(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.