My Myeloma Journey

Coconut cake and Confusion

2012-02-19T14:11:00.002Z

Over the last few days I have noticed that I am starting to get tired around 9pm. My eyes are heavy and stinging and I become very weary and yawny I know that my B12 injection is due in a weeks time and I usually feel weary around this time in its 3 month cycle.
I never let it stop me though. On Thursday I went out with my friend to our favourite farm shop. Last time we were there I had just been told that my protein levels had risen and it wasn't a very happy time for us. This time we both had happy smiley faces and were bouncy. Cheese and Tomato toastie and a Bacon sandwich with custard tarts to follow, mmm yummy. We both thought that the fillings were a little cold but hey! we are happy so what the heck.
As we left the farm shop we got stuck behind two tractors, we didn't have a plan as to where we were going but said. no matter which way the tractors went we would go the opposite. at the next roundabout they turned right so we turned left. We were on our own Magical Mystery Tour. (I'm sure there is a song in there somewhere).
The sign said Corbridge so off we went, we traveled through places that we have recognised or thought we had been to before. We travelled up hills and through some very peculiar smells, you can tell we are in the countryside. The music in the car was playing away we were laughing and having fun, what better day can we have. We see a sign we recognize Blanchland 7 miles we like it there. off the road we turn and head towards a sleepy little village. Chitter chattering as we go who would have thought I would get lost. All of a sudden we are climbing toward the sky with sheep lining our route, we were supposed to have turned off and headed down into the village. how could I have got confused its not hard to get too. All roads lead to each other as they say and we kept going for a few miles. eventually we see a sign Blanchland 6 miles we both laugh we have traveled for miles to be one mile closer.
We arrive and take a little walk, only takes 5 minutes if that to walk around it but it's a sleepy village and we like it. We stopped for a cup of tea and a piece of cake. My friend had some coconut cake and I had some lemon drizzle cake. It was probably the best lemon drizzle I have had on our days out.
Today we both have happy smiley faces, we are laughing and having fun. This is a special day out for us, it has got rid of all the bad memories of last time we went to our farm shop and our eyes are sparkling again. We are happy happy bouncy bouncy!

Dark Clouds Gathered Then The Sun Came Out

2012-01-24T19:43:00.007Z

The last ten days or so have been a nightmare for me. I had my hospital appointment on the 12th of January, the usual anxieties were in my mind and my tummy was churning. No change there.
This time the consultant said there has been a spike in my protein levels in my blood, but it was in the next band across. I wasn't sure what that meant but he said not too worry. The only thing which really settled in my head was protein levels in my blood had spiked. My friend and I left the room not floating like we had expected but flat, down and teary. We met one of the nurses in the corridor, she told me not to worry but the seed had been planted already I was starting to cry and think bad things my mind was racing.
We went for our usual lunch at our favourite place only this time we were in tears. We ordered our meal, we didn't enjoy it in fact we left without finishing it. Much of the rest of the day was a mish mash of tears and thinky times. I rang my nurse who said I wasn't to worry too much about it as my consultant has requested to re-do the test and that it could be that the sample of my blood had been contaminated. That the next time it was tested the result probably will be good and that I should ring in a week to find out what the result is. We did have a few smiles but I still don't know how we got through that day. I thought that this whole horrible thing was starting to rear it's ugly head again, I know my friend felt the same.
So in the next ten days my mood was up and down, days filled with tears and emptiness and some days when even smiles broke through. Mostly they were flat, my friend felt the same as I did. We asked each other countless times a day. How do you feel? our answers were usually the same I'm okay but....
A week passed and we were picking ourselves up and got ready to ring my nurse. Can you imagine the feeling when the nurse said. Result pending can you ring back on Monday it should be in then. we spent another weekend worrying and trying to pick each other up. I was so teary on the Sunday it was difficult to stay level headed that day.
Monday came and it was time to ring the nurse. My protein levels had gone up again. How could they if my sample was contaminated last time surely this time they couldn't be. What does this new band mean? I asked. I'm not entirely sure said my nurse but I will email the consultant and ask him then get back to you on Wednesday. I feel let down again this can't be happening what's going on? Who can help me? My friend suggested looking on the Internet for some answers. I did when I got back to work but it was all in medical speak and didn't make much sense. I rang the help line. I did get an explanation that they felt the new band may not be bad thing (it may be down to light chains).
I'm not sure who suggested it why or when (my head is spinning now) but why don't I ring my consultant and ask for a simplified explanation. I made an appointment for a telephone call with his secretary who said she would get him to ring me as soon as he could.
He called me this morning I explained how I felt and that I was confused and wondered if he could clarify it for me simply.There is a bad band of protein which has bad cells in it called the gamma band. In that my protein levels remains UN traceable. next to it is a band called the beta band and that has good protein cells in it. My protein has risen in this band though they remain well within the normal range. They could have risen for a number of reasons.but he is convinced that it isn't because of bad protein. He said that 99% of the plasma cells are likely to be good cells. The reason why he is convinced are that my white and red blood cells, my haemoglobin and plasma levels have remained stable and I have no bone pain or tiredness. in his words. All is good!
I rang my friend to tell her the good news, we both felt like the weight had been lifted and that we were floating again.More tears but this time of happiness and joy. How happy are we now. I bet you can guess. Floaty Floaty Happy Happy.

Jools Rools

2012-01-01T20:11:00.002Z

I went with a friend to see Jools Holland at the City Hall in Newcastle. It was the Wednesday before Christmas. We had the seats we wanted with the best view, I'm not telling you exactly where or else you will all want them and when we want to go next I won't be able to get the seats.
Anyway in we went the seats we like are upstairs so now for my mountain climb. Four big flights of stairs and quite steep. As usual I was conscious of people around me and me slowing them up, or worse they are thinking bad things about me having to be helped up them still.' Forget about other people'. I was told they aren't looking and to be honest they weren't its just in my head.
I got to the top in quick time, I think that I must hold the world record for assisted ascent of the stairs while clipping everyone of them with my right foot. It still doesn't like going up stairs. I have scraped all the polish off the toe of my right shoe. I wonder if you can buy shoes with on left shoe and two right ones, surly someone must do them like that.
We got to the top in pretty quick time, then I had one of them forgetful moments. Instead of turning left and climbing four more stairs to our seats as we should have done. I said it' this way and headed for the door through which we could see seats, lots of them. But not the ones we wanted, nope the way I had taken us meant we had to walk through between some rows of seats to find stairs that were almost as many as the last two flights I had come up. When we eventually got to our seats I was shattered and pleased I could sit down. But like my friend said. 'You almost ran up those stairs, this time you didn't have to stop on the way up either'.
The house lights went down the warm up act came on and he was very good, then after a while Jools Holland came on. He was fantastic my feet never stopped tapping all night long. I even managed to stand up and boogie woogie a couple of times. we had so much room we could spread our legs out, a few times I was almost horizontal. (Much to the jealousy of the tall man opposite who could hardly fit into the space between his seat and the one in front. He left his coat on all the way through the concert too, he probably couldn't move once he was sitting down). I don't think Jools minded me being stretched out, we could still see him.
When the concert finished we waited as we usually do until everyone had left, so that I could go downstairs without holding anyone up. More damage to my shoes on the way down. I will have to look for that supplier that gives one left and two right shoes.We had a short walk to the car then a slow drive back. we had a fantastic night.

Good news in the press yesterday

2011-11-29T12:10:00.002Z

My friend told me to go to the Mail Online website. There is an article about Multiple Myeloma. I was straight on it.
The article said that they have identified a gene that they say causes MM. Thats great news for us all now that they have found the gene hopefully a cure wont be far away. Good news all round.
I am a happy little bunny and have to say had shed some tears of happiness yesterday. I have put the link below hope you get a chance to read it.

www.dailymail.co.uk/home

in the search box type Myeloma

i hope it helps you

Easy Peasy

2011-11-04T09:55:00.015Z

I had a Consultant appointment yesterday, as usual I was a little anxious. I got into see the consultant fairly quickly it was one of his registrars as he was taking a holiday. I got asked the usual questions, I filled in any blanks by saying that I have had no aches and pains or any infections since my last appointment. All the time that I was talking she kept saying Easy Peasy.
I jokingly said that I had decided already that I was well and just needed the official word. She said she wished everyone would decide that before they had got to the clinic. All the same she told me that my white and red cells have stayed the same. My Neutraphils (immune system) are still low she said it was 1.3.
The most important one my Paraprotien levels still remained un-detectable Easy Peasy she said. Then she said I think we will extend the time you next come to see us to ten weeks instead of eight.... Yay!!!!
As we left my friend and I both beamed at each other. A special start to a special day.

Easy Peasy!

Nothing To Tell You But I will Tell You Anyway

2011-10-14T00:15:00.001+01:00

Like the title says, I have nothing to tell you, but I will tell you anyway. I have been doing well recently no more new pain, except the problem with my elbow.
I had a couple of days when I had a wobble, one or two patches of emotion when I cried for no reason about nothing.
All in all nothing has happened no bad things. The good thing is I am having some really good days and that is fantastic for me to say. As you know I used to write about bad stuff that has happened and today there is none of that, just me saying everything is fine 'A OK' on top of the world and no problem. Bring on my next challenge or my next mountain to climb. I am stronger physically and mentally than I have been for ages.
So like I said earlier I have nothing to say and as my friend says I waffle sometimes, so I will love you and leave you and hope this helps you in your own journey.

All Is Well

2011-09-11T12:52:00.001+01:00

What can I say, the consultants first words as I sat down on Thursday were. "Your Paraprotien remains untraceable". They are the best words ever, it didn't matter that my Immune system still hasn't come back up. The consultant seemed happy with where it was. I still have to be careful about infections but I that's fine by me, my other levels he said are fine.
My friend and I both floated out of his room again not hiding our delight. Off we went to have our celebratory apple pie as usual, this time we decided to have a picnic at one of our favourite places too. It didn't matter that it rained and we couldn't get out of the car, It's such a beautiful place to be.
We had a fantastic weekend together last weekend, we laughed and joked had a lovely meal and visited our favourite places. We even drove to a pub and asked for a cup of tea, we were surprised that we were the only people in, in the middle of the afternoon.
On Sunday We went to Weardale for some Apple Pie and then off to our place by the river we love to sit. A special weekend with lots of happy smiles.

Stess! What stress?

2011-07-21T18:02:00.000+01:00

I am enjoying life I feel happy and having a lot of laughs lately. I don't have anything to worry about and I won't worry about anything. I feel good, I feel happy and most of all I feel well.
I have felt well for a long time but I did let the little things get to me, all of the little things have gone now and they have no place in my head any more.

Happy! Happy! Happy! Bouncy! Bouncy! Bouncy! That's me.

Sunday Fun

2011-07-12T19:31:00.004+01:00

I picked my friend up and we set off for our favourite Farm Shop of all in Weardale. This is the place that sells the Apple Pie that I mentioned in my last consultant post. They serve the best apple pie in Weardale.
After we had our fill of yummy pie, my friend and I drove to a little park and decided to take some exercise. Or should I say have some Frisbie fun, we played Frisbie for about 10 minutes. I got out of breath, did some stretching and jumping but we laughed so much. I even managed to run a few paces. How good is that!
I feel so much better now than I have done for a long time, things are looking up for me in many ways now; including my health. I have more energy than I have had for ages and I am laughing more and more.

My Saturday

2011-07-12T18:44:00.002+01:00

I went out for a drive this weekend with my friend. We decided to go up the coast to a little place called Seahouses, it's the first time I have been there and wasn't sure how to get there. But off we went. We drove through what seemed like 2 different weather zones, it was sunny then it was rain, big a splashy bouncy rain, then it was sunny again. We found a nice farm shop called The Country Barn farm and coffee shop, where we stopped for tea and cake.
When we got to Seahouses the sun was shining from on high. We started to walk around the small seaside town and then down to the small quay where the boats were moored and looked out to sea toward the Farne islands.
My friend and I decided to go for a little walk but to do that I had to climb a hill, I walked up it so fast not only was I out of breath at the top but so was my friend. When we got there (only about 100yds top to bottom but it was steep), my friend suggested we should have a game of Crazy Golf we laughed all the way round the crazy golf course, we both had holes in one. We both took a lot of strokes to get into holes but we laughed and laughed.
When we went back to the car we decided to go for a little drive up the coast about 2 or 3 mile to see Bamburgh Castle. What a magnificent building it is so imposing it domineers the area. Our Drive back was again through some bad bouncy rain but both my friend and I had massive smiles on our faces.

Hospital Appointment

2011-07-08T18:57:00.002+01:00

I had my consultant appointment at clinic yesterday, I was anxious as usual. My tummy was churning my head was full thoughts. I feel good I know there isn't anything that feels wrong or bad. But all the same it's the same every time I go to clinic.
I booked in as usual and sat down with my friend, within minutes my name was called to get my bloods taken. So far so good, though I had put 2.5kilo on. Not sure how that happened (well maybe I do). It's now my tummy churns most, the time between bloods and seeing the consultant.
Within just a few minutes my name is called, my consultant is standing up, not looking at my notes and shook my hand when I went in. I get worried when he does that it's usually bad news.
'How have you been feeling.' he asked, I told him I felt good just my elbow to complain about. He said that was good and started by saying. My red cells are up, my white cells are up. The best news is that My Paraprotein remains undetectable and my Light Chains are within the usual band.
All in all I think we were in the department 15mins that must be a record. My friend and I once again floated out of the department with another appointment for 8 weeks from now. How good is that.
Now where's that apple pie!!!!

Feeling Good

2011-06-30T18:09:00.002+01:00

My health is good, my back hasn't been painful for a while. Cod liver oil tablets have done the trick, I haven't had much pain since I started taking them a few weeks ago now. my walking is quite good and not long ago i managed a fair distance too.

It feels good knowing my aches and pains are not worrying me for now and long may it continue. Forever looking forward, forever looking upward and most of all forever being positive.

I'm not sure how many people out there are reading my blog, but I hope that it helps some one who is fighting their own battle.

For me next thing I have on the horizon is another consultant appointment on the 7th of July 2011. They still make me feel anxious but I feel good and have no need to worry. It will be another good result I am sure

Quite A Good Week

2011-06-18T17:47:00.000+01:00

This week I have been to see one of my customers who told me that I was looking well and in good health. Then on Thursday I went to my GP surgery to be given my suppliment injection of B12. The nurse who was giving it to me and one other who seemed to be there for just a chat both told me I was looking well.

How do I feel? Bloomin fantastic, how good is the feeling of being told you look good. It's priceless I am walking on air. Long may it continue.

Cold In The Nose

2011-06-07T21:55:00.001+01:00

I have had a cold for about 10days now, it hasn't been heavy, mainly a runny nose and a fuzzy feeling behind the eyes and at the top of my nose.

It seems like I have been eating paracetamol and drinking beechams for ages now. Today I feel better than I have for 10 days. Thankfully at last it seems to be lifting.

When I called my Nurse she said a lot of patients have complained of colds not lifting for 2 weeks and a little more. But advised me to keep taking the tablets and if it doesn't clear go to see my GP.

Thanfully I don't have to do that and today I feel 100% better and bouncy again.

Clinic Day

2011-05-13T19:05:00.001+01:00

I went to my clinic today. I wasn't as nervous but still anxious as I usually am. My results last week were good, so surely today couldn't be any different. Still my friend had to hold my hand to calm me down and keep me from tapping my feet and shuffling around.

I was right, the good news is My bloods are fine and my Paraprotein is still untraceable. All my levels are still going in the right direction, so all is good there. I asked about the pain in my arm, he said. 'My x-ray had come back clear and that it can only be soft tissue damage similar to Tendinitis or tennis elbow'. It made my friend and me laugh inside as that's what she had said it was a few weeks ago.

So apart from taking Cocodamol and resting it, there isn't much to do, as it can take up to eight weeks to put itself right. Before we left he gave me another appointment eight weeks from now. Everything is rosy as they say.

No News

2011-05-07T12:07:00.000+01:00

I know it has only been Three days since I was at hospital getting checked out. I would have thought that if there had have been something showing on my x-ray the Doctor would have rang me by now.

So I am working on the principle of no news is good news. However, I will take the question with me to my consultant on Thursday. My arm still aches and still when I pick something up the sharp pain is deep inside my elbow.

Pains

2011-05-05T17:48:00.004+01:00

My elbow hurts deep inside when I pick something up, it can be anything from a calculator, a cup of tea or a kettle with only a little bit water in. It seems to be anything that puts a strain on my elbow. I have had the pain in my elbow for nearly 3 weeks now.

I contacted my specialist nurse the other day, who suggested I pop in to hospital for a check up. I rolled up to the day unit as arranged and had my blood taken as usual. The results came back good so there is no problem with them. It took 2 hours for the doctor to come around and see me then prescribed a visit to x-ray and brought my clinic appointment forward 2 weeks to discuss the results, that is if there isn't anything she needs to ring me and talk about before hand.

Just What The Doctor Ordered

2011-04-02T15:08:00.002+01:00

On the 24th of March I went to see my consultant, I waited anxiously in the waiting area. I had my bloods taken and was weighed (my weight has gone up). In the few minutes that pass between bloods and seeing the Consultant. I watch people coming in and going out and try to guage how soon my turn will come about. My tummy is churning, my heart is racing I hate coming here. My friend turned to me and smiled and gave a squeeze of my hand. I smiled back and all is well again.

My turn does come around and I follow the nurse to my consultants room. He asks the usual question. How have you been? I tell him fine no problems and wish he would just get on with it. He looks at the computor and turns to me and says. 'Your white cell count is up, your red cell count is up. Your light chains are within the normal band, but you Neutrophils are still low. However, they are at the highest level I have seen in you so I am not too worried just be careful around infection'. My hand was stretched out searching for my friends but I couldn't find it.

I remember thinking just get on with it tell me the bit i am here for. 'Your paraprotein levels remain not detected so all of that is good'. He said. Once again we floated out of his room. In the lift i gave my friend the biggest tightest hug I could. We both are so happy now.

Two Years On

2011-03-04T09:04:00.001Z

AT 11.30 on the 4th of March 2009 I recieved my Stem Cell Transplant. Two years on at my last appointment my consultant said that my paraprotien was still untraceable. I know that at my next appointment in two weeks time he WILL Say the same thing.
Though I still get nervous when I go to see my consultant I take comfort in the fact that he is looking after me and that he only has my best interest at heart. Its only when he says the words 'Paraprotien is untraceable' that I begin to relax again and float out of his consulting room.

Another Good Month - But More Appointments

2010-11-22T23:00:00.001Z

Thursday the 18th saw yet another appointment at clinic for me. For some reason this time I was very anxious about it. No reason to be as my consultant said. My hb was good my red and blood cells were good and stable. My immune system was still low and I should avoid infection and if I did get an infection ring my team straight away. The best news is my paraproteins are still untraceable. No sign of the Myeloma. Yippee!!!
Now I start a week of appointments for the Diabetes. On Wednesday I see the Dietitian, who no doubt will tell me to loose weight and stop eating cakes, biscuits and sweets. and eat more fruit veg and exercise more. Then on Monday the 29th I get my eyes scanned and feet checked. Oh great joy.
Still bouncy bouncy happy though just like tigger xx

Onset of Type 2 Diabetes

2010-11-02T19:02:00.000Z

The results of my glucose tolerance test shows that I have the onset of Type2 Diabetes. I have had an app with a nurse that runs the diabetic clinic at my GP practice. She advised that I avoid fast sugars, such as cakes, sweets biscuits all the stuff that we all like. Concentrating on the food stuff in the carbohydrate range and protein ranges. The kind of stuff we don't like such as more vegetables more fruit and white meat such as chicken also some fish courses.
I was also told that appointments would be made for me to have my eyes and feet checked and another one for me to see a dietitian to advise me in the way of eating. Oh great joy!!
I am off to the bookies now going to put a bet on..... I have a touch of Asthma(though it doesn't really bother me), a thyroid problem and Myeloma now they have said Type 2 diabetes. So the bet is can i get pregnant by Christmas.

Glucose Tolerance Test

2010-09-29T20:12:00.001+01:00

My glucose tolerance test came around quickly. I had to fast from 8pm last night until my test finished around 10.45 this morning.
The nurse took my blood then made me drink what tasted like liquid sugar then asked me to wait in the waiting room for two hours until she next took my blood. I asked why wait so long. Its to make sure you just sit and don't do any exercise or work off the glucose while you are working.
Sitting in a doctors surgery for two hours isn't much fun. coughs colds, splutters moans and groans. I wonder if she knew about my compromised immune system. You get some funny looks as people go in and out of the surgery and your name isn't being called out.
All I have to do now is wait for the results. Another week of waiting for results.

Another Hurdle

2010-09-23T15:49:00.000+01:00

I am still going to the gym. my stamina is still increasing. However, my walking distance isn't bad but is still not great. my right leg and hip still aches and my right foot still scuffs when I walk, but progress is being made.
I saw my consultant today. He tells me that my bloods are picking up nicely. the platelets are OK, white and red cells are picking up. My Neutrophills are still low and I am still vulnerable to infections and should be careful. the good news is that my Paraprotien is still un-traceable so I have another clear month.
The hot flushes I have been suffering have been increasing and often have three or four in a day. I have experienced some bad ones that seem to take it out of me I have to sit for a while to recover. My care team have tested me and its definitely not to do with my Myeloma and suggested I talk to my GP.
The tests have been taken more blood believe it or not. i have had two sets of them and now I have to have another fasted Glucose Tolerance Test the GP tells me that I am in a pre-diabetic state. More tablets perhaps who knows but I am still smiling.

Still Clear

2010-07-31T19:46:00.000+01:00

I have been having some flushes recently, starting at my head and running down my chest. I spoke to my nurse who started me on a course of blood checks, urine checks and a heart trace which all came back clear.
The consultants registrar on Thursday didn't seemed too concerned but did say I had to call the team if they become worse or worry me more. As far as my clinic results are concerned. My platelets are up, my haemoglobin is up. My neutrophils remain low but haven't changed so that's good. Best news of all my paraprotien has remained un-traceable. So another clear month for me.
I did tell him that I was going to a gym not sure what his reply was as I was still hearing no paraprotien again this month. However I have progressed at the gym. I am now using two machines each of them for half an hour at a time. My stamina is building up, not sure about my walking or the distance I can walk yet, I still seem to wobble when I walk and my right foot still seems to scuff as I walk.

I Have Started To Go To The Gym

2010-07-15T18:00:00.001+01:00

I went to the gym yesterday for the first time in I don't know how many years. The fitness instructor was very kind, he listened to all of my do's and don'ts. Then took me into the gym itself.
I used a cycle machine for about 7 minutes and a cross trainer for 11 minutes. He wouldn't let me work any longer than that for the first time. However, he did say that if I feel up to it he would suggest trying to get to the gym 3 times a week, all for short sessions like yesterday. The sweat was pouring out of me, but I did it.
I am a little achey this morning but much better than I thought I would be. I am aiming to get there tomorrow energy permitting.

8 Week Appointments

2010-05-31T11:08:00.001+01:00

My Appointment with my consultant went well on Thursday. All my levels have lifted, and my paraprotiens have stayed untraceable again. He is very happy with my progress and to be honest so am I. I m now taking some exercise. Not every day, but every other day to build my stamina up. I have started walking more and have achieved some fair distance. Not quite a marathon yet but Linford Christie may be impressed. I can do one hundred yards in about 5 minutes. WOW!!!
The upshot of the appointment was all of my bloods were good my B12's weren't mentioned so they mustn't be causing a concern. And he has now put me on an 8 week appointment cycle. I must be going the right way.

UPDATE

2010-04-13T19:44:00.000+01:00

Since my last entry I have been to see my back specialist. He told me that the problem at the base of my spine is wear and tear not much except pain relief, exercise and lose weight will help. The disc in my spine is a little more worrying. He feels the operation to put it right may be too much for me just now and unless I am in pain or discomfort all the time. He would prefer to not do it.
I went to see my Haemotologist last week too. He said he is happy with my weight and if I feel comfortable with it, he wouldn't say I needed to loose any. The conditin remains clear and I have been put onto a six weekly appointment. so good news there.

I will keep you posted.

GOOD NEWS!!!!!

2010-03-11T18:30:00.005Z

It has been a while since I have posted, so here is just a quick update. I have seen the bone man now. He has had me undergo some nerve function tests. It seems that the disc that is at the top of my spine pushing against my spinal cord is causing problems for me. I will herar his outcome on the 1st of April.
My body has forgotten how to produce the vitamin B12. to compensate that, I have had to have a course of 6 B12 injections to build it all up. And possibly all I would need after the levels have picked up again are booster injections every 3 month.
Best news of all I have kept until last. The hematology consultant today said the best word that anyone can hope for. He said that I have reached REMISSION - yeah that's right REMISSION
I am floating now that's a word I so wanted to hear after all this time. Happiness for me today. Long may it continue.

Bone Man

2009-12-15T19:28:00.002Z

I visited the Bn man last Monday 7th December. He said the damage to my spine had nothing to do with my Myeloma which is good news.
The problem seems to be skeletal which is old age, not helped by the fact my tretmnt has left me less active and unable to do much excercise. that has left the muscles in my back weak. As time goes by perhaps they will build up in time.
At least now i know why i get all of the problems

Someone listened to me rant

2009-11-24T19:57:00.002Z

Someone must have listened when i went to my last clinic appointmentt. The consultant worked his magic I have now got an appointmenrt to see the bone man. 7th December

December is a busy month i have Cancer clinic on the 3rd. Bone man on the 7th and bloods on the 11th at my docs. this week i have my swine flu injection too. I'm going to be like a pin cushion for two weeks.

At least someone listened and hopefully i will get sorted out now.

Why Wouldn't She Listen

2009-11-11T21:53:00.005Z

On Thursday the 5th November I went to m clinic armed with some questions I needed answering concerning my back.The stand in Registrar the 7nth i have seen since Simon moved on asked me if I has seen Mr Cross? When I said no she said thats right it said in his letter that he didn't need to see you.
I looked puzzled by this comment and she asked why so i told her. I don't see why he has said that he doesn't need need to see me, I know i have a spinal condition that doesn't need surgery but i have a lot of questions to ask about the pain the future etc.
Her reply was simple, I am not a bone expert so i can't answer your questions. I asked who can and was told Mr Cross. Who by the way i pointed out didn't want to see me. I asked if she could ring him for me instead of sending a letter. I was told I don't have time I have a room full of patients to see and I haven't read your note properly.
Imagine how that went down.... i asked why she hadn't read my notes if she was seeing me. I was told because it a busy clinic and she was running late. I asked again about my pain and my future. I was told this isn't getting us anywhere I suggest we move on and talk about your Myeloma. (PP untraceable. Neutrophills 1.3)
I told her not to be bothered it's obvious she wasn't interested in me as a patient. Her reply was you are all important. I asked her if that was the case why couldn't she ring the Bone mans secretary for me. her reply again was I am busy.
I told her if she can't be arsed then I cant give me my next appointment and told her i never wanted t see her again. She promised to ring me at 1.30 that afternoon to tell me she had contacted the bone people. she actually rang at 4.55pm. when i pointed that out she told me not to be awkward as she had had a long hard and arduous ward round and she didn't need ant grief from me.
in reception after my nurse had ran out to hold me back I broke down in tears saying she isn't listening to me she isn't bothered about me. All she wants is this room cleared.
Well a consultant rang me next day and asked if i wanted to talk to him. I went to see him armed with another list of questions. He said he couldn't answer them all, but did answer some. He offered to ring the bone man and get the answers to he rest for me. he asked me if i want him to ring me with the answers or just tell me in the next clinic. I opted for the clinic, he then asked what i wanted to do about the registrar, told him never wanted her anywhere near me again. He said he would make sure that happened.

Still have pain

2009-10-25T21:02:00.002Z

Well I have had another month with untraceable paraprotien in my blood which is good. But when i mentioned my back and the fact that I haven't seen the bone man, the consultant said that he would ask a Secretary to ring them. Mind you that was only after he had said he would write another letter to chase him, and i said it's ok i will ring him because i was sick of waiting.
the Secretary did ring and then rang me back. it would appear though i have pan the bone man doesn't want to see me because i have no malignancy.
how does he know that i don't want to see him.
I am in pain and have loads of Questions and am getting very angry now. someone best answer them on the 5th of November.

Still No News

2009-09-30T20:19:00.002+01:00

Well it's been forever since I told my consultant that my back was hurting. I know he sent me for the MRI but in august he told me he was referring me to the Bone Man.

Here we are just getting into October and I still haven't heard from this mysterious bone man. I do know my back hurts when I sit, stand and walk. What I don't know is what he is going to tell me that I can do to bring some relief to it.

Ho Hum, I am back at Cancer Clinic on the 8th October so watch this space as they say.

OUCH !!!

2009-09-10T20:47:00.001+01:00

Well I went to hossy for my monthly blood check, I was determined to find out what the results of my MRI scan is. The scan was in June and despite me asking in the July clinic at which I was told that they can take some time but my stand in doc would chase them and let me know.

It got to August clinic and still no word, so I made my mouth go a little. This time it was my own specialist that said he would chase it and ring me. Ring me he did, but he said that rather than tell me over the phone he would tell me in clinic if we didn't meet before. but there was an unusual degenerative condition there that he could see. He would prefer a bone man to look at it.
I have spent all of August wondering what he means, what is degenerative and what spinal condition. When was the bone man going to contact me and what the heck does all of this mean. My head has been in and out of me like you wouldn't believe.

Today the heamo asked as soon as I walked in have I seen the bone doc..... no i replied should I have he hasn't contacted me. do you know what it said about your scan he asks............. no you wouldn't tell me on the phone i said. Ah.... he said. well, it looks like the disc at the top of your spine is pushed in and resting on your spinal cord and there are three discs in your lumber region that are crumbling. But the good news is it has nothing to do with your Myeloma.

Imagine my head now. What is my future. It gets harder to fight and fight. I thought being told that you have had four clear months of this Cancer I was doing well. But it looks like you are given something good then its grabbed from you and you get something bad to deal with again.

OK that's it I've had my rant

New Challenge MRI Results

2009-08-31T19:43:00.003+01:00

I got sick of waiting for the Doctor to ring me with the results of my MRI scan. he said he would chase them during my last Cancer Clinic appointment, that was 6 weeks ago. It is now ten weeks since my scan.

I rang my specialist nurse Anita, who told me that the results were there but she couldn't interpret them. She would have to ring a Doctor who would get in touch with me. Simon my consultant rang me and apologised there has been some mix up and i should have been told the results sooner.

It seems that the results now show that I have something called a degenerative spinal condition. according to Simon this could be anything from Arthritis to a dissolving of the discs. It all sounds very big and horrible to me. I do have back pain, I do stumble when I walk and my hip hurts after being on my feet for a while. All of these Simon says could be factors in the condition that I now face.

Simon is refering my scan to a bone man for further analysis and has suggested I dont worry too much until we know for definate what it is that I am facing. (Easy for him to say). Well I am worried and I am thinking about it, it has been two weeks now since my conversation with Simon and the bone man still hasn't been in touch. I have a Cancer Clinic appointment on the 10th of September, if I don't hear anything before I think the big guns will come out. ITS MY LIFE AND I WANT TO KNOW WHATS HAPPENING TO ME.

Frustrating

2009-08-24T18:01:00.002+01:00

Just when I start to think that I'm doing OK. What happens? My body slaps me in the face and tells me it isn't. Yesterday I got up at about 9.30 had breakfast and was asleep again before 10.30.

Not only that but I slept most of the day up until 7 ish in the evening. Gorr it's so frustrating to think a couple of years ago all I would have is an afternoon knap, not now my body tells me it is gonna sleep all flippin day. Ho Hum .

First full Week

2009-08-09T16:42:00.002+01:00

Last week was my first full week at work. By full week I don't mean monday to Friday. I mean a full working day full week. 8.00 am until 5.00pm.

I thought that I was ready for it, but my body knows it isnt. So maybe it's time that i listened to it and rested for a while. So I am going back to workinf 10.00 till 5.00pm for a while. To see how I cope.

More Work

2009-07-22T18:09:00.002+01:00

I have extended my working day from: 10am till 3pm now 10am till 5pm. I didnt think such a small increase would tire me so much but, after only three days I feel wrecked.

Ah well I suppose that it shows that my body still needs time to recover. But my finances say it's time to work, it's such a fine balance isn't it.

A Result

2009-07-16T20:04:00.002+01:00

My consultant told me today that there are no traces of protein in my blood and there hasn't been since my Stem Cell Transplant.

I cant help feeling that I am on a high. Floating like a balloon on helium.

No MRI results though so that was a downer, but nothing is going to stop me enjoying my moment.

Wondering

2009-07-15T22:31:00.002+01:00

Well tomorrow I get to see my consultant again. I get my blood taken, he asks how i am doing. This time I should get my MRI results. So we will wait and see.

The thing that worries me most is, both my daughters have friends that are either in Quarantine or have suspected swine flu. I need to get some info now and fast I think.

If I said I was a little scared to think what might happen if I caught it, it would be an understatement.

Waiting again

2009-07-12T23:52:00.002+01:00

I had an MRI scan 2 weeks ago now and am waiting for the results. I suppose i will get them when i visit my consultant on Thursday. I hate the waiting and I hate the fact they don't send you any letters, just make you wait.

This weekend I ventured out on my own in my car, I drove to Stoke, only 183 mile there and the same back. But I did stay the weekend before traveling back.

I did it but really felt shattered at the end of the journey, maybe it was a little too far to drive on my own. but you gotta set your goals haven't you.

Radio Star

2009-06-22T17:09:00.002+01:00

I was asked by the news team at Sun-FM if i would do a radio interview today. to help promote Myeloma awareness during National Myeloma awareness week.

It should be aired in the next couple of days

Tired

2009-06-14T20:15:00.002+01:00

This weekend I have been so tired, I don't know why. I slept most of Saturday, when it came to bed time I didn't feel tired and stayed up until about 1.00am. That wouldn't have helped any.

Tuesday I was back in the chemo day unit, not to have chemo but to have a rash that I have developed looked at. It is so itchy and results in bumps under the skin when I have rubbed or scratched. The consultant thinks that I am allergic to something and gave my intravenous steroids to ease the effects. They seemed to work well but now It has returned. Going to see my own GP this week to see if they can sort it out for me.

I start the third week of work tomorrow maybe it's that, that is making me feel so tired. But I need to return to some normality. Some good news is that I have been approached by a local radio station to do a piece on air about Myeloma during national Myeloma week next week.

Back To Work

2009-06-02T20:15:00.002+01:00

I went back to work yesterday, with the agreement of my consultant I am only working part time. I had thought that I had regained my fitness, imagine how surprised I am that I feel so tired.

It feels as though I had never been through the massive treatment that i had in March. I don't know why this surprised me i knew that it would be difficult when I returned to work. I will have to build myself up a little at a time. It's a little like taking exercise. One step at a time.

More Good News (I think)

2009-05-21T14:15:00.003+01:00

I had an appointment with my consultant this morning. He is more than happy with my progress, he suggested that I can return to work on a part time basis with definatly no lifting.

I told him about my walking, the pains in my knees and that one foot drags sometimes causing me to stumble. After some small exercises in the consulting room. He decided to send me for an MRI scan on my spine.

So good news in one way bad in another.

Aches and Pains

2009-05-10T18:04:00.002+01:00

I seem to be getting increased aches and pains. pain in my back, aches in my calf muscles and pains in my knees. I feel sure that the aches and pains in my knees and calf's could be to do with the exercise, but my back is worrying me.
I have an appointment with my consultant on the 21st of May, so I will chat about it then.

Sussed it out

2009-04-27T20:35:00.002+01:00

I have sussed it out, the reason why i felt flat over the weekend. It was my cancerversarry on Friday. Yeah that's right the first anniversary of me being told that I had this blooming awful cancer.
Well at least that's sorted, now i am like Tigger, bouncy, bouncy, bouncy....... lol

Feeling Flat

2009-04-25T17:37:00.001+01:00

I Just feel as flat as a fart today and yesterday, don't know why. I am not worried about anything I feel stronger than ever. Just must be one of them things

Happy Birthday To Me

2009-04-17T17:01:00.002+01:00

Well it's my birthday today I am 50yrs old. To celebrate it I had to attend hospital for my routine blood tests (all turned out fine and are almost back to normal). I also had my Hickman line removed, which is quite sore now.
However, I count this as one step closer to getting better.

A bit flat

2009-04-16T16:41:00.002+01:00

Don't know what it is today, I just feel a little flat. I have a hospital appt tomorrow for bloods and the removal of my Hickman line. But that doesn't usually bother me.
It is also my birthday I will be fifty. But birthdays don't usually bother me either. Maybe all the exercise I have taken this week has caught up with me. I have slept a lot today.

Chuffed to little naffy breaks

2009-04-15T17:40:00.002+01:00

Yesterday I managed to walk about one mile in a round trip to the village and back. Yes I was tired and I did fall asleep to recharge the batteries.
Today wow... my wife Ann said that Steven our son in law was going to take her to Asda. Can you imagine the surprise when I heard my voice saying. 'I will come with you.' I know I was certainly surprised.
Anyhow, I did go with them. I did walk all the way round the Asda Superstore (not just a small shop). And yes I am no officially knackered.................. time for some shut eye.

First consultant App, since my transplant

2009-04-09T20:48:00.002+01:00

My appointment for my bloods today was at 9am. My Consultant app was for 10am. Not too bad considering it sometimes takes about 30 to 40 mins before I am seen in blood clinic. Today however, we set out from home at 8am giving us plenty of time to get there during rush hour. What happened in reality was we arrived in less than 25mins. A slow walk up to the ward from the car park only wasted 10mins.
So in I went for my bloods, there was one lady and myself in the unit. I looked at the clock 8.50am, mentioned to the nurse that I was due in clinic at 10am so she could take as much time as she wanted to. Then the consultant came in to the unit. He was ready as soon as the patients were clear. Said he would see me as soon as my bloods had been taken.
At 9.10am I was in the consultants room. Wow!! He informed me that all my blood levels had risen, except that I was slightly anaemic but not to worry about it. He was very pleased with my progress and would urge me to keep up the exercise and the walking. I was out of there by 9.30am and on my way home. Hooray for holiday traffic.

Stronger every day

2009-03-28T14:59:00.002Z

I have been to the hospital chemo day unit to have my bloods taken 4 times since leaving hospital. Each time I have been told that all my levels are on the up. my red and white cells up, my platelets up. Everyone is very pleased with my progress.
I feel stronger each day, better than yesterday my tiredness is waining and i can stay awake for longer periods now. Well that really depends on what i have done during the day. Ann took me to get some drawing material the other day, to revive my old hobby of sketching while I can't work. When I got home I slept for 2 hours.
If we walk for even a short distance I need to sleep to recharge my batteries. For someone who was a late night early morning bloke (after midnight before bed and up around six). I don't seem to get up until 10.00am no matter what time i go to bed.

Getting Stronger

2009-03-23T11:38:00.002Z

I went into hospital on the 2nd of March for the start of my transplant. On the fisrt day they hit me with some massive chemo, Melphalin. Which apparently kills my bone marrow, cell and any cancer it can find. one of the side affects of this was I had to eat as many ice lollies as I could in the time it took to administer the treatment. I can't count the amount of times i had to go to the loo either.
Tuesday the 3rd was good. My transplant was on the 4th, i was transferred from Sunderland Hosp to the RVI at Newcastle Via an emergency ambulance with Blues flashing. (my first time in an ambulance and I was getting the royal treatment). The cells when they came back into my body had a strong smell of tomatoes and a similar taste, which hung around for a few days.
My bloods showed that i was still quite strong and was allowed home on day release for 3 days. But had to return every day for blood tests at 9.00 am.
On the Sunday I went into hospital complaining of feeling unwell, I wasn't allowed home this time. Instead straight back into my sterile room. I remember lots of nurses and doctors visiting me. But to be honest that is the last I remember until the Wednesday. I was told that having a temperature of 39.9 and no immune system did cause a stir. It is rumoured and i can't prove it, just what a nurse told me. That the overnight on call doc was camped out on my ward just in case.
I endured ten days of the tummy runs. Eventualy almost begging someone to stop them.
I still feel so tired and weak but everyday is different. I do feel stronger today, but have been very emotional during the last three weeks.

What a Week

2009-02-25T22:59:00.002Z

So far this week I have had a complete skeletal x-ray, a kidney function test. Before Friday I still have to have a pulmonary function test and an echo cardiogram. all on different days.
Why cant hospital departments get their heads together when booking appointments I am shattered.
I have to be in Hospital for 9.15am on Monday bed or no bed. the care team will make sure when my chemo is finished my room will be free.

Transplant

2009-02-22T18:15:00.002Z

Well, I have the dates for my Stem Cell Transplant. It is the 4th Of March 2009. But before that can happen during this week I have to have a Kidney Function Test. An X-ray of my chest and a Heart trace.
Then i can enter hospital on the 2nd of March and be greeted with a massive dose of Chemo to kill all my existing Stem Cells and the rest of my Cancer. I get transferred by Ambulance to the RVI at Newcastle on the 4th to receive my cells.
Transferred back to Sunderland the same day, and prepare for my 3week stay in hospital in solitary confinement. (Or is it a sterile room).

I am on my way back to good health!!! yippee

In The Bag

2009-02-13T14:18:00.002Z

Well at the begining of the week I thought this wasn't going to happen. but, on Wednesday and Thursday, we got enough cells for one transplant and one in the bank for the future.
So all I have to do now is wait, I see my spacialist on Tuesday I hope we will have some idea of dates for the future.
Feel relaxed now for a change.

Feeling Flat

2009-02-09T16:20:00.003Z

On Tuesday last week I was taught how to give myself an injection of Growth Hormone that I need to stimulate the growth of my Stem Cells before their harvest next Monday. What a horrible feeling when you have a needle held against your skin.
On Friday last week I attended my blood clinic as usual. Everything went well untill I was told that I was Neutrapenic. (very low or next to no immune system). I had two options available to me. 1. go staraight home and avoid crowded places, pubs, shops and any one who might have an infection. or 2. Don't go home and be admited to the sterile ward that i left on Saturday the week prior. There was no choice, I went home.
At my Stem cell Harvest today, I had my bloods taken again. This time I was told that my CD34 count (??) was low and they would not have the harvest at this point. I had to double the dose of my Growth Hormone Injections and return at 8.00am on Wednesday 11th. Only two days time but i cant help feeling flat, crap. let down......

Been There and Done It!

2009-02-01T19:54:00.003Z

I have been in Hospital for three days not four as I was expecting (there is always a bonus). It took ages on Thursday to start the treatment but at 4.00pm start it they did. Another line was inserted to my hand and a piggyback (two outlets) attached. as well as a piggyback attached to my Hickman line.
Now this is where it gets confusing. one of the bags had to go through in 22hours, one in 5hours, one in sixhours and one in 2hours. Each time the machine alarm went off i buzzed a nurse and they attached another bag.
Anyway on Saturday after being hooked up to this drip machine for 48hours the nurse remooved the last bag and the line in my hand. flushed my Hickman line and said he would return in about an hour. He didn't but a nice young nurse called Kelly did. she took blood from my Hickman and flushed it again and said when the results come back they would call the doctor.
Doctor arrives at 4,00pm saturday, asks if i feel dizzy or any feelings of being sick. I answer no to both questions. Good he said. How would you like to go home. Just need some anti-biotics from pharmacy then off you go. (good job home is on speed dial on my mobile).

Moving On

2009-01-23T09:33:00.002Z

I thought that i was going into hospital on the 5th of February to start my treatment. Well the hospital rang me this morning. Asking if I would be prepared to start the treatment on the 29th January. One week earlier.

Wow, how things can move, so next Thursday I will be admitted to hospital for four days to undergo extensive high dose chemo........... Red cross parcels gratefully received.

New Year, New Treatment

2009-01-17T19:36:00.004Z

Not much has happened since I last posted. My CTD regime ended on the 19th December to enable my body to rest. On the 5th of January I agreed to let them insert a Hickman line into me, after having problems at hospital getting blood out of my veins.

In February I start the road toward Stem Cell Harvest, with a four day stay in Hospital from the 5th. The 10th sees me start a daily injection of growth hormone and the 16th I have the Stem Cells Harvested.

Another chapter in my treatment is starting, but I have to take encouragement from this because if the last regime hadn't worked then I wouldn't be this far forward. Onward and upward my nan used to say.

Stem Cell Harvest

2008-11-29T14:13:00.002Z

At my weekly visit to hospital, My Key Nurse gave me a booklet, telling me all about the ins and outs of Stem Cell Harvest and Transplant.

We did talk about it sometime ago, but it would seem that the Doctor now suggests that it would be a good idea to talk about it just the otherside of christmas. With a view to early February or March for the procedure.

There seem many questions that I have to ask him first. and at that meeting i will be armed with a book full of them.

Next step in the healing process I think but I just need to be sure in my head that it's the right one for me.

It's Not All Bad

2008-11-17T18:56:00.003Z

I have to say, that it's not all bad, this weekend I have had quite a lot of energy. I even managed to complete a full nite shift at Grange Cresc. Without too much of a kick back.

But I am still aware thet I have to be careful and I have to listen to whats happening inside. However, I managed to walk into the village today a full round trip of about 800 yards. doesn't sound very far does it. But for me it was forever. I managed and am proud of it.

Protein Levels

2008-11-13T21:02:00.004Z

I had an appointment with my consultant today. Beforehand I went through the usual blood test, then waited for the lab to process my blood before seeing the consultant. (The whole process takes less than an hour).

When I saw the consultant he wasn't looking at my notes nor was he writing, which is unusual. Instead he asked me how I was feeling. I told him that I felt fine. That this week I seemed to have a load of energy, not quite where I was this time last year but feeling good.

He said that was good and shared my blood results with me (again this was unusual as he has only ever said that he is pleased with the way things are going).

In April when I was first diagnosed my protein levels were 47.3mg and now they are down to 12.7mg. So my consultant is dancing for joy. We are both happy that I have responded so well to treatment in such a short time. However, he did say that I will be on the CTD programme for another four cycles. (each cycle last three weeks).

Acid Attack

2008-11-06T22:30:00.002Z

i have been having some acid attacks, while I have been lying down in bed. It starting to worry me. They catch my soft pallet and cause a lot of discomfort and worry.

so much so I am worrying about it. But I am seeing my key nurse tomorrow and I think I will have to mention it to her.

Sleepy days

2008-11-06T20:36:00.002Z

Contrary to how i have felt recently when taking the steroids, the last two days have been very sleepy days for me.

Today in fact i managed to sleep in for work and was woken by my phone ringing its head off. The voice at the other end sounding worried and asking if i was going in at all today..... nice to be missed i think

Back Ache

2008-10-28T20:12:00.002Z

I have noticed over the last couple of days my back has started to ache a little. I will have to keep an eye on it and report it to the nurse on thursday at my weekly blood check session

Bit of a heavy weekend. But i survived

2008-10-26T21:26:00.006Z

Who'd have thought that being sat in a room for a couple of days, with people you like and care about, and who I hope care about me, can be so tiring.

I did very little this weekend, I joined in discussion when I needed too but otherwise as the weekend I suppose is designed i relaxed.

I survived with only a little chemo brain which to be honest cleared by 6.00 pm so I don't feel so bad now.

A big thanks to all that made it work for me. and the support given to me by those who offered it.

Support

2008-10-19T22:38:00.002+01:00

A few weeks ago I joined a website called cancer back up. ran by mcmillan. It offers a lot of support to those who suffer from various forms of cancer, and to their carers.

I particularly find that the chat room offers a kind of support that I have never seen before. A time to talk if you want too. or sit and think (read others txts) if you want too. and no pressure.

The support in its first instance is given mutually by other users, though there is a facility to contact mcmillan nurses. There are a number of groups or forums that you can either post a new topic to or simply reply to someonelses thrread.

Well! i found it helpful and thought that you might. Just in case here is the link.

http://www.whatnow.org.uk/homepage

Chemo Head

2008-10-19T03:24:00.003+01:00

This is my second session of CTD (2nd 3 week) treatment programme. Call me slow if you want but this sluggish feeling that I get always follows a Chemo day.

Now that I have that sorted in my head perhaps I can accept the bad day when it hits. And plan a restful day for myself.

I can't sleep tonight, everytime that I lie down i get an acid attack at the back of my throat. very uncomfortable and disturbing for others too. so here I am tellling you.

Good News

2008-10-17T18:50:00.002+01:00

After my blood tests today, I saw the consultant. My protein levels haven't changed so that was good news he said.

My platelet levels seem to have stayed the same so that was good he said. but the best news of all was my anemia levels have grown so that was very good news. It means I may be less tired.

I am certainly hoping so.

Weekly Blood check Up

2008-10-16T22:51:00.003+01:00

I am due to go for my weekly blood check tommorrow. It can be a bind but last week we talked about the indegestion i was suffering and the fact that i had some tenderness in the palm of my hands.

They said theat my blood would be tested for calcium levels. But I haven't heard anything so perhaps there is no problem apart from what's in my head (only my thoughts). My indegestion seems to have been helped by the extra pills that I have been given.

Anyway, I go at 11.00am. get the blood taken from me and await the visit of my consultant.

complete contrast

2008-10-15T21:35:00.003+01:00

In a complete contrast to last weeks post, I feel fine today in fact on top of the world. considering I was awake most of the night.

I couldn't sleep at all, perhaps its the steroids or some of the other pills in the regime I am taking. I don't know. I do know when I take the steroid part of the regime I eat for England and I have the energy of five men.

On Friday I have to go to hospital for my weekly blood check, I am not feeling too bad about it. But can't help thinking that since my diagnosis my time hasn't been mine. I have been given appointment after appointment and guided into the place that I am now. on a drugs regime without really expecting it so quickly. I mean I thought there would be more time to consider it before I started.

Having said that, once I had started the drugs I didn't expect to be monitored every week. I don't know what I was expecting but to drop from every three month to every week surely brought a couple of questions to the table. All I was told was to keep an eye on you.

Any way off I will go like a good boy I am and get the arm full taken await the visit of my consultant and go back next week for my next appointment.

sometimes days are good

2008-10-08T20:18:00.003+01:00

Sometimes days are good, and sometimes like the last couple days they are really bad.
I can only describe it like trying to push the world uphill in a force nine gale.

Getting up in the morning is a chore at them moment, getting dressed and going to work also hurts. when i am at work my colleagues wonder why i am not functioning. 'You are here so you should be able to work'. I hear them say.

If they only knew how much effort it has taken me to get there today. how much energy I have used to get to the office. Let alone answering the phone and talking to Customers. It seemed to be an effort just to drink a cup of tea this morning (a pastime i really enjoy). The only thing that I wanted to do from getting into work this morning was go back to sleep.

On days like this my friends suffer, I don't talk to them, Not that i deliberately ignore them. It just seems that my efforts should be concentrated elsewhere. I need all the support that i can get from all the people who can give it.

I feel selfish but don't know how else to cope with the bad days. Two days ago I was fine, it was a steroid day and I was eating for England, wide awake until the early hours of the morning. Then bump! here I am dumped into a hole that I don't like. A place that is hard to get out of and motivate myself from.

I hope the downs don't last long, they hurt so much. I am usually a bouncy person, full of fun. I hate being down, sleepy, grumpy and constantly fighting for energy.

Nose bleeds

2008-10-04T11:23:00.003+01:00

recently i have been suffering from a few nose bleeds, might have something to do with the asprin and the rest of the drugs i am taking. They are usually light ones. today was a particularly heavy one. i was all olone this morning when it happened and a little bit shaken if i'm honest.

i don't like blood at the best of times but when it's your own and flowing quite qhickly its not nice. anyway it has stopped now and i am in control again so back to normal

todays visit to consultant

2008-10-02T17:51:00.003+01:00

I had an appointment with my consultant today. It appears my myeloma is still high and my paltelets are still very low.....

so no surprise that he is continuing my treatment for another 3 weeks. I am ok with that, as i didn't think one session of treatment would eever be enough.

He also discussed Stem cell harvesting with me. Explaining the procedure, though i am not sure when it would take place.

probably when my platelets rise.

Anyway not too bad a result suppose, keep taking the tablets as they say

No Energy Today

2008-09-28T20:05:00.000+01:00

I usually am a late night early morning type of bloke, but today i didn't get out of bed until nearly 10.00am. Strange for me as my days usually have two 6.00 o'clock's in them.

My energy seemed very low, my head seemed to be someone else's (if you can understand that).
It felt as though my eyes were mine but as i walked my body wasn't responding and when it did it was a little behind me.

I even had to lie down this afternoon to recahrge my batteries. which isn't something i am used to doing. My back has been acheing for a couple of days, no great pain but just a niggle

My Journey so Far

2008-09-27T19:23:00.001+01:00

It all started i reckon about 3 years ago. i was refered to hospital by my GP due to the fact i have a border line Thyroid problem. with other presenting problems of fatigue and general tiredness.

After a lot of alterations in the dosage of Thyroxine i had been taking and my constantly saying to the Doctors i feel no different now to the day that i fisrt walked into the clinic. Finally someone listened to me.

I was reffered upto Heamotology, where i was told that they would screen my blood for a complete test of possible causes for the fatigue. And so they did, but i recieved a call withing one week to go and 'Have a chat'. I was told that i had something called Myeloma. (until that point i had never heard of it let alone knew it was a condition). A Cancer he continued not a particularly good cancer it isn't curable but it is controlable to a point...

The consultant may as well have been speaking a foreign language now, because all i heard was cancer and not curable. however, i was told of an appointment for a biopsy that i should attend the next day, and i was left to make an appointment for a complete body x-ray at the x-ray dept on the way out.

All this duly done (though i still don't know how) i went off to tell my wife and family. it was the hardest thing that i have ever had to do in my life. I live with my wife (commonly known as the witch, because of her laugh) and my 15yr old daughter. my 26yr old daughter lives with her boyfriend some 200 yrds away from us. So you can say we are sort of a close family.

They were as devastated as i was, tears all around i think. lot's of hugs and kisses and promises. that was on April 28th 2008 i remember it all too well.

i am using this blog to try and make sense of my journey and of my condition. if you would like to chip in or out or dip i and aout then feel free to do so.

To date i have started a combination treatment CTD which has left me tired and moody. I know they are side affects so not too concerned except i am not one for grouchy normally. But can't help it at the moment.