Chemo tomorrow

Tomorrow is my Cyclophosphamide (Chemo) day. So I must remember to start taking my anti-sickness drug tonight with the others so that I’m not ill tomorrow.

 

What have I been up to today

The answer is nothing too exciting!

We nipped out to town again today to buy the small tables we saw yesterday at Habitat. Apart from that we have just had a lazy day at home.

I have been looking into Social Media and doing a bit of reading to update my skills …. you never know when they might come in handy!!!

Social Media is going to be the biggest advertising medium for 2010 or so the Social Media Gurus would have you believe.  If Pepsi are anything to go by, they could be right. Pepsi who have advertised at the Super Bowl for the last 23 years have decided to have no adverts at the 2010 event and are spending $20 million investing in Social Media campaigns. read more

It might be worth looking into …. a little bit of social media might be good for you.

Bone Marrow Transplant

At my last visit to the hospital I found out a little bit more about the Bone Marrow Transplant I will be having.

I will be having an autologous transplant. Which basically means they will be using my own bone marrow and transplanting it back into me.

More information can be found on the Macmillan site

An overview though is that they:

Extract bone marrow from me, probably from the hip using the same procedure they used to test if I had Myeloma (hopefully not as painful this time around as the Myeloma is reduced). During the process they take out some of the bone marrow.

They may put the bone marrow through a cleansing process (purging).

I will have High Dose Treatment – which means they kill all of the myeloma and the bone marrow in my body.

Then they re-insert the cleansed bone marrow back into me via a drip.

 Risks of high-dose treatment
Extract from Macmillan site

The main problems occur during the time when your bone marrow is recovering. This is when you could have possible life-threatening infections and bleeding. Your doctor will take into account your age and your general health when considering high-dose treatment for you. The upper age limit is usually 65–70. This is because the intensity of treatment increases the risks of severe side effects or of dying from the treatment after that age. High-dose treatment can sometimes be given to people over 65–70, depending on their general health and the risk of the cancer coming back.

This treatment is both physically and emotionally demanding. You may need to stay in hospital for up to four weeks or longer, and there will be times when you feel very unwell.

You need to weigh up the benefits and risks of this treatment, including the possible side effects (especially serious infection or bleeding). It is important to discuss this in detail with your doctor and your family and/or the transplant counsellor at the hospital.

New Year Cancelled

I was supposed to be visiting my brother Nigel for New Year, but after considering various things, I have decided it is best to cancel. As I wont be on the Dexamethazone this week it means I will be feeling very tired again, which isn’t a good start. That and coupled with the fact that I will be having my Chemo on Thursday I don’t think I will be in a fit state to drive over to Yorkshire for a few days. Especially as the weather isn’t good at the moment. I was really looking forward to going, but I think it would be a bit stupid to push myself to go under the circumstance. There is a point where I have to say to myself that I can’t do the same things I used do while having the treatment. I have spoken to Nigel and he understands completely and doesn’t think I should push myself to go and wants me feel better. I’m sure we will have other times when we can get together for a good catch up come the new year.

A Visit to Town

Yesterday was the end of my four day cycle of Dexamethazone, which means that today is likely to be the last day I feel like coping with everything. The Dexamethazone makes me feel ok and I don’t feel tired when I’m taking them. So I took the opportunity to go into town for a bit of a break and get at least some exercise after eating far too much over Christmas.

I did forget though that it was Bank Holiday and the start of the sales! So it was very busy. We took a look around some shops and went for a walk down to Habitat to have a look at some coffee tables, didn’t buy one, but have seen one or two we like.

Not sure how I will feel tomorrow, I will let you know.

James on Guitar Hero

James stayed at our house over Christmas and his Birthday on Boxing Day. Here he is demonstrating his skills on Guitar hero. Playing Sultans of Swing by Dire Straits.

Don’t forget!

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Support MylomaUK donate using my JustGiving page 

  And

My life with myeloma shop is now open

Christmas Day

Feeling ok my plan to feel better on the Dexamethazone has worked so I'm having an alright Christmas day. Dinner went to plan as well and everything was cooked ok and on time. As usual we all ate too much. James and Steven enjoyed it as well.

Christmas pudding didn’t go as planned though … we couldn’t find the brandy sauce that we bought so we had to improvise. Charito has a good idea to use some hot milk with Baileys & Caramel. It worked to a treat. In fact I think I liked it better than the brandy sauce.

Charito is very tired as she stayed up till 5am talking to her family in Peru. In Peru they celebrate Christmas at 12am and have there meal then as well and open all of their presents and stay up all night. As Charito couldn’t be with them this year, she used the web cam and spoke to her family all night and then got up at 8am with me, James and Steven. So very tired indeed. Last year we spent Christmas in Peru so I know exactly how busy it is over there and what they all get up to … Very crazy and busy all night. Fireworks in the streets and lots of parties.

Hospital Cycle 3

I’ve been to the hospital this morning to discuss the progress of my treatment. Dr Lee has changed some of the tablets I’m on after talking the the issues I have had with the Septrin and rash. The results from my blood test are looking very good still. The Myeloma is responding well to the treatment still my paraprotein is reducing still leaving only the good bits and my blood levels have risen again to 10.1 The highest it has been since starting the treatment.

I was gong to go on the nebuliser today to have the Septrin that way, rather than in tablet form. However as it is nearly Christmas and there is a risk of having side effects that could effect my breathing he has decided not to give it me this month and to start it on the 13 January my next hospital visit.

To make sure the rash doesn’t come back Dr Lee has stopped me taking a number of the tablets I’m currently taking and change one of them to another type that is a lower dose. He said basically anything that ends in the letters –zole has a risk of giving you a rash. So he has stopped the following.

• Fluconazole
• Septrin (co-trimoxazole)
• Lansoprazole – changed this to a new lower dosage alternative

I still have to continue with the three main tablets, the CTD

• Cyclophosphamide (chemo)
• Thalidomide
• Dexamethazone

The ones they have stopped are to manage the side effects of the main treatment, so I have to watch out for certain things, but nothing to be overly concerned about.

As well as the CTD I will continue with:

• Tinzaparin injection (daily)
• Ondanestron (anti sickness when having the chemo)
• Bonefos (for the rest of my life to strengthen the bones)
• New alternative to Lansopraz (can’t remember the name of it)

I picked up my prescription for the third cycle and dropped it off at the pharmacy. With it being Christmas as well as complicated prescription, I have left it with them and picking it up tomorrow, rather than wait around for two or three hours while they get it all ready.

So fingers crossed I should be ok over the next few days and be able to enjoy Christmas.

Imitation of a snake!

I have started to shed my skin just like a snake. Now that the rash has nearly completely gone, the after effects are that my skin is peeling. Everywhere where I had the rash, which is nearly all over my body, the skin is flaking and peeling off. The pic is of the top of my arm, but it is the same all over my back and chest. My face is pealing as well but I’m putting cream on my hands and face to reduce it as much as possible.

No Blogging yesterday

I didn’t get around to writing on the blog yesterday, basically I was too tired. Nick text me earlier to check if I was ok because I hadn’t written anything. So in case anyone else is worrying I’m OK. I will post a things here in a bit….. Watch this space  …… well not literally this space, the next blog message along :D

Tired day

I have been tired most of the day today. I have tried to help Steven fit a door for me, but every time I went to do something I didn’t feel too good. I kept getting pins and needles which was probably due to the Thalidomide effecting my nerves combined with the low blood. I hate the days after stopping the Dex I always feel really tired and useless. I think I am becoming a Dexamethazone addict … waiting for my next fix. Hopefully get my next fix on Thursday after going to the hospital on Wednesday. At least I will be happy and feel a bit better (even if it is only in my head).

JustGiving – working

It’s working again now, so if you want to donate using the site, it is now back up.

http://www.justgiving.com/mylifewithmyeloma

JustGiving – gadget not working

The gadget on the site doesn’t seem to be working you can make donations by going direct to the site at:

http://www.justgiving.com/mylifewithmyeloma

Pins and needles

My skin seems to be fitting a bit better today – I’ve been putting on the hand cream to stop them drying up which seems to have helped. I didn’t have much energy yesterday, the first day after stopping the dexamethazone is always a bad day. Today I have a bit more energy, but I keep getting sharp pins and needles in different parts of my face and arms. I will see how it is tomorrow and if it carries on, I will have to speak to the Myeloma team to get some advice. It is probably to do with the increase in the Thalidomide which effects the nerve endings.

JustGiving – donate to MyelomaUK

I have set this to raise awareness and support MyelomaUK all donations gratefully received.

Rash is reducing but…

Well the rash is going down. It isn’t as bad on my hands and arms. I managed to get some sleep without having to put any cream on last night. Still itchy though this morning on my back mainly, but definitely not as bad as it was.

Now I have a new thing to deal with – as the rash is going my skin is drying up. All my hands are cracking and are sore the skin on my ears as dried up and my lips are like shrivelled leather at the moment. I’m drinking plenty of water (I have to drink three litres a day anyway) to make sure I’m not dehydrating and using hand cream when necessary.

I’m off the Dexamethazone at the moment again so don’t feel as up as I have done over the last few days while on it. At least I am off work now and don’t go back till 4 Jan so it makes it a little easier to deal with at home. I should be back on them again next Thursday, so should have a happy Christmas rather than one where I am feeling down. I don’t think the others would like me crying into my Christmas dinner, it might just put them off their pud!

Update on irritation

I think the rash is reducing slightly, although the itching isn’t getting any better. I had to buy some cream to put on last night, I wasn’t going to try and go through another night of not being able to sleep. I’ve got some that is anti septic and stops the itching – it seems to help and I have some on for work today. My hands are drying up and my skin is cracking.

Can’t sleep the irritation is too much

I can’t sleep at the moment tried going to bed but the allergy is causing too much irritation – my back is very itchy. I had a bath to try and relive it, which it did while I was in the bath but once I was out and dry again it started again.

I’m going to try and get some rest if I can its just gone 3am and I need to get at least some sleep before getting up for work!

I’ve been doing a bit of reading to try and take my mind of it, but hasn’t really helped.

I will let you know if I managed to get any sleep tomorrow, or should that really be later on today.

Medical Alert info (ICE)

I forgot to mention that I now have various medical alert info in case of emergency.

I wear a medical alert wrist band that displays my name, what I suffer with and my NHS number.

There is a medical alert card in my wallet containing further details along with a special card with a link and unique id to a web site that contains all my medical records.

I also wear a medical alert necklace that is a USB fob, again containing my crucial medical details.

On my phone I have installed an App that anyone can see when they first turn my phone on that gives them details who to call and my conditions. (ICE) In Case of Emergency

So with all of the above they should be able to find out what is wrong with me if I have an accident or for what ever reason not able to communicate.

Better to be safe than sorry. I don’t want them giving me any medication that could make me worse.

I have to carry a steroid users card as well with me at all times.

Revenge of the Rash

Well the allergic rash is still covering me and is very itchy today. I have taken the anti-histamine, they daily dose, but that hasn’t done anything. The dexamethazone has reduced the swelling to almost nothing, but the rash if anything is worse.

I called the hospital again today and spoke to Dee again. They have stopped the Septrin that I am currently taking to see if that stops the rash. I took a tablet today as I was taking them on Monday, Wednesday and Friday on my Schedule. I’m not sure when I will see the affect of not taking them i.e the rash start to go. Soon I hope as i’m very itchy. I stop taking the Dexamethazone tomorrow again which is slightly worrying as I may start to get the swelling again.

I am back at the hospital on the 23 Dec where they are going to start me on a different method which I will have to have once a month probably using a nebulizer to breath in the alternative Septrin.

So i’m hoping stopping the current Septrin will have immediate effects and doesn’t last too many days prior to returning to the hospital as I can’t stand it at the moment – its becoming more and more annoying.

Birthday

It’s my birthday today. I’ve had a good day overall – the swelling has gone down but still have the rash, it looks like I have a sun tan all over.

Charito bought be a new shaver, so I no longer have to have a wet shave. I can even take this one in the shower with me and save a little time in the mornings.

Had to do a little bit of work today, even though I had booked the day off, but it was for my benefit so I didn’t mind so much.

Went to the cinema to see 2012 if you haven’t seen it, its worth going although as usual you can guess the plot before it happens but quite a good film overall.

Came home and had an enormous steak dinner with pepper sauce. Very full afterwards.

Had lots of birthday wishes from Facebook, phone calls UK and Peru and lots of emails. Even though some of those I would of expected to remember forgot … you know who you are!!! mention no names but they are my children!!

So overall a good day – back at work tomorrow for a few days before finishing for Christmas on Friday. Yippeee.

Doctors suggestion

Well the doctors visit wasn’t much good at all. I explain the situation to them and all they could suggest was go back to the hospital and see if they can recommend a different drug. As I have started the dexamethozone today this will reduce the rash and swelling while I’m taking it over the next four days.  So if it starts again after this, it is definitely not the allopurinol as I have stopped that and points again to the Septrin. The swelling on my face has slightly reduced and I think my hands are slightly more flexible. Hopefully tomorrow when I wake up I wont have a face like a fish (big eyeballs and big lips). The doctor has also given me a different anti-histamine this one is only one tablet a day rather than 1 tablet four times a day. The only problem is it will make me drowsy, so I haven’t taken that yet. I will need to work out the best time to take it. I might do it at night and hopefully ok for the morning. I’m off work tomorrow so tonight will be a good day to try.

I also got the doctor to prescribe more Bonefos while I was there as I have to take that for the rest of my life, I might as well get a supply in before I run low.

Conversation with hospital

I called the hospital first thing this morning to discuss the rash and swelling in my hands and face. There is no reduction in it, if anything it is slightly worse. Dee is off today, so I spoke to Sam, she asked me to call back in an hour, which I have done. They want me to go and see my GP as soon as possible today as unfortunately they are really busy today, but she emphasised that the GP must see me.

I was a little bit worried that the GP wouldn’t see me today as they have a stupid appointment system where you have to ring up on the day in the morning to get an appointment that day. I mentioned this to the Sam and she ‘said they have to see you’ if you have any problems to call her. Fortunately I didn’t have any problems once I explained my situation and I am going to see them at 12pm today.

I will let you know how I get on. Hopefully get this thing sorted!

Still the same

The rash hasn’t gone or even reduced. My hands are still sore and my face is still swollen. The anti-histamines don’t seem to have done anything. If I’m still the same tomorrow I will call the hospital and have a chat with Dee.

Maybe it isn’t as solved as I thought it was!

The mystery of the rash solved!

I went to the hospital this morning for my blood test and to talk to them about the rash as well.

I spoke to Dee and said I though it was the Septrin, however she had a better explanation that explains not just this rash, but the others I had as well and it all makes sense.

Dee suggested that it wasn’t the Septrin, paracetimol or Anti-biotics. Allopurinol one of the drugs I'm taking is the cause! Dee asked me a few questions about when the rash occured and the schedule for the other drugs I'm on and is convinced it is the Allopurinol, and I have to agree. Basically I take Allopurinol every day, it is an anti Gout drug (odd I know). The reason I take this is that the combination of drugs I'm taking produces various acids to be secreted by the Kidneys these acids can then cause Gout. So why don’t I always have the rash, why does it come and go? Well the answer is the Dexamethazone. The Dexamethazone that I take on a pulse cycle stops the rash and is a good preventative for the Allopurinol side effects (see below). So the we have been blaming the wrong drug for the side effect, rather than it being the Paracetimol, which Dee explained would be unusual but not impossible, or the Anti-Biotics it is the Allopurinol. Dee has now told me to stop taking it.

I know what you are thinking, how come I can stop taking it? Well I should back up a little bit to the blood test I had today and the reason I was at the hospital. I have regular tests and reviews to discuss and manage how the treatment is going. Last time I was there as mentioned in a previous post, the regimen was working very well. Today’s results are just as good, if not better. My Paraprotein levels have reduced, leaving the good white blood cells and my overall Globulin levels (blood count) is up from 8.3 to 9.4. So the treatment is working really well. What this means is that my body wont be producing the acids that it first would have been while the paraprotein was at a high of 77. They can safely remove the Allopurinol from my daily list of drugs, which will stop the rash and it wont effect the rest of my treatment.

So no more monkey hands. I still have the rash now and need to keep taking the anti-histamines until it has gone.

So what started off as a really rough day, I’m finishing it feeling quite positive.

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Side Effects of Allopurinol - for the Consumer

Allopurinol

All medicines may cause side effects, but many people have no, or minor, side effects.Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Allopurinol:

Diarrhea; nausea.

Seek medical attention right away if any of these SEVERE side effects occur when using Allopurinol:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); blood in urine or painful urination; dark urine; fever, chills, or sore throat; irritation of the eyes; joint pain; loss of appetite; red, swollen, blistered, or peeling skin; stomach pain; unexplained weight loss; unusual bruising or bleeding; unusual muscle pain or weakness; yellowing of the skin or eyes.

Find out more

Rash increased

The rash is now all over my body. I woke up this morning with my throat and face swollen as well. I have taken the anti-histamine to try and reduce it and will see what the hospital say this morning at my appointment. I haven’t taken the Septrin today, I would rather wait to see what they say.

Chemo day today

I had my chemo this morning. I didn’t take the anti sickness drug last night, it wasn’t on my spreadsheet. Yes I know … it sounds geeky, but it is the hospital that provided the spreadsheet not me (for a change). I have taken my anti sickness this morning and will have some more later on as well as tomorrow, just in case. Last time I was sick on the Friday, so hopefully now I have enough anti sickness for two days I should be ok.

Monkey hands are back

The septrin has made my hands swell (again) with a rash. It isn’t itchy, but does sting and I can’t bend my fingers properly. Similar to the allergy I’ve got to paracetamol. So just like a monkey I can’t grip things. It’s a good job I can still type :)

Christmas Tree (instantly)

Hooray for B&Q instant Christmas Trees. Nigel (my brother) told me that he had bought one. What a great idea. Within a couple of minutes the tree was up.

Some people call it lazy, I call it efficiency!.

Newsletter fix

I was just informed by Feedblitz that my subscription form for my newsletter wasn’t working. It has now been changed and should be working ok. So if you have tried to subscribe and couldn’t, you should be able to do it now.

The newsletter gets sent out each week with an overview of the weeks blog. I will also use the newsletter to keep people informed of any other activities going on; such as the Parachute Jump being organised by Amy.

Got through the day

Managed to get through the day OK. My hip was still hurting, but bearable. I took things very slowly. I got upset while talking to some friends though. All of my emotions are screwed up at the moment because of the drugs and everything else. 

Getting upset while at work, isn’t a good thing, but can’t be helped and I’m sure the people I was with understood. They  were very good and gave me a hug. I hope I didn’t make them feel too uncomfortable.

Sign up to my newsletter

The newsletter option on the blog has now been set up. If you don’t want to check the blog out every day, I have set it up so that a weekly newsletter is sent to anyone who subscribes. I will also use the subscription list to send out various other bits that are not contained in the blog that might be of interest as well. For example to keep people up to date with the progress of the Charity Parachute Jump that Amy is organising. To join simply enter your email address in the sign up box and follow the instructions or fill in the details below. (if it works!)

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My Life with Myeloma http://mylifewithmyeloma.blogspot.com Sean Tiernan

I’m back on Facebook

Well I have enabled my Facebook account again. If I have set it up correctly, this post should not only go to the Blog and Twitter but also to my facebook page. Fingers crossed.

I have lost my taste again

My taste seems to have gone again, but this time worse than before. I can’t really taste anything at the moment but really strong things. I had my meal which didn’t taste of anything, I was just chewing. I couldn’t eat it as it was so bland.

I then tried the ice cream which was what I could really taste last time it happened. The vanilla I couldn’t taste at all and the mint and choc chip I could only just taste. I can’t taste apples either. I have just eaten a packet of Worcester sauce crisp, which has some kind of flavour to it. I think this is caused by the increase in the Thalidomide tablets I'm taking.

My leg/hip is hurting

I don’t think the chair is good for me at work. Spending a lot of time at my desk doesn’t seem to be doing me any good. By this afternoon my leg/hip was really hurting.

Since being home I've taken some of the strong pain killers to try and reduce the pain and hopefully be ok for work again tomorrow. I can’t really take the pain killers during the day as they will make me drowsy and I wouldn’t be able to drive or concentrate on anything.

Twitter now available

Hopefully you should be receiving the updates again now on Twitter. I have got them to open to the IP address to me.

Can’t Twitter from work

Sorry to anyone who is following the blog via Twitter. The Twitter site is blocked from work. I will try and get it unblocked for me at some point.

Starting to suffer a little now

I’m feeling it today now. I’m sitting here at work aching again. My hip/leg is starting to hurt again. I don’t really want to start walking around as it seems to aggravate it. I only have a couple of hours to go so might as well stick it out for now. At least when I am home, if it doesn’t get any better I can tell the pain killers that will knock me out tonight, rather than during the day.

Getting ready for work

Right i’m going to get my shower and get ready for work. Not sure if I will last all day, but will try.

I need to take my tablets after and inject myself with the usual Tinzaparin. I’m also taking my new tablets again today Septrin (Co-Trimoxazole) hopefully they wont make me feel sick, but I will let you know later.

Cant sleep

I’ve been awake since 3:33am this morning. I think the Dexamethasone won the battle tonight over the Thalidomide

Feedburner Problems again

A bit technical, but I have had feedburner problems with my blog again. It stopped the blog working again, so I have given up on using it and moved over to another RSS feed. This one should be a more reliable than the Google Feedburner. It also enables me to do email newsletters etc that I will be setting up at some point once I have got my heard around it.

Parachute jump update

A few people have shown interest in the parachute jump and want to know more details. I have spoken to Amy and she has all the information that you need. For further information please contact Amy on her email address which is mimilou20@hotmail.com she has given me her permission to post it here for you to contact her directly.

Para mi familia en Peru

For those in Peru who want to read more about Myeloma in Spanish.

Esto es para mi familia en Peru. Todo es en espanol circa Myeloma.

La International Myeloma Foundation Latin America está aquí para ayudar a todos los que luchan contra el mieloma: pacientes, familiares, amigos, cuidadores y la comunidad médica y científica.

Tired after shopping

I’ve been out doing a bit of shopping today. Probably over done it a bit. I met up with Nigel (my brother) and Anne for a coffee, they have been over here from Barnsley for a couple of days. Me and Charito went around TK Max. Standing around for a long time in the shop and not sitting down didn’t really do me any good. I started to get the shakes again. Since increasing the Thalidomide to 150mg a night I seem to get the shakes in the morning. I feel rather tired now and just resting for a while. I have to be careful about how much I do as I am still Anaemic and run the risk of falling below the level where they want to give me a blood transfusion if I get too much out of breath and have no energy to do anything, which I am trying to avoid as much as possible.

Twitter

If your not on Twitter, why not? I would love to know what you are all doing during the day and what you have been up to. All my post on my blog are automatically linked to twitter so you will know when I create a post. You can add me on Twitter sean_tiernan

You can update your Twitter via your phone or email or log on to the site. There are various apps to update twitter both for you computer or your phone.

So go on…. why not join in and create your own Tweets?

Red Wine

Red Wine, Resveratrol, And Multiple Myeloma: The Evidence Is Promising, But Needs Further Study

Parachute Jump

My three children are planning to do a parachute jump in aid of Myeloma awareness. I have contacted Myeloma UK about support material and promotion and will let you know what they say when I get a response back from Lawrence.

If you wish to get involved or sponsor them let me know and I will put you in touch with Amy who is organising it. I think they are looking at doing the jump in about August so you have plenty of time to get involved.

Myeloma Infoline 0800 980 3332

Myeloma.org.uk has an infoline that you can call with any questions you have. You don’t have to be a cancer sufferer to use it. It is free and they will provide help and advice to anyone. You can find more information here

Hospital appointments

I have two appointments arranged for the hospital. One on Friday 11 December and the other on the 23 December.

The 11 will be for blood test and the 23 to get the next cycle of treatment and meet with Dr Lee again.

Good day today

Today has been a good day. No pain or sickness or anything else. I have felt almost normal today. Did a bit more at work and been shopping at ASDA.

All the decorating is finished and new carpet fitted today. So hopefully more days like today through the rest of my treatment will be good.

Allergy

Well the aching leg/hip has gone; however I found out I am allergic to the paracetamol! While I was in hospital I came out in a rash. They thought it was the Antibiotoics and so change to a different type and gave me antihistamines to clear it, but I now know that it was the paracetimol. While I was in hospital they put me on a drip of paracetimol to reduce my temperature as well as the antibiotics. I have had paracetimol before without any problems, but it looks like the strong dose they gave has triggered a reaction. From the two tablets I took last night I woke up with my covered in a rash and my fingers swollen.

I called the hospital team to see what other pain killers I can use apart from the paracetimol. I told them about the pain in my leg and the problem with my hands turning into monkey hands (couldn’t grip properly as it felt like all my skin had tightened up and looked very chubby). I can’t just take any painkillers as they can effect my myeloma. They have given me a prescription for Codeine Phosphate, it was either that or Morphine.

The pain in my leg is no longer their today, but they have given me the Codeine in case I have any more pain, so I have it to hand when I need it. They will make me drowsy so I can’t drive when I take them. So any time I have bone pain I will need to stay at home and rest. Lets hope that doesn’t happen too often.

I have been taking the antihistamines throughout the day and the swelling and rash has almost gone now.

I also had a dentist appointment today and had three filling done. So today consisted of a numb face and monkey hands.

Anonymous questionnaire

I forgot to mention that the questionnaire is completely anonymous so feel to ask any question you like. I wont know who has asked it. Someone has already asked a question about my sex drive which I will answer in a post at some point!

A simple questionnaire

Aching leg

Typical … one of the questions Dr Lee asked me at my appointment this morning was if I had joint pain. I didn’t I actually felt really good. Went back to work and at about 4 O’clock I started to get some pain in my right leg/hip. I came home had my tea and tried to rest, but it was still aching. I went for a lie down and took some paracetamol to ease the pain, which helped for a while. It is still aching now but not as bad as I am just sitting here resting. If it continues tomorrow I might give the team a call at the hospital to get some advice.

Responding well to treatment

I had my appointment at the hospital today with Dr Lee my consultant. I have just finished the first cycle of the CTD treatment so it was a catch up of how I am doing and what they will be doing for the second cycle.

When I arrived they took the usual bloods and then I had to wait about 20 mins before seeing Dr Lee. He brought up my case on the computer and already they had the results from the bloods they had just taken. That impressed me, I was surprised at how quickly they turned them around. He ran through the results and there were lots of them on the screen. One of the more interesting bit was a graph showing the paraprotein levels before starting the treatment to where it is now after 4 weeks. Dr Lee was very please with how the myeloma is responding to the CTD treatment. He explained that a normal persons (always knew I wasn’t normal) level for this reading was 35 (not quite sure what this reading but I was happy to listen) before starting the treatment I was 85; however already just after 4 weeks mine had reduce to 37.5 which was pretty impressive.

The minimum amount of treatment they give anyone is 4 cycles, normally it is at least 6. They are looking at only giving me the 4 as I am responding so well.

He has also made some alteration for this next cycle. One of the good things is that I only have to have one day of the cyclophosphomide (chemo). He has increased the Thalidamide from 100mg to 150mg a day. This is what is having the most dramatic effect on the myeloma. He has also started me on a cycle of Septrin (co-Trimoxazole) which I have to take on a Monday, Wednesday and Friday. Unfortunately this comes with side effects, which can be either sickness or a rash. Hopefully I wont get either, but knowing my luck I will get both! I am also on Bonefos (Sodium Clodronate) now which I have to take everyday for the rest of my life to strengthen my bones.

I have a new spreadsheet with all of the tablets on showing which ones I have to take on which days etc for this cycle. The list so far is:

• Cyclophophomide
• Thalidamide
• Dexamethasone
• Allopurinol
• Fluconzole
• Ondansetron
• Tinzaparin injection
• Lasopraz
• Co-Trimoxazole
• Bonefos
• Movicol
• Lactulose

I had to wait over an hour for the pharmacy to get the prescription together at the hospital, but I came away feeling really positive with the results so far. I hope to continue with the good progress so far and then look at getting the bone marrow transplant sorted in about 12 weeks time.

Back into the swing of things

So far so good. A little tired but a good day today. Started getting back into the swing of things and dealing with a few issues. I’m not pushing myself too much at the moment as I have found that my concentration doesn’t last and I get tired quite quickly. So i’m having plenty of breaks and just taking it easy.

It is Rachel birthday (one of my staff) tomorrow, although she is off then so we have given her the present and card today along with lots of chocolate and cake. Which has been good and I feel a bit sick after stuffing my face with far too much cake !!! Don’t tell Charito though as she will tell me off :D

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.

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.

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 :(

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.

Temperature back down

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

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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.

Comments

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

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.

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

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.

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!

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.

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.

It 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.

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.

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.

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.

Thalidamide
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…

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

Fluconazole
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.

Ondansetron
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.

Lansoprazole
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.

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).

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!

Dentist

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 :-)

Sleep

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 :-)

Family

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.

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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).