November 2009

Start of treatment - Nearly!

As mentioned in previous post, I had my appointment today. It was to sign the consent forms for the various bits of treatment that I will be having (CTD) and to be issued with all of my tablets and injections.

Cyclophosphamide (The C in the CTD)
Is the Chemotherapy

Thalidomide (The T in CTD)
Helps reduce the paraprotein

Dexamethasone (The D in CTD)
Again helps reduce the cancer.

As usual though, nothing goes to plan. The pharmacy had ran out of the Thalidomide tablets! The are very strict on the use of the Thalidomide tablets and only have a limited stock, although the Chief pharmacist was very apologetic.

Rather than go through all the tablets and injections without the Thalidomide, I agreed to go back in again tomorrow when they have the tablets back in stock. So I will go through all of the tablets and procedures for injecting myself tomorrow with a nurse called Dee.

It is a three week cycle of chemo and I have to go back every few weeks for blood test and then after each cycle of tablets to get the next batch of tablets and injection for the next cycle.

To pee or not to pee

I had my appointment at the hospital today and had to take in a container of urine as part of the Creatinine Clearance test.

Yes that is a gallon of wee. It could be worse …… It could have been a fecal test (poo).

Tuesday, 10 November 2009

Myeloma patients

Change of appointment .. or was it

Just had a letter off the hospital telling me that they have changed the appointment.  I have my first appointment tomorrow at 11am.

I read it and it said it had been changed to the Thursday at 9:00am.

So I updated my diary with the details, thinking typical my first appointment and they have changed it already.

It wasn’t until I had updated my diary that I re-read the letter.


An appointment was made for you with HAEMATOLOGY CONSULTANTS at the Haemtology & Oncology Suite, in the Orange Zone, at the countess of Chester hospital on:

12 November 2009 at 11:00 am

Unfortunately, we have had to change this appointment. Your NEW appointment is on:

Thursday 5 November 2009 at 9:00


Did you spot the obvious?

Due to the postal strike, I only got this letter on the 10 Nov. My original appointment was for the 12 Nov which the telephoned me and changed to the 5 Nov. This was the letter confirming that telephone conversation.

It’s a good Job I re-read it!

Monday, 9 November 2009


I went to the dentist today for a check up. Part of the treatment I’m going to have is bisphosphonates which can cause problems with the Jawbone.

After seeing the Dentist today I need to have a couple of small fillings, but nothing that could cause problems later on. I was told by the dentist that the problem occurs with the jawbone when teeth need to be removed, fortunately I don’t need any removing.

So after having the check up and the having a couple of X-Rays done (required because of the myeloma), I was charged £45. This had me wondering if I actually needed the extra X-Rays (if I didn’t have myeloma) or was I charged the extra because I needed the work done purely because I was going to take bisphophonates. Which then means I was charged because I have Cancer! Some how that doesn’t seem quite right, not that I mind paying, it is the principle.

So an appointment has been made for 3 December to have my fillings done, providing that I am feeling OK. I hope I will be …. I want my monies worth :-)

Sunday, 8 November 2009


I haven’t been able to sleep very much over the last few days. Partly because of taking everything in at the moment, but mainly because of my chest and arm.

My chest is starting to hurt again. I’m not sure if it because the pleurisy hasn’t completely cleared or for some other reason. It hurts when I cough and also when I lean on my side. As well as my chest my arm is hurting. I have had a problem with my arm for a few months now and put it down to other problems with my muscles. I’m not sure now if it is that or associated with the Myeloma.

Taking into account the bone-marrow sample which hurt my back and the above I haven’t been able to get much sleep. If I lean on my left side my chest hurts. If sleep on my back, my back hurts and if I try to sleep on my right my arm hurts.

Maybe I should try sleeping standing up :-)


Yesterday 7 November, I had quite a few family and friends around. All offering help where they can and kindly offering to donate their  Bone-Marrow when the time arises.

My brother Nick who contacted me as soon as he found out had also offered to help provide Bone-Marrow. I hadn’t spoken or seen Nick for a number of years as we lost touch over a family argument. It was really appreciated when he contacted me and quite upsetting to hear his voice again after so many years. I just wish it could have been under better circumstances. Sometimes though it takes something like this to bring families together again.

The evening went ok and I’m sure we will stay in touch and look forward to seeing him again soon.

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 :-)

What this blog is about

I have just found out that I have Leukaemia (update: Myeloma isn’t part of Leukaemia it is a separate disease) – Multiple Myeloma (MM). So I am going to write about the process and progress that I am making as I deal with this disease. I’m not quite sure what this will turn into, but at the moment I am thinking of writing on a daily basis, unless I have a really boring day :-D

A bit about me

My Name is Sean, I’m 43 years old (at the time of writing) and live with my Peruvian wife Charito in the UK just outside of Chester in Cheshire.

I have worked most of my life with computers and most recently as an Ecommerce Manager for over four years within the Travel industry.

I haven’t previously had any major illnesses and never had to have a stay in hospital. I am a non-smoker. As for wine, I probably drank too much, approximately 3 bottles a week (hooray for ASDA three bottles for £10).