Stem Cell Harvest

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.