Ivan's Funeral

Hi Everyone

Averil has asked me to let you all know the arrangements for Ivan' funeral.
It will be on Saturday 1st May at 10.45am
The service will be held at St Mary Magdalene's Church which is in Appleton.
The full address is
St Mary Magdalene Church
Dingleway
Appleton
Warrington
WA4 3AW

For those of you who know the area it is on the corner of Dingleway and Bridge Lane.

The service at Church will be followed by a short service at the Crematorium for family and close friends.

After the service in St Mary Magdalene's there will be refreshments and Averil hopes that as many of you as possible will be able to stay and share your stories and thoughts about Ivan. Averil is looking forward to meeting you all.

As you know Ivan had some definite thoughts about how his funeral should be organised. His wishes with regards to donations rather than flowers are posted on his blog.

Mick

Ivan's Good Causes

Hi Everyone

Averil has asked me to let you know how grateful she and the family are for all your kind words on the blog and the cards and messages that have been sent to the house. She says that the flowers have been great but she is now running out of vases!

Ivan has left some clear instructions as to what should happen with regards his funeral (why doesn't that surprise us - organised to the last). One of his wishes is that there should be no flowers, instead he wants the money to go to:
a) MacMillan Nurses
b) Sponsoring a South African child's education for a year
c) Supporting an HIV group in Benoni, South Africa
d) Conservation in South Africa.

So Averil has asked that if anyone was planning/thinking of sending her flowers would they mind instead donating the money to one of Ivan's causes. If you send her the money, saying which cause you want to support, she will make sure the money gets there.

The funeral is possibly going to be Saturday 1st May. Averil is waiting so that her family can get acrpss from South Africa & that is being delayed because of the current flight problems.

Mick

The Last Post

Hi Everyone

It is with great sadness that I have to tell you that Ivan has finally lost his battle with cancer. He died peacefully at 10.15 this morning.

Your comments on his blog over the past few days say it all. He was the most thoughtful, courageous, kind and loving person I have ever had the privilege to know. I was lucky enough to have him as a great friend and I will miss him tremendously.

He loved his blog and your comments and his sense of humour have kept him going over the last two years. I hope that you will all be able to write one last comment in memory of our great friend.

God bless.

Mick

Ivan Would Call This 'Plan Z'

Hi Everyone
I'm at the hospital at the moment with Ivan. Many of you will have heard him, during his illness, talk positively about moving on to plan B and if that didn't work plan C and then D and so on. Unfortunately we have now run out of plans.

Ivan is now very ill. The doctors have said that there is now nothing more that they can do. Everyone's efforts are now going towards making him as comfortable as possible. At present he is sleeping a lot but he knows that we are here with him.

Please keep your comments and prayers coming. They are a great comfort to both him and Averil.

Mick

Another Update

Hi Everyone

First of all many thanks from Ivan for all the tremendous messages of support that you have sent him. He is still in Liverpool Royal on Ward 7Y and continuing to get great medical support from all of the staff there. The doctors have told him that the myeloma is presently very aggressive. One of the consequences of this is that he has had some bleeding in his head that is putting pressure on his brain. This is making it difficult for him to speak and also making him very sleepy.

Having said that we are still getting some great one liners - they are just a bit slower than usual! He still manages to charm the nurses, especially the young pretty ones. They often leave the room with a smile or a giggle. I try to tell them that I taught him all he knows - but it's not working!

Ivan has access to his blog from his hospital bed but I'm not sure how often he is looking at it. When I visit this afternoon I will read out all of your comments. Please keep them coming.

Mick/Mike (I really must try and sort out who I am!)

Ivan Update

Hi Everyone.

Ivan is not at all well at the moment and has asked me to update his blog. He is conscious of the fact that there are many who follow his blog who are concerned because he hasn't posted anything for a while.

At present Ivan is back in Liverpool Royal Hospital. His myeloma is back with a vengeance and the staff are presently trying to get his platelet levels up. His illness is making him very tired and lethargic and has had an effect on his speech. A couple of days ago he couldn't speak at all and this was very frustrating as you could see that he knew what he wanted to say but the voice wouldn't work. I saw him today and his speech is much better (I won't tell you what he called me!) suffice to say that his tremendous sense of humour is still there.

I hope you will keep up your comments - I will make sure they are passed on to him. Your support and prayers are a tremendous boost for him. Keep checking the blog - between us Ivan & I will keep you up to date.

Mick (Mike) Jackson

PS Ivan has already checked his blog & has had a moan to me that I hadn't updated it - give me a chance Ivan!

79) Easter Saturday

We decided to go towards Buxton this morning for coffee and cake, I am sure a few of you know the place, its about .25 miles before the Cat and Fiddle, and called the Peak View Tea rooms.
We didn't get there until about 11.45 so decided to have lunch instead. They have different salt and pepper pots on all the tables, today we had tractors, in the past we have had Police men, post men or even different styles of cake, its not what I would have for home but great to visit, the food is fab too, if you haven't been before I would suggest you have a visit and include it in a trip to Buxton.

78) Out And About

At the Trafford Centre at the moment, it's good to get out towards Manchester on the M62 rather than towards Liverpool, just a little walk for me but then back to the car for me, Averil and Jess then doing a little shop Ha ha before joining me at the car, it's then back to to Warrington for Matalan, let's see how the day goes. One thing for sure us my disabled parking ticket comes on handy.
I will try to take it easy this weekend because I really would like these platelets and donated blood to last until Tuesdays hospital visit at least, longer would be great.
So that's my day, I will take it easy for the rest of it.

(77) last planned visit to hospital before Easter

Mick and I arrived at hospital this morning at 9 and arrived home at 5 this afternoon, that was a long day.
I had platelets at 9am and then waited for tests before having the blood later, hopefully that's enough to see me over the long weekend.
I have had a whitlow again but the antibiotics seem to be doing a great job.
Good news from the day is that the calcium has settled down and seems to be stabilising. It was worth the few days in hospital last week and the visits this week.

(76) Felt good this morning

Slept well last night and when I got up I felt a little light at the end of the tunnel ( not Duracell battery by any chance but a little better).
My platelets were up to 14 and hb (haemoglobin) up to 9. No more transfusions today but blood and platelets in the morning (they are already ordered so that should save a few hours).
It's good to feel a little better and it's reassuring knowing that I am Reading the symptoms myself.
A little improvement really boosts the day.

(75) Monday at Hospital

Ann took me to hospital again today, I had blood tests followed by a bag of platelets and then a unit of blood.
Not in until Wednesday now and then maybe Thursday for a a top up to see me over the weekend. The day unit is closed over the weekend so if there was a problem I would probably have to go to the ward instead. We should be able to avoid that by sorting the blood out early.

(74) This is normal

I have asked this before "what is normal" normal changes daily, we try to get back to normal when we are probably already there.
I really wanted to go to church today and I set it as a target and we made it, it was lovely and uplifting, maybe normal is where you are are at your happiest.
The sun was out today but it was a lot colder than it actually looked.
Hospital tomorrow, we start with blood tests and then see where the day takes us, maybe blood, platelets and who knows what.
It will be a normal day that's for sure.

(73) busy doing nothing

Up, showered and shaved, it's funny how putting staires into an equation really messes things up, I have been managing with the one room ok but I had to go down to sort out my many tablets, one of the jobs before I go on is to see what I need for the new regime and what are obsolete, think it's sorted now.
It's resting time now but that's all I can do so I will do.
I hope you all have a fabulous Easter time, I will, I was having my stem cell tranplant this time last year, coming out of hospital on Easter Day. Is a year a long or short time?

(72) Back to Blogging

As you may have worked out, I went to hospital on Tuesday for regular blood tests but it didn't quite work out as planned. The calcium was very high as were were the platelets and the heomaglobin so I have stayed in hospital for a few days.
Thanks to the regular bloggers and the new ones looking.
Please add your comments and lets see how this Plan C works out.

(71) Plan C

Plan C is now in place, it's a drug called Revlimid, there are several other drugs to go with it but there are side effects drugs, things like sickness. Let's see how it goes.
The pain in the back has settlled somewhat, having changed the dose a little last night after doctors advice.

70) The pain is moving on slightly

Sorry I haven't been blogging as much over the last few days but as news is more available I will pass it on to to
you. As much as the bone marrow pain is moving will be a good sign ( and I am sure that it is) the pain hasn't moved far, only to my backside so now I can't sit down at all, this is not fun. I am convinced that the next few days will be better. I haven't been out of the bedroom for 3 days now (apart than for obvious reasons) that must be some sort of record.

69) Thats the Bone Marrow Taken

Wow, that hurt, it's now about 11.00am on Friday and I have been having sleeps in half hour bursts.
The pain was bad yesterday (please ladies don't mention child birth because I will take you on the pain factor). Two lots of fluid were taken and one lot of bone (it took 3 Attemps to get the bone) he did suggest getting the bone next week but I couldn't promise turning up again) anyway all done now just wait for the results now.

68) Extra platelets

Todays Platelets were very low at 10, The lowest they have been before was 16, I have had 2 adult bags of platelets today which seem to have stopped the bleeding, my mouth is still a little sore but the ulcers are dring out so lets hope for a nights sleep without waking looking like Dracula.
Tomorrow I have the Bone Marrow test so I have to be at hospital soon after 9.00am, I have been told that it doesn't take long to take the fluid from the spine, they then have to take a little bone for tests, then half hour lie down to make sure and then home.
BRING IT ON if its whats required and I am sure it is.

67) Platelets in the morning

Platelets in the morning about 11.00 am I am having 2 adult bags of platelets so will see what happens, hopefully will stop the bleeding.
The steroids do good but also take your energy in other ways. I am asking for stronger pain killers in the morning to try to help.
Will let you know the outcome tomorrow

66) Great Weekend

Centreparcs is fabulous, Friday evening was a struggle for me with nose bleeds and bleeding mouth ulcers but most have cleared now after starting steroids on Saturday with a continuation today, I also think it's down to be being looked after so well this weekend, everyone is great.
Mick and I have just walked to the swimming area (I couldn't have walked like this on Saturday) Averil, Ann and Jess are swimming). We are going back now to watch the GP and leaving with Joyce about 3.30 for home, Mick and Ann staying until tomorrow.
The first photo is taken from near to Ullawater, Pooley Bridge and the second photo is from the swimming area at centreparks.

65) Platelets drop

My platelets dropped again on todays tests, they fell from a tiny 23 on Tuesday to a smaller 16 today, Not Good.
It has been decided that they aspirate my bone marrow bone next Thursday ( take fluid and some bone) and see what they can find. I will be taking steroids this weekend, having platelets next Wed and the bone marrow taken on Thursday. This may change if I don't do too well over the next few days.

Lets wait and see.

Its all getting a little scary at the moment.

64) blood tests tomorrow

Off to hospital at 9.00am tomorrow for blood tests and then to CenterParcs in the Lakes for the weekend. The Camera will be busy.
The support we have had from you all from the very beginning, and the support from you all during the last few days has been above and beyond all expectations, your sincerity and humour has lifted my heart.

Will try to update the blog tomorrow.

63) not what we expected

The hospital tests didn't go to plan this morning. The velcade seems to be working on the cancer carrying protien but unfortunately it has started attacking my platelets again, the platelets have dropped from a workable 68 last Tuesday to a poor 23 this week, so I am off the drugs again and having blood tests Friday so that the clinical team can set to work on plan C at a meeting on Friday with the hope of being a little closer to answers by Tuesday morning.
I want to thank all family and friends near and far for your fabulous support and all the hospital staff who are working so hard for us. I will tell you all that goes on so that you can support us when we have not so good news and celebrate the good news when we get it. We are in this together, I am glad that you are there, THANK YOU.
I was down this morning but better now, I am always better when we have a plan/ or a start of one.

62) What did the weekend bring?

The bulb got changed but only because I went to Halfords and got them to do it, when you see the messing around to change it I think £6.49 for the bulb, to change it and a spare bulb is a bargain, why get my hands dirty.
The football was the usual standard as usual at Warrington Town but the curry was fabulous, well worth the 30 minutes trying to park.
Today was spent appreciating the change in the weather and also how blessed we are with the support of friends, not just for the support during cancer but for generally be part of our lives.
It's hospital again on Tuesday for the velcade, it will be interesting to see what (if anything) has happened to the Platelets, let's hope they have stayed high enough for treatment and that the reduction to once a week has controled my blood for the period of treatment.

61) What will today bring?

Yesterday was one of those days when I found myself exhausted at the end of the day (if I am honest it was well before the end of the day). Averil eventually sent me to bed (I think she just wanted the tv remote).
The plan for today is to change a bulb in the car, Warrington Town for football this afternoon and a curry tonight. Let's see if the day goes to plan.

60) Any side effects

I had forgotten how tired I felt on velcade, after Tuesdays velcade I have been sneaking an hours sleep in the aftrnoon to see me through the day, the tiredness might also because I have been running Jess and picking her up from Blue planet, that has been a regular comitment. The velcade also makes me a little breathless so I keep an eye on that too.
The swelling on my hand has gone down so that looks healthy enough, still a little swollen but fine.
Today with the weather being so nice I decided to give the zoo a visit with it being so close to where I pick Jess up, I went for about 3 hours, I continue to thank the zoo for the loan of the motor scooter.

Link for Zoo Photos

59) I am just a Platelet making machine!!!!

I have been to the hospital for Velcade, blood was taken for weekly records but they went ahead with velcade treatment on last Fridays platelets result of 68.
When the results came up they were all very close to Fridays results but my platelets had shot up from 68 to a massive 72, I am just a platelet making machine, 72 is still low in general but great for me.
I expect platelets to drop by next Tuesday because of the velcade but who knows. All sounds good to me.
Only had one problem, a drip was put into the back of my right hand for the blood test, fluids and velcade, after the blood test I was waiting for fluids when the back of my hand swelled in a minute to half golf ball size, it was quickly removed and bandaged (I won't play on it, honest). The fluids and velcade were then administered via the right hand and all was well.

Thanks to Dave and Di for stepping in to take Jess to her work experience at Blue Planet today. It's great having such a circle of friends who you know you can call on at a moments notice, it takes so much pressure off this difficult situation that would be almost impossible to handle on our own.

58) Sleep

Since clinic on Friday I have been thinking about going onto half dose of velcade, as long as enough drugs get into me even though its over a longer period I hope it has the desired effect, at least its being monitored over the month.
I start on velcade again on Tuesday and will let you know how things go.

Over the last 12/18 months I have been sleeping very well and I am sure this helps in recovery.
One thing I forgot to mention about the holiday, as much as the beds were comfy in Cyprus, those of you who have a tempur bed will know how good they are to come back to, ours has made a massive difference to my/our sleeping. Believe me they are as good as the adverts say.

57) What did the Prof say?

I have been to hospital today for blood tests. Platelets are still up at 68 which for my blood is good. Hb is 11.8 and neutrophils are 3.8, so all good.
I start velcade and steroids again on Tuesday along with all the other usual drugs (anti-sickness anti-biotics and anti- whatever you call it). My velcade dose has been reduced and will now be 1 per week instead of 2, the prof says this is because of my previous low platelet count and the whitlows I was troubled with.

This regime will be reassessed in a months time and adjusted if necessary.
All looks ok for the moment so that will do for me.

56) The Unknown

It's a strange feeling, we have had a great few weeks off the velcade and in Cyprus but now it's the waiting game again. I feel really well, eventhough I am a little tired, I have no reason to be negative about the results on Friday but there is always the fear of the unknown.
That's enough of that, we have 2 days to wait and I can't change what the blood says. Lets move forward.

55) Hospital

I have been in contact with the hospital and my clinic appointment is confirmed for Friday at 9.00am, with blood tests at 8.30am.
Lets hope the days in the sun have worked well on my blood.

54) If You Don't Plan You Don't Do.

It's funny when we go on holiday, if we are lucky enough we can forget any problems we have at home and enjoy ourselves, (we have the added help of knowing that my mum is well looked after by the many visits and phone calls she gets when we are away, it takes so much pressure off us, thank you).
It was a culture shock to leave 20+ degrees and then come back to the snow but that's life and let's just enjoy it all. It's important that we make the most of everything. Just think it's only a month ago that we thought there was no chance of going away and just look at the great time we have had, we plan to go again later in the year if possible, ( if we don't plan we "DON'T GO")
please have a look at the photos on this link.

It's back to medical things this coming week, I expect an appointment for clinic this coming Friday but will let you know when I know.

53) Last Full Day In Cyprus

Yesterday was our last full day on Cyprus, we still have most of Friday, we don't fly home to the winter until UK time 18.10 landing at 23.15 awaiting Fran's Taxi. (we will worry about the cold on Saturday)
Jess stayed at the hotel while I went to the market and Avi went for a walk she has been promising herself from our hotel into Pathos, with the promise or coffee and ice cream when she arrives.
The afternoon was relaxing around the pool and hotel and then the evening meal. What a great holiday we have had, I am sure the fact that we could get out in the warm weather will bring spring in the UK that little bit closer.

52) Sunset Photo

Got it.

Today we got up early and left the hotel at 8 after an early breakfast, we drove the 250 miles round journey to Ayia Napa unfortunately IT WAS SHUT, well about 90% was, we had a walk and a coffee and came back via Larnaka for lunch, eventhough the day didn't quite go to plan we still had a great time and a lovely drive mixing motorway with coast road.
When we arrived back the sun was setting and the photos were taken, even a fishing boat sailed past to complete it.

51) Market Day

I went to the Market for one thing and got it, result, a leather case for my iPod, the zip on the old one had broken and for €3 why not.
The afternoon was spent at Pathos Port where we found Ice cream, we then went to the fort and a walk round the historical mosaics, they were fantastic.
It's now about 6.15pm our time and I have been out trying to get decent sun set photo, it's not easy here because about 15 minutes before the sun would set at water level it hides behind thick cloud, not bad tonigh but will try the next two evenings.
Tomorrow we are driving to Ayia Napas, about 180 km so an early start  and that's after me planning on watching football tonight, it doesn't start until 10.00pm Cyprus time, might have a sleep first.   

50) No Ice Cream

On Sunday we went looking for a market, the hotel reception said there was a good one on Sundays in Pathos so we went to find, the only days it closes is this Sunday and Monday (bank holiday weekend) so we will go on Tuesday.
We went on to the Tombs of the Kings, a good choice, seeing excavations from hundreds of years ago. On the way back to our hotel we called at Coral Bay for ice cream only to be told that there was no ice cream because it's winter, it's "26 degrees" (I don't care what season it is, 26 degrees and that's summer I thought).
The rest of the day was spent relaxing at the hotel by the pool. In the evening there was a fire eater on for entertainment in the hotel, he also did an act of walking on broken glass and a bed of nails, Jess got volunteered to help (I was thinking of volunteering but think we might have been calling the emergency service to pull the nails out of his chest) (photo of Jess helping after 20th)
Today we set off early for a drive North to Polis and then east along the coast and beaches towards (but not all the way) the Border with Turkey. This area seems to be in a time warp with the locals living as they have for many year, it's good to see.
Back at about 2.00 pm for a relaxing afternoon at the hotel, it's good to get out and see the area but also good for us all to recharge our batterys ready for whatever we face (probably bad weather in the UK).
Started steroids again today for four days. So a breakfast of 10 steroids, Bonefoss, paracetamol, Aciclovir, antibiotics and a full English, life could be worse.

49) Troodos Mountains

Saturday was another full day. After breakfast we set off for the Troodos Mountains, (calling at a winery for a taste and a couple of bottles to bring home), what fabulous views were waiting for us as we travelled through the mountain range towards Cedar Valley, the smell of cedar was amaizing, I don't think I have ever seen so many trees, it was the same as thinking "how many hairs are there on my head"? (and I don't mean during chemo).
Further into our drive we found a dam that was completed in 2005, we managed to get through a hole in a wire fence to walk along the dam wall, it was fantastic to see the amount of water it was holding back.
We have driven about 470km in the first 3 days, so glad that there isn't a maximum mileage allowance. A couple of local days are on the agenda for today and tomorrow, but all that could change.

48) Giant Rock throwing or Rock throwing Giant

Yesterday we changed rooms after breakfast (the one we had been given was great but too much of a slope getting to it) this one is near to reception and the pool.

In the afternoon we went out driving to the Baths of Aphrodite, great drive, gardens and pools.
This morning was an early breakfast and then a drive to Limassol, some fantastic views along the coast, the best being Aphrodite's Rocks where tradition has it that the Giant Romios threw Rocks at Arab pirates. (he must have been some giant, they are massive).

I am finding that the warm weather is doing us all good, my back pain is a lot less than normal, and that's after nearly 2 weeks without steroids (they start again on Monday).

47) lovely Cyprus Hotel

After snow at Manchester we arrive last night, the hotel is great and we are looking forward to having an explore. Click on the link to see today's postcard

46) Holiday Time

We are off to Cyprus tomorrow during a break from velcade, I am sure a little bit of 20+degrees and sunshine will do us all the world of good.
We dont land until 8.30pm Wed so you will have to do without a blog until Thursday. I am told we have wifi so normal service will be resumed. (Any photos will probably be from the internet but I will bore you with mine when we get home.)

45) Chester Zoo

A lot of you know of my love of animals and also my love of photography, put the 2 together and I will probably have a great day.
I finished steroids on Thursday and start on them again on Monday 15th, today I had a few stiff joints but nothing some paracetamol and an electric schooter at the zoo couldn't solve. Averil had a walk and I went along on wheels, its great having a season ticket because we don't feel the need to see all of the Zoo in a day, just a few hours and we are happy. Another good thing about the zoo is the fact that I can walk a little and stop at another animal without others thinking that I am stopping just for a rest. I do think that exercise is important but somedays you can only do what you can do so today I took photos.

Have a look at the photos

44) The Power of Technology and the Blog

Last night I got a comment on the old blog from a 29 year old in America also suffering from Myeloma, its amazing how our therapies differ but both chasing the same goal.
We were talking about being positive and looking forward and I said how great the power of Family, Friends and Faith were, Phil said he says he has the power of the 4 F's Family, Friends, Faith and Facebook, its true, as I have said before we need to take on and be thankful for technology, how else would I be getting support and he hopefully from me from thousands of miles away without the likes of Facebook and blogs.

Have a look at Phills blog

43) Good visit to Hospital

After a foggy drive to Liverpool I had the blood tests and a coffee waiting for the results, and then the usual football banter with Jamie my Macmillan nurse and Paul in the day care unit, they both support Liverpool but I can't hold that against them, they both keep life real.

The blood results are good with the platelets that were 25 last week now at an increasing 68, not bad for 6 days, the neutrophils are 5.5 and Hb a healthy 12.1 so all looking good for Cyprus next Wednesday. The prof prescribed antibiotics for Cyprus as a precautions against infection on the plane and while away, I feel happy with that because if I were to get antibiotics when away there might be something in them that goes against my treatment.

Lets hope the valcade break helps the levels stabilise at a healthy level so that we can start again and get the protein level continuing on its downward journey.
After being out early this morning I feel tired when I get home so it was time for feet up and a rest. I must admit that the results this morning are a tonic in themselves.

Thanks for all your support and prayers we do appreciate it.

42) hospital tomorrow

I am in hospital tomorrow (Thursday) for blood tests, we just need to see how my platelets are doing before we go away to Cyprus next week, they were 25 last week and the hope is that they have gone up with having steroids and no valcade, if not I will probably have a transfusion, let's wait and see.
We bought a new camera last week ( thats we bought a new camera for me) and I am really pleased with the results. I went to Risley Moss today, click on the Red Risley moss link to see.

41) Experiments

When we were at the day centre the other day I saw the official opening plaque, one of the professors is a PROF OF EXPERIMENTAL MEDICINE. It makes you think that the whole cancer and life thing is an experiment, I must say they can experiment all they like.

What got me thinking about the above statement???? Last night I was listening to a podcast and I heard this quote "TOMORROWS CURE IS TODAYS EXPERIMENT" I like that, long may we have the ability to experiment.

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.

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!!!!

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.

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.

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"

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.

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).

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.

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.

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)

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.

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)

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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???

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.

16) New Year

What will the New Year have in store for us?
I have heard things like we must take 2010 by the throat and make it a good one, not a bad idea because it is up to us to make it happen, at the moment 2010 is a blank canvas waiting for us.
Someone said to me "I hope you have a better year" I have had a fantastic 2009, it has got me to today, I pray for as good a 2010 as 2009.

Since being told 536 days ago that I probably had 3 days to live (without treatment), life has taken a new meaning, in that 18 months we have had so much love and support, more than we knew existed, you have all been a large part of our future, thank you.

In the last year we have lived well, learning to live and enjoy life, we have been to Jersey, Barcelona and a fabulous 3 weeks with family in South Africa.

May we all have a fantasic future.

Happy New Year.......... Live it

15) Platelets

Have been into hospital for platelets, was only in for about an hour so that was great.
I now get 10 days off hospital for good behaviour (and to let the body settle) back in on the 8th for clinic and round 2 of the the velcade.

14) Airport

Up at 5 this morning after 6 hours unbroken sleep. It's great to be feeling a little better.
Have taken Fran and Rach to the airport this morning. It's good to feel useful. Hope they have a wonderful time in Switzerland.

13) Hospital again

Arrived at hospital this morning for blood test at 9.00 and eventually arrived home at about 4 pm after the Valcade

It was a long day because there were so many people having treatment after Christmas and trying to fit in before New Year

I have had some tests on my chest to confirm its geting better without antibiotics (trust me, its getting better)

My Platelets are still low (33) I have to go back tomorrow for some more, and then hopefully 10 days off treatment until Fri 8th Jan for clinic and start cycle 2 of the valcade.

12) West Kirby

Wow, I slept until 4 this morning without problems with my chest infection, I do believe its clearing, its strange how we take a good nights sleep for granted (until we don't have one).

After a lie in we decided to go out for a walk, it was very foggy in Warrington but as we drove to West Kirby the fog lifted. Averil and Jess went for a good walk along the West Kirby Causeway, I had a shorter but enjoyable one.

We are off for a meal now to Fran and Rach, any excuse, they are away over New Year so its good to be with them before they travel.

11) Sunday

What a lovely few days we have had, the joy of christmas and a realisation of how lucky we all are. If we didn't stop for a while we just wouldn't see it.

We were going to go for a walk this afternon but the weather just wasn't up to it, (and neither was I).

10) Boxing Day

After a better nights sleep we had a lovely boxing day brunch at Ann and Mick's.
The rest of the day has been spent doing nothing, "Perfect"
My chest infection seems to to be clearing very slowly, lets hope so because it is so sleep breaking, unfortunately antibiotics don't mix well with the new drug valcade.
2 more days at home before next hospital visit.

9) Christmas Day

Merry Christmas everyone.

We have had a good day, good church, good food and great family and friends, with us or not, all great.

It's 9.00pm and that's me for the night if I am to see the rest of the weekend I think it's bedtime.

8) Christmas Eve

Have been in hospital for 7 successful hours, have had everything I needed to see me through until Tuesday.

Have had blood tests, platelets, pendametine antibiotics via an oxygen nebulizer, saline and valcane anti cancer drugs, that's all for today I think.

I sometimes wonder why I feel so tired (apart from bad chest and sleepless hours coughing) when all I have done is sit in the passenger seat to hospital and back ( I don't mind who drives, I just know someone good will) and then at hospital I sit around waiting for things to happen. What I don't seem to take into account is the effect of the drugs and fluids that are being pumped in doing me good.

Let Christmas begin.

7) shops

Had a fairly good nights sleep just waking a few times with coughing but generally ok.

We went for the final food shopping at 8.30 so now that's all done the rest of the day is rest for me.

Hospital tomorrow again for 9 and then again Tuesday, how would I cope without friends and family running me round everywhere? Thankfully that isn't a worry because you are all there in your own special ways, it doesn't have to be a lift, it comes in all forms, an email, a joke, a phone call, a how's things or even just a smile, it's all special, thank you.

6) Day of rest

Taking it easy today to try to get rid of this chest infection, I am sure the antibiotic nebulizer will help on Thursday.

We are hoping to got to church tonight, we are having an evening called A taste of Christmas, should be fun.

5) More Tests

Back to Liverpool again today for more blood tests, Platelets a little low but the rest ok.

I was due to have Bortezomib (velcade) after the blood tests but it wasn't ready until this afternoon so I had extra fluids and Velcade about 12.30 finishing about 2.45, A long day but another one sorted.

I have a chest infection at the moment but my antibiotics finish tomorrow, they have decided to give me a nebulizer on my next visit instead of more antibiotics.

Thursdays visit will probably be blood tests, nebulizer, platelets, saline drip and the velcade, oh happy days.

4) Thoughts on the last few days

Myeloma is like a ticking time bomb (thats how it feels to me) we just didn't expect it to tick so fast.

I went to hospital on Tuesday for a pre-arranged blood test, Ann took me and all was well until the results, Jamie my Macmillian nurse (support and friend) was shocked to see the way the blood had changed after good results in October.

After the few minutes of stunned silence he went away and made a plan. WITHIN 2 HOURS he had finance confirmed with the Prof, Doctors checking possible next steps and the plan was made by 4 o'clock.

Since Tuesday I have had results, a platelet transfusion, a plasma exchange on 2 separate days (Wed/Thu) and started the Velcade therapy (Friday)

It wasn't the news we wanted but it has happened and we will get on with it, where else in the world could I have such great treatment? God Bless the NHS.

I can't thank Jamie, the hospital, friends and family enough for your care, prayers, thoughts, good wishes and just for being there. I thank God for technology, without it there wouldn't have been prayers being offered from all around the world within hours of diagnosis. Don't ask "Why Me", Just be thankful for what and who you have.

Don't wait for something bad to happen before you start enjoying life.

Thank God and God Bless you all.

3) Start the Bortezomib (Velcade)

After lots of water and a saline drip it was time for the Velcade (new drug). The fluids and preparation took about two and a half hours, the Velcade took 30 seconds from a syringe.
I have to have blood tests and the treatment above next Mon, Thur and the following Tue to see the New year in (and many more after that).
Now it's time to watch out for the side effects.

2) More Plasma

I have been to The Royal Liverpool Hospital again today and had another plasma exchange, the main therapy starts tomorrow and is called Bortezomib (velcade), it breaks down the proteins that the cell doesn't need it then blocks the proteasomes so that the proteins build up in the cell and die (rather them than me). Thats the theory lets hope it works.
I don't understand how it all works but I don't understand how mobiles phone works either, I'm just glad they do.

If you want to read any more about Bortezomib(Velcade) Click the blue.

1) Here we go again

I have had a plasma exchange (blood filtering) today, this takes away some plasma cells, I am having another one tomorrow, it takes about 2.5 hours but does thin the blood and gets rid of bad plasma cells.
I start an intensive treatment on Friday called Bortezomib (Velcade), its job is to break down proteins that the cells don't need.

Thats all for now but please leave comments or just read and email me, your support helps so much.

I will update tomorrow and after that whenever there is anything to tell you.