What a Roller Coaster

Since my last post. I don't seem to have been away from hospital, or have stopped thinking about hospital at all. I had an appointment on the 8th of March, I went in feeling okay about it. By the end of it I was a bit of a wreck. I couldn't believe it. I had been told there seemed to be a change in my bloods and that the consultant wanted to make sure what it was. A Bone Marrow Biopsy was booked for the following Tuesday.

I turned up to the clinic with my friend anxious again Biopsies aren't a particularly nice experience (I won't explain what happens in case you are eating) but one I have to go through to get to the bottom of whats happening inside. The young lady doctor called me in. I took my friend in with me and there was one of my nurses called Mary in there with me. After a quick explanation of what was about to happen the doctor asked me to loosen my trousers lie on my left side and ease my trousers down over my hips. During the biopsy I heard her talking about a little man downstairs. I am sure she was talking about a patient, but as I was the one lying there with my trousers down I did wonder. I Felt faint during the biopsy and a little uncomfortable as it went on. I did squeeze my friends fingers at one point so much that I must have stopped the blood flow to them. They looked bright red afterwards. 

The biopsy finished I was given an appointment to come back on the 27th March for the results. My friend and I had two weeks to take in what was happening. If the truth were known neither of us could get it out of our heads. It was a horrible time trying not to think bad things, trying not to think about it at all, though it was in your head all the time. The time came for my follow up appointment and the doctor came to see me, It looks as though you are showing some signs of a secondary condition called secondary acute myloid leukaemia.Which affects the bone marrow. He tried his best to explain it but a lot of it went over my head, I was on auto pilot again. It turns out that the condition can happen occasionally in people who have had chemo but it isn't very common. He Said there were a number of things to consider in treatments one was blood transfusions and another Stem Cell Transplant but this time with donor cells and not mine. The best candidate would be a sibling if I could ask my brother if he would be willing to be tested. In the mean time he would like to repeat the Bone Marrow Biopsy and have another test ran to double check some results. 

Same routine again the same lady doctor did the biopsy and a nurse was there with me as was my friend. The doctor started and it was as uncomfortable as the last time. She kept saying that I had strong bones. Not sure whether that was good or an apology because she was working hard and it was uncomfortable for me. the biopsy was over again and I was given another appointment for a follow up. I had the 10th of April to look to for the results. that was after the Easter weekend and bank holidays, more days to sit and think. Again my head was full of thoughts I tried hard to block them out but it was hard. Both my friend and I came to the conclusion that at the very worst another Stem Cell Transplant was what I had to face and anything else is a bonus. 

The 10th came around and how nervous was I. It wasn't helped by the fact that the doctor saw me and said he would like me to have more bloods taken. Then while I was having them taken he kept coming in to see if I was finished as he wanted to see me as quickly as he could. That made me more nervous and my veins just disappeared. they had to bring in a specialist nurse  just to take my blood.  

When we got to see the doctor and after he went through the doctor speak about what treatments he had to consider if this happens. Then what he would like to do because one  condition hasn't changed and after all the long words that no one but doctors can understand. I asked him if in his opinion it was good news. He replied yes it is and I think for now I would just like to watch it and follow the condition with blood tests and maybe more Bone Marrow Biopsies in the future. But he said that he still wants me to see the transplant team on the 23rd April and come back to clinic on the 3rd of May.

 My friend and I left the room floating again we couldn't believe how after so long a time of thinking dark black thoughts and thinking horrible things about what if's.That he said it was good news. I wish the doctor would have started with good news and not dragged it out but he got there in the end. 

Sorry it is long but I hope when you read it it helps you in some way. I hope you find like I did that even through a dark rocky Roller Coaster the light can still shine in the end. 

Happy Birthday to me. My Stem Cells are Three

Three years ago today I had my Stem Cell Transplant and that was the day that I started to get better. The early days after my Transplant were heavy going and not very pleasant but from the day that I was released from hospital 17days after my transplant I have steadily become stronger and stronger. 
I cant run up stairs two at a time, I can't run  marathon but why would I want too. I can walk quite well now, I still wobble from time to time.Stairs are still a bit of a problem for me. Sometimes I have a little sprint in my step, often commented on by my friend. 
This last week or so I have felt tired and weary, But that is mainly down to my B12 injection being due. I had them on Friday and by Saturday I noticed the difference, I wasn't sleepy mid afternoon and managed to go all day without a snooze. 
Thursday Coming the 8th is my next hospital appointment at clinic. I am anxious about it a little bit more than usual, probably due to the problems that I had with explanations at the last one. But I haven't had any phone calls from the doctor so in my book no news is good news.
Today is to say that three years on, I feel good. I feel stronger and I know that tomorrow I will feel stronger still.  

Coconut cake and Confusion

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

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

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

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

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

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

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?

 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

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

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

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

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

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.