Funeral Details

Hi everyone it’s Nigel again with some updates, sorry for the delay but was awaiting the coroners decision before we could get going with the arrangements. They confirmed it was pneumonia that got him in the end.  So that is why it was so sudden.

The funeral (why is there fun in that word?) will be on the 11th June at 15:00, held at the Blacon Crematorium, Blacon Avenue, Chester, CH1 5BB.  this was the first available date due to the double bank holiday!

The ceremony will be fairly informal and we would like people to wear more brighter colours  than the normal black, but if you want to wear that little black number that is fine as well   we want to celebrate Sean’s life more than the end, and in keeping with his sense of humour as he didn’t want everyone to be dull and unhappy. As he said always look on the bright side of life!

There will be buffet afterword's at the Frog this is opposite  the Countess of Chester Hospital. (well a little bit further past it).  Everyone who want to attend may do so to both the ceremony and the food, there may even be enough fish finger sandwich's for every one, as long as you get there before us Tiernan’s as we can really pack this stuff in.

We would prefer donations to the Myeloma UK Charity than flowers, as Sean didn’t like flowers much, plus they don’t do too well at a cremation?  If you do wish to send flower for the hearse you need to get them to the Co-operative, Funeralcare, 12 Lower Bridge Street, Chester, Cheshire, CH1 1RS.  by 1pm on the day of the funeral.

That’s it for now I will send out more updates as we go on.

Some Very Sad News

Hi Everyone this is Sean’s brother Nigel writing this blog entry.

This is to inform all of Sean’s friends and blog readers, that Sean pass away suddenly in the early hours of this morning 29th May @ 01:40.

On Sunday evening he had a bit of a high temperature, this carried on in to Monday, by the evening he felt very unwell and his daughter Amy, took him and Charito to the hospital.  when he arrived he was too unwell to walk and they took him in on a wheel chair.  the hospital gave him oxygen and took him to X-Ray, then put him in a bed at A&E, but shortly after that he collapsed the hospital staff managed to bring back round, but he wasn’t fully aware of his surroundings, half an hour later he passed away with no pain.  At the moment we don’t know what actually happened to him and may never know, we are awaiting the coroners decision as if they want a most mortem or not?

Sean was always a positive person with a twisted sense of humour thrown in for good measure.  he kept smiling and made me laugh with some of his blog entry's,  we were both sure he would last a long time even with the dire situations he kept finding himself in.  With hind sight Sean was probably a lot sicker than he thought, and just wanted to stay at home with his wife Charito, than go to hospital with a little bit of a high temperature.  he has managed this in the past, as you will have read on some of his earlier blogs.

We would like to thank all the well wishers and friends he made over the years, and to all those who have this terrible disease to keep fighting, as Sean said in his last blog, everyone is different and some people make it.  Stuff does work for a lucky few, so keep smiling and keep the faith, just hang in there.

A special mention some of the friends that Sean made with Myeloma, Paula, Adam and Antony.

 

I Will update with any more information later

I will miss Sean very much.  Nigel

Last word from Sean, So long and thanks for the fish!

Neglected Blog

I seemed to have done it again, sometimes I can write on my blog and have plenty of things to say and other days/weeks I forget or feel that there isn’t more worth while mentioning.

So far things are going ok and the last few days have been really good. It was Charito’s birthday on Saturday and we spend the day visiting garden centres and doing a bit of shopping for a few handbag. For some reason every woman needs a new handbag to match something else they haven’t bought yet, like a blouse or a pair of shoes that they will need to buy to match the handbag. So forever the circle goes!

The sun has been shining and made such a difference to the way I feel. I’ve also gone back to using my bright yellow Toyota Celica. Although the Citroen Xsara Picasso is a good car, for some reason I felt as though I was a disabled person on my last legs. (which may or may not be true). Driving around in the Celica makes me feel a lot better especially in the sun, although it is harder to get in and out of.

I’m not the type of person to give up and not to be positive, but I felt that the Picasso was doing that to me. When ever I parked up in a disable location and looked around at the other people, they were all driving similar vehicles, which just isn’t me.

I may get strange looks using the Celica as a disabled car, but at it makes me feel a bit better. Maybe I am different, always staying positive when I can. I obviously have my down days as we all do, but if it helps keep me going, then why not have a bit of fun.

I have a feeling that my platelets might be a bit low this week, I will have to wait to find out on Friday. I’ve had a few little cuts on my hand and they are taking a while to heal.

Nigel is coming over to stay for a couple of days (or at least one) so we are planning to try and get some photographs done, especially while the weather is good.

He hasn’t had any information regarding his DLI yet, but I think that will be done in the next few weeks as they aren’t going to be hanging around with it.

I always feel a bit guilty when I write about myself and what I am going through, compared to other blogs that I read, I have it relatively easy! (at the moment anyway). I know I whinge about my treatment not working and my paraprotein climbing all of the time, but at least I don’t have the liver and kidney problems that others have. I do have bone pain and nerve damage to my feet and hands, but I’d rather have that, than go through some of the treatment that my blog friends are going through!

From one myeloma patient to another, it is difficult to give encouragement as I’m sure we have all found, everyone is different. We all get treated differently the drugs work differently and our outcomes are different. So what do we do or say to stay positive. Well basically what everyone else is thinking, hang on in there and do what needs to be done, we don’t have much choice really.

Meeting up with others with the same or similar cancer can be encouraging, knowing what they have gone through, but it shouldn’t be taken as that’s how it is going to be for you.

When I speak to newly diagnosed patients, I try to avoid telling them that I have had several lots of treatment, all of which have have failed and two transplants that didn’t work. For them it may work first time and give them several year, we are all different, instead I try to stay positive for them and tell them how I got through the treatment without too much pain etc and hopefully encourage them to continue with their own treatment, without too much worry.

I personally get to have the same type of encouragement from others that have gone through similar treatments and been told they haven’t got much longer to live, only to prove them wrong by living several years more than expected and are still going. I’m going to be one of those.

So driving around in my yellow car makes me feel better, especially in the sun and if it helps towards getting some extra time on the earth with Charito, I don’t care what other people think.

Maybe I should dye my hair pink! to see if that helps as well!!!

Watch this space.

Why does nothing go right for me?

I was at the Hospital on Liverpool on Friday where I got the results of my latest paraprotein levels. Guess what! They have gone up again. They were 13 now they are 23. They will probably continue to rise.

There are a couple of things that we are going to do, we being the doctors and me. The first is to increase the steroids that I am on with the Lenalidomide, I’m not back on the three day pulse of 40mg, which is 20 tablets for three days at a time. They are hoping that this will stabilise the paraprotein as the combination of steroids and Lenalidomide is the way that they manage it’s effectiveness. I’m already on the full strength of Lenalidomide, so they have changed the Dexamethasone to see if that works.

The other things that we are going to do is a mini transplant or Donor Lymphocyte Infusion (DLI). A DLI involves extracting the white cells from my Donor (My brother Nigel in my case) and infusing them into me. Nigel will have to go on the same machine he did last time that extracted his bone marrow, but he wont need to have the injection he had last time as it will just be extracting the white cells.

Once the cell have been extracted they are infused into me, the same way as  a blood transfusion or injected into me through my Hickman line. There is no stay in hospital as it will all be done on the the same day and there isn’t a need to stay in.

The plan is to do the DLI as soon as possible, for obvious reasons.

The increase in Dexamethasone will make me immunocompromised, more than I am now, and the DLI will also do the same.

There are risks with the DLI as there are with everything else. There is a 5% chance of death, which again compared with my chances if I don’t do is nothing to worry about. In very rare circumstances it can destroy the bone marrow all together (which again would lead to death). I will need to keep an eye on graft versus host disease (GVHD), I’ve not had a real problem with that so far, only with the dry skin that I use the double base for every day.

Hopefully this will work for a bit longer, at least longer than a few weeks, which seems to be the norm for me as everything I have tried has failed after a few weeks.

Going back to some other issues, the CMV doesn’t seem to be a problem as that has checked out OK from the slight anomaly I had a few weeks ago with both myself and Nigel being CMV negative, one of the results came back showing a slight CMV+. We don’t know why, but it isn’t showing now.

I’m still waiting on the Chimerism results to see if my DNA is the same as Nigels (i.e. the transplant has taken successfully)  I’ve had a partial result back last time, which was 90%, so I expect that to be 100% this time. Although the transplant was/is successful, the effect on the myeloma wasn’t, hence the reason I’m on the Lenalidomide already, before the transplant process has completed. If I hadn’t started on the tablets, I would already be in a worse situation than I am now.

My blood results were OK on Friday as well.

HB 9.7
PL 65
WH 3.6
Neuts 1.3

My Neutrophils are a bit low, but I expect them to climb back up again, I will find out on Wednesday.

I’ve also been in a quite a bit of pain with my back this week, although it has eased off a bit today, but I’m still not sleeping properly. I’m taking the sleeping tablets, but with the back pain and cramps that I have been having in my feet and legs, I’m not getting a chance to have a proper sleep. I doubt very much I will get any over the next few days with the amount of steroids I’m taking now. I will just have to see how it goes and if I can, catch up on some sleep during the day.

Photo shoot

Nigel my brother has been staying with me for few days. Its been great top spend time with him. We were going to go to tatton park to takeome photos but the weather wasn't good, in fact it was pouring down, so we decided to go further north into Liverpool where the rain wasn't expected until later on in the afternoon.  While I was in Liverpool I popped into the hospital to get a chimiron test done. This is the test that tells them if my dna is the same as nigels! We can't do this test on a Friday, which is my usual appointment because it takes a few days to complete.

After the hospital we went into town to take some photos of Liverpool architecture.  I have a few photos that I will post once I am home and have downloaded them from the camera.

By the end of the day though I was totally exhausted and no wonder if my bloods were low.
Feeling much better now though and looking forward to seeing my brother again soon and arranging to take some more photos hopefully the weather will be good so we can get to tatton park.

Having blood.

I've had my appointment at Chester yesterday. I have the start another chest infection and the doctor has prescribed some antibiotics to see if that will get rid of it. Although he did say it might not work and we may have to try something else, we will just have to see howit goes.

My bloods are also low so I'm hospital now having two units of blood.

I've also had a really good few days with my brother but I will write another post about that.