Sunday 31 January 2010

40) RSPB Big Garden Birdwatch

Not much to report since Fridays blog, I start Steroids tomorrow and we will see how they go.
This weekend is the RSPB Big Garden Birdwatch, we counted the maximum birds between 2pm-3pm this afternoon, the song thrush, doves and blackbirds came in 2 by 2 along with robin and pigeon. I have been trying to register on the RSPB page for the last hour but I think half the UK must be trying too.

Friday 29 January 2010

39) Protein going down......thankfully

In December the first indication that the myeloma was back was the increased level of proteins in the blood, it had increased into the 40's. Today's reading was 18, showing that the valcade is having the desired effect, we do need to get it down to single figures but at least its going in the right direction.
My platelets are still a cause for concern having today dropped to 25. It has been decided by the prof to keep me off valcade for 4 weeks to give the platelets chance to settle and hopefully hold there own without outside help. For the next few weeks I will be on a higher dose of steroid to counteract the effect of no valcade.
We are very pleased with today's results and the fact that the protein level is playing ball with us. We are aware that even after successful valcade there may only be 8-12 months before a possible second relapse so we are already thinking of plan C or is that D with possible transplants or therapies, but that's all for another day.
Very good news is that the prof has given the green light for us to take a holiday between therapies, so we can travel to Cyprus on Wed 10th Feb. THE BEST TONIC!!!!

Thursday 28 January 2010

38) Better for the break

I have been feeling better each day after hitting the no motivation wall at weekend.
We have been to Knowsley Safari Park today for a drive, (did you know that a disabled person pays and a carer goes free, Bargain)
Clinic tomorrow, it will be interesting to see how the blood results are going during this week off drugs.

Tuesday 26 January 2010

37) Another Day

It's amazing what a couple of quiet days and a fabulous nights sleep can do. I feel as though my head is my own again, and still another week to go without drugs.
It goes to show that we just need to listen to what our body tells us, that's not just me it's you lot too.

Monday 25 January 2010

36) How Do I Feel today? I'm not wasting tomorrow.

Today and yesterday must have been the most none motivational days I can remember since starting the valcade, I know cancer treatment is invasive and this just proves that I am on it. I can understand why it's 2 weeks on treatment and then 10 days off, the body just needs to build up for the next round of drugs.
I have used the phrase before and will probably use in the future

"MY GET UP AND GO GOT UP AND WENT"

Sunday 24 January 2010

35) Rach and Cancer Research Charity Walk

It is so humbling to see the effort that people put in to fight and research cancer, maybe it's because we all have family members and friends who have not only had cancer, are fighting cancer but have died of cancer. Our friend Diane who died last year said that cancer shouldn't have the same stigma attached to it as it had in recent years because of all the Research that is being done into it, she was right but so much more has to be done for all of us, we never know when or who it will hit next.

Manchester Shine is a unique night-time walking marathon, organised by Cancer Research UK. My friend, support and blog watcher Rachael is walking the Cancer Research Manchester Shine on the 17th April and if you would like to sponsor her please follow the link opposite. (I know other bloggers are Walking the Walk too and as soon as you send me your details I will add your links to it).
Lots of you sponsor Cancer Research in many ways so please don't feel under pressure to do another one but if you want to or haven't for a while it would be a great way.

Thank you Rach and every walker and sponsor.

Saturday 23 January 2010

34) Back to normal

Today's the day, Back to normal, the football at Warrington Town is back after weeks of waiting for the weather, there hasn't been a match since before Christmas.
I know some of you think Mick and I are mad for going, maybe we are. I know Avi and Ann are looking forward to us getting there (or from under their feet).

Friday 22 January 2010

33) Whitlow (side effects) but a good day

At hospital today and all seems to have gone well.

I didn't have the nebulizer today because the chest infection has cleared. All my blood tests were good with Hb up to 13.1 (good) platelets only dropped a little to 39but I now haven't had extra platelets for 2 weeks so maybe a turning point. Neutrophils now are up to 4.6 without outside help so this should help fight off further infections.

All little steps but as I said, maybe a turning point, its the path I have to follow so lets follow it.

With most good news there is a little cloud, my little cloud is a very sore whitlow on my right index finger, probably brought on by the steroids and valcade, I have been given Erythromycin antibiotics for this so lets hope it goes (sure it will go fast).

Sorry its all a figures blog today but all relevant, I know lots of you like to be updated with the facts as well as the fun.

Thursday 21 January 2010

32) 8th Valcade tomorrow

Have had a good few days with a few numb fingers and a tiredness but now ready for valcade and antibiotic nebulizer tomorrow and then ten days without. That will be the end of the second of a possible eight cycles.

Wednesday 20 January 2010

31) Leaving a comment on the blog

I know a lot of you leave comments on the blog and I thank you for that, its great to know you are looking at it. (I know lots of others are looking at it because of the emails, phone calls and messages that I get, thank you).
Some of you have said you would like to leave comments but not sure how to, here is a quick lesson.
Click on the comment box below the blog that you want to comment on, move down until you see the white box saying post a comment, write your comment and sign it, click on the select profile drop down box and select anonymous (if you haven't got a google account), finally click on post comment..... thats it, easy.

Thanks for blogging ( go on, give it a go)

Tuesday 19 January 2010

30) Steady Results

We arrived at hospital at 9.00 and went straight for blood tests. The results were steady, the platelets, neutrophils and white blood cells were all at an ok level without outside help, (for the blogging medics the HB was up 1.0 at 12.7.) A good day makes you stand tall and feel altogether better (puts an extra inch on your height, and seeing as myeloma sufferers generally loose height thats a big bonus).
The last few days I have been feeling tired and as though the drugs are starting to take over but that is expected so no problem, it does help when you know what side effects there might be.
Next hospital visit is Friday so will be looking for some more good results, I am sure that there will be hiccups along the way but at least I know there is support there for us.
Just for the record, Averil is such a fantastic support, she lets me do so much which makes me feel good helping but she always keeps an eye on me and calls time on what I am doing if she sees things getting too much for me (which they often do). Averil you are a star. THANK YOU.

Sunday 17 January 2010

29) Quotes

I think we all have a quote that we like, so I will start you off with my favorite.

If you have one that you wish to add please leave it as a comment or email it to me and I will add it to comments for you. Lets share a few.

MY FAVORITE QUOTE

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear. (Nelson Mandela)

Saturday 16 January 2010

28) A Good Saturday

Today we started a new 100 Club at church, we had a good turnout at the coffee morning and a really positive response to the new venture, (anyone wanting to support it please contact me, only £2 per month)
After the medication yesterday, steroids this morning and the 100 club, I was still feeling active so I went for a walk around town ( if I hadn't the steroids would probably keep me awake tonight). Now I am home and ready for a relaxing evening.
Another good day.

Friday 15 January 2010

27) Good Blood

Had a good day at hospital with the results we wanted. The injections boosted my neutrophil count from 0.6 to 11.4 so we are now seeing if they will now stay at a safe level on their own (still staying off salad but don't tell anyone). My platelets have stayed at 46 which is a good sign. I have had the valcade drug and am back at the hospital on Tuesday for more.
Looking forward to a good weekend starting with a meal with friends, bring it on. Hope you all have a good weekend.

Thursday 14 January 2010

26) Awake with the steroids

Sounds like a title for a film, but this happens most times on the second day of steroids, I only had about 3.5 hours sleep last night so hopefully lots tonight before hospital tomorrow (and more steroids).
Will have to wait and see what the blood results are in the morning before final medication for the day is decided upon. Whatever the outcome the evening will be spent at Adam and Julie's with Mick and Ann for a nice meal......... Sounds like a great result to me.

Wednesday 13 January 2010

25) Lost and Found

Last Thursday I was clearing heavy snow from the car, after I had finished I noticed my wedding ring was missing, my fingers must have shrunk in the snow. We all looked but the snow was thick, Bob even brought over a metal detector but to no avail. I was 95% sure it was in the garden but a 5% niggle that it might have fallen into the road or fallen off the car when driving. Today I went out and there it was "Alleluia"
I think it's a trip to have it made half a size smaller tomorrow.

Tuesday 12 January 2010

24) Valcade Today

I have been to hospital today and have had the cancer drug Valcade, we were out by 12.30pm so a quick day.
My platelets were ok at 47 (normal is 150+) my platelets usually drop with valcade but I had no valcade on Friday so they seem to have held their own over the weekend. My neutrophils are low at 0.6, if they drop to 0.5 they probably wont give me valcade on Friday, I have been given a growth hormone injection to administer myself at home (2 injections a day), this hopefully will boost my neutrophils. I am now back on the self help neutrophil diet where food has to be served very hot and not able to have salad because of the high chance of germs on the salad (not all bad then). If anyone would like to support me and avoid salad it would be great (I know Mick will support me)
Good news is that I do feel well and from all accounts look well too, this has to be a plus. I have great faith and great faith in the hospital, these 2 together will see me/us through.

Monday 11 January 2010

23) Sleepy Monday

Today has really been a sleepy Monday, I just had to do as my body was telling me and rest. I did get out a little this morning but that was all.

Tomorrow is a hospital day again so lets go for it and see what happens.

Mmmmm steroids for breakfast.

Saturday 9 January 2010

22) Thoughts of the week

I was receiving my donated platelets yesterday and thought "THANK GOD FOR DONORS", they give blood, plasma, stem cells, platelets and other life saving blood products out of the goodness of their heart. THANK YOU. Since being 18 I have given 30+ pints of blood but for obvious reasons they don't want mine anymore (I can understand that, there's lots of it I don't want either). Do you or have you thought about donating?

This is now moan time.
Why is it that I see so many people on mobile phones, as we have been driving around in this terrible weather we see lots of people on their phones while they are driving (on Kingsway on Thursday I saw 13 drivers on their phones in a queue of no more than 120 cars)!!!! WHY?
From our hospital visit on Friday morning to Saturday evening we have seen more than 15 drivers jump RED LIGHTS in this terrible weather!!!! WHY?

Moan Over, I feel better now.

Friday 8 January 2010

21) Long Day At Hospital

We left Warrington at 7.30am when the temperature was -10. Arrived at Royal Liverpool Hospital about 8.30 ready for blood tests and Clinic.

My Platelets were their usual low(or lower at 27, mine are usually about 150, what is a normal 47 years mans level please GP Runner) so it was decided to order more in which unfortunately weren't arriving until 3.30pm ish. I had the Pendamatine antibiotic nebulizer (is that the correct spelling) at 11.30.

We left the hospital for 3 hours and decided to go for a carvery lunch at Otterspool and then get the weekly shopping (there was no danger of it defrosting in the boot), then back to hospital for the platelets which eventually arrived at 4.00pm.

It was decided this morning that I wouldn't have the cancer drug Valcade today because Christmas had mixed the cycle up, the cycle usually runs Tuesday-Friday for 2 weeks and my rushed through cycle was running Friday-Tuesday for 2 weeks, so I start again on Tuesday (hope that makes sense). I did have my steroids this morning in anticipation of the valcade so now I am bouncing off the walls (nothing new there then).

Just had email from BBC North West Tonight. Manchester Ship Canal Photo Published. Click on the RED and Scroll through.

Wednesday 6 January 2010

20) Even the Manchester Ship Canal is frozen



Its lovely looking at all the photos that we now see from around the area on tv and facebook, the snow has definately taken over the media.
I was in Stockton Heath today and saw the frozen canal, I have seen it frozen before but not as much as this, I saw a swan struggling on the ice, I watched for a while and was pleased to eventually see it make it to the bank.
Lets all remember the birds that can't find food at the moment, can you imagine what it must be like to suddenly find all your food in the freezer and not having a microwave.

Please have a look at all my SNOW PHOTOS

Tuesday 5 January 2010

19) Milkman




The snow falls and the world comes to a stand still, the schools close, the roads block, trains stop, Golden Square shops and car park are closed, airports around the country close but our milk gets to the door.

Thanks John for delivering our daily pint.

Monday 4 January 2010

18) Eye Test


One of the early signs of myeloma is a weakening of the eyes, I have been advised to have regular eye tests (annually).
I had an opticians appointment today and guess what, I don't need reading glasses or varifocals anymore...... How does that work???

Saturday 2 January 2010

17) Side Effects

A couple of the expected side effects seem to be starting, nothing too bad but little changes.
Tiredness seems to be there most of the time (at the moment I wake up tired), the other feelings seem to be the expected numbness in my fingers (a little awkward picking small things up).
There are several little changes like loosing taste, muscle pain and a cough but I can easily cope with that.