Platelets, Infection and Match

Three things I want to talk about today.

Monday was my day one of Cycle 6 which should be my final cycle before having my next stem cell, more about that later though. I had my blood taken for  full count to make sure I was ok to start the Doxorubicin and Velcade, but when the results came back, my platelets were showing over 232, so I had to have another test done as this is the highest they have ever been and there may have been a mix up in the blood. However the really good news is that there wasn’t a mix up and my platelets have increased by that amount which means that something is working the way it is supposed to for a change. So with everything going OK I was attached to my pump for the next four days and given my Velcade and issues with my 40mg of Dexamethasone (Dex) a day for the next four days.

The Dex stops me from having a good nights sleep, if any at all, but makes me feel a lot better during the day and as if I have a lot more energy than I really do. I try to do more when I’m on the Dex but still get exhausted afterwards, even if my brain thinks I can do more.

I was back at the hospital today (day 4) to have my next dose of Velcade if the blood results came back ok. They were a bit short staffed to get someone to sign off on the results to give me the go ahead and although the blood test is very quick everyone on the ward who was having Velcade has a long wait. Someone did eventually come over to me and as I think I have mentioned before when they come over and close the Magic Curtains (the curtains that they close around you when they want to tell you some bad news, as if nobody else can hear through the curtains!) Arianna informed that she wanted to exam my chest as the results have come back showing a possible infection and I am dehydrated. She listened to my chest and after me telling her about an infection in my thumb last week, she said that could possible be it, but she wanted to check with Dr Lee and would be back shortly. 10 mins later they both came back and closed the curtains again (oh no!) but after a bit of a chat, they realised that this was not day one but day four of my cycle…. once the confusion had been cleared up the results that they had been seeing was to be expected because of where I was in the cycle and I had nothing to worry about phew!! In fact that brought him on to my point three.

He told me that the they have got the results back for Nigel’s stem cell match and it was a PERFECT MATCH so some really great news. he wanted to know if he was the oldest or youngest brother and after after I told him he was the oldest he said they would prefer the youngest, but they hadn’t got those results back yet, but either way at least I have a match.

So although a little worrying throughout the day it turned out to be a really good news day.

My para-protein is at 11 which is about what it was last time before the stem cell (plateau), but Dr Lee said there was really any evidence to show that having a zero or low lower level would make any difference anyway, which I knew really anyway from others blogs that I follow that are in the same predicament as me.

I got an appointment through for Liverpool to go tomorrow, but I cancelled that one until next Friday which means I would have just finished this cycle. I may have to have another one as an interim while I’m waiting for the Transplant but I will wait to see what they say at Liverpool next week.

Bloods

Wednesday’s blood counts were good, even though I have been feeling very tired over the last week.

HB 9.3 which isn’t fantastic but above the level needing a transfusion, they will check again on Monday to see if I need any, but hopefully they have climbed a bit more, so I wont need one.

Platelets are 90 which I was a bit surprised about as my nose has still be bleeding a bit, so I was prepared to have more platelets. I think the fact my nose is still bleeding is because it hasn’t healed properly from last week. (note to self, I must stop picking my nose!)

Nuets 2.3 McDonalds here I come. No special diet at the moment.

Monday will be the start of my 6th Cycle and possibly my last one. I may go onto having seven, I will have to speak to Dr Lee to see how my bloods are doing and if he thinks I need a 7th, watch this space….

Some Really good news

One of the things I have never blogged about in the past is Charito’s (my wife) immigration status.

Charito’s home country is Peru and as some of you may be aware the process of moving over here to the UK and obtaining the relevant visas is a complicated one. First you have to get a matrimonial visa that covers the first 6 months then you get a temporary leave to remain, which in our case ended up being a complicated issue and initial they refused the visa, for reasons I wont go into here in detail, but it was a mistake by the border agency. I had to appeal against there decision but couldn’t get a solicitor/lawyer to represent me in the case as I kept getting told that I wouldn’t win and she would have to go back to Peru – I didn’t except this and decided to represent the case myself under the European Rights Act. I’m glad to say that the Judge could the sense in our case and ruled that the Border Agency should reverse it’s decision as they were in the wrong and recommended that the leave should be extended.

So that has been the situation for a about 5 years, waiting from one Visa to another and applying for each one as and when required, all of which cost a considerable amount to apply for.

The last stage in the Visa process is a permanent leave to remain, which means she can stay here for as long as we want to and return to Peru and the UK at any time.

Although I could see no reason why they should say no, it is very worrying to have the thought hanging over us that I could be in the situation where my wife is deported back to Peru when I need her the most. With me not being well, there would be no way I would be able to represent the case again at court.

With this application, it isn’t just a matter of having to fill in a form and sending it off with your fee. Charito has not only had to pass recognised qualifications in English; which she has done to a higher level than they required, but also to pass the ‘Life in the UK test’

Now I challenge anyone that is British from birth and has lived here all of there life to take this test and see if they pass. I know I wouldn’t! The test covers all aspect of life in the UK and the asks questions like ‘who appoints life peers in the house of lords? Although I know the answer now, I certainly wouldn’t if I hadn’t been helping Charito. Charito didn’t pass the first which I can understand as it is so difficult, that and it turned out that one of the books that was recommended, doesn’t cover all of the questions. After trying again, she did pass and that was another big hurdle for us. Remember this is at the same time that she is working at three jobs and caring for me when I needed her as I was in and out of hospital with my Chemo and side effects. All added burden to the both of us and a very stressful time.

We got all of the documentation together, which as you can imagine is quite a lot to cover all of the criteria that they ask for…. bills in both names, letters, marriage certificate, wage slips etc etc all of which is need to prove that she really is my wife and that we are living together. We sent it off over a month ago and have been waiting for the notification to arrive in the post. Every day checking the post to see if there was any news. Charito would ring me up from work each day asking if I had hear anything.

Well finally yesterday I got a knock on the door from Nigel our postman asking me to sign for a document for a name that he couldn’t pronounce. It was in Charito’s maiden name – Maria Del Rosario Egocheaga Casas. I knew exactly where it was from and couldn’t wait to open it, although it was with some anticipation.

I read through the letter on top, which was written in the usual cryptic way that these people write things.

I am returning the enclosed passport with an extension of stay in the United Kingdom

Now as I read this, I wasn’t sure what that meant! have they given the permanent residency or another extension visa for some reason. After having read through all of the documents though and dug out the Visa, it is in fact a Residence Permit, which means she has been given permission to stay permanently.

So we are both really pleased and at least one thing less to worry about.

There is one minor problem though that we have to deal with and this again seems a bit stupid!

One of the letters says:

As your passport is not available we have endorsed your leave to remain on an Immigration Status Document (ISD). You should make arrangements to obtain a new passport from your Embassy.

Now what seems so stupid, is the the fact that the passport that they say was not available, was included in the documents that they sent back and was included with the letter saying it wasn’t!!! How intelligent it that?

So my next job is to find out why. They go on to say that once we have the passport they can transfer the ISD into the passport for a fee (now there is a surprise) 

I will let you know how I get on. Overall though we are very happy.

VLog Number One

 

This is my first attempt at a  VLog let me know what you think!

Cure talk – trialx.com/curetalk

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Latest flower pic

black and white flower #2, originally uploaded by Sean Tiernan.

I had a bit of energy today, so I thought I would try and spend some time with my camera. I'm shattered now though and going to get something to eat. Probably have a sleep later on as well as I'm still not managing to get a good nights sleep; I wake up every 2 to 3 hours.

My shingle pain does seem to be reducing though as I can go longer without taking the pain killers. So I'm hoping that over the next few weeks it will get even less.

My Life with Myeloma http://mylifewithmyeloma.blogspot.com Sean Tiernan

Early Platelets

Well I didn’t have to wait as long as I thought before my platelets arrived. They were supposed to be arriving at about 3pm but they were ready for 1:00pm. So after having some saline and then my Velcade (which takes all of about 1min to administer) the platelets were put up and I was out of the hospital by 2pm.

I picked Charito up from work, just up the road from the hospital and nipped into Chester for an hour. Of course I had to visit Starbucks while I was there! It’s been ages since I’ve been to town, especially on such a nice day. I had my usual Grande Drip, but couldn’t drink it all, besides it was too nice to stay inside, so we did a couple of errands and then walked back to the car. I didn’t want to stay out too long, especially in the sun, I would only end up getting burnt and in be in even more pain, which I definitely don’t need.

Platelets needed

My blood results have come back and my Platelets are low at 22. Im still going ahead with the velcade but need some Platelets, which means Im going to be on the ward until about 3pm.

So I will probably go for a walk down to the cafe after lunch and charity will probably meet me there later on.

I thought I would need some Platelets today as my nose has been bleeding over the last few days which is normally my indicator that i need Platelets.

Velcade day

Im at the hospital again today, having my velcade. I've just had my central line flushed and cleaned and feeling quite bright and good in general.

One of the trainee nurses, Jackie, told me off for not writing more on my blog. So this should keep her happy. Unfortunately it is her last week on the ward before going back to university. I think she will do really well and has the right attitude for working with cancer patients and i wish her luck for the future.

I've told Jackie she can email me any questions; she has been using me as a case study for part of her course work. Im hoping she will send me a copy once she has completed it, hint hint!

Yesterdays’ blog post

Yesterday I said I would try and blog once I got home, rather than using my phone in the hospital to write with. However nobody would have seen that post (until just now) as I posted it to the wrong blog by mistake!

Anyway here is an update:

I’ve nearly finished my fifth cycle of the PAD I have one more velcade next Tuesday. As far as I am aware I’m only having 6 Cycles, so one more to go.

The last month I’ve been totally exhausted and it has really taken it out of me. I’ve been sick quite a bit and and had constipation and diarrhea (not at the same time, but nearly). I’m also not sleeping at night, partly due to the shingle pain keeping me awake (yes I still have the pain) and partly due to my feet hurting/aching; caused by the Velcade and Doxorubicin.

Most days I’ve been getting a couple hours during the day when after taking some pain killers it gives me a few hours relief where I’ve been trying to sleep, not always successfully.

I’ve now had my blood taken to be sent off to Liverpool to see if there is a  match with Nigel’s (my eldest brother). Nick my youngest brother hasn’t had his done yet as he has been working away and hasn’t been able to get to the hospital yet.

Other things that have changed since last blogging is that James has now moved out and gone back to Shrewsbury to live with his Mum again. I wont go into details, but it wasn’t working out for him up here with me!

On a really good note, I have wonderful neighbours. Chris and Jodie have worked really hard over the bank holiday period and throughout the week to build the decking in my garden as well as put up a shed and laid flags and stones in the front garden. I will post some pictures when I can. It looks really good and I can’t wait for some good weather to sit out in the sun, if we have any more!

Dr Lee has written to Liverpool asking them to take over for the transplant, so I’m waiting to hear from them soon I hope. Although I’m not really looking forward to having to go to Liverpool for my appointments. Apart from it being a lot further away, the environment isn’t as relaxed as it is in Chester and it is more clinical with lots more people being shunted through. My health at the moment feels about the same as I did when I got out of my first transplant, so I don’t feel as strong and as confident as I did the first time. I don’t think knowing exactly what I have to go through helps much either, as I’m probably getting even more stressed because of it.

I’m hoping there will be a break from the end of the cycle to when I go in for the transplant, to give my body a bit of time to recover; although I don’t want to wait too long, just in case my paraprotein starts to creep up again.

Time will tell.

Blogging

Im going to try and catch up on Blogging as once again i feel as though Im neglecting it.

Im in hospital on the day ward at the moment waiting for blood results before they give me my velcade. Just finished cycle 5.

Will write more later when at home at the computer, rather than using my phone.