Feeling better

I’m feeling much better than I was. I had to cancel a photo shoot on Sunday as my nose didn’t stop bleeding, not too much, but enough to stop me doing much. I was hoping to see Steven my son in Blackpool and do a shoot with a model there at the same time. I hate letting people down, but I felt it was necessary this time.

During Sunday it stopped and I felt much better later on, so on the Saturday I decided to take a risk and go to a group shoot that I had arranged to attend in Liverpool.

For some reason my photography always makes me feel better…..

and so life goes on

I’ve taken it all in what happened yesterday and coming to terms with it. The first thing I have to do is see how the Veclade works. I should know in about 6 weeks (to some extent) which will give the first cycle results.

I’m going to be optimistic going on the Velcade, not because I’m a positive person, but because I have no other logical option. I’m not going to be one of these people that just curl up and give up.

Hopefully the antibiotics will clear up the infection I have at the moment and I will feel a lot better and it will give a chance for my blood to recover faster.

I didn’t mention yesterday how painful the bone marrow biopsy was. The first time I had it was back on 5 Nove 2009 when I first found out I had cancer, when they did that one it was really painful and they couldn’t extract any marrow but had to roll the bone on slide to get and extract. I was hoping that after all the treatment I had that the marrow would be easier to extract. Guess what it wasn’t as painful that the first one, it was worse, at least from what I remember. I had a nurse and assistant with me and the assistant offered to hold my hand during the process. I refused the offer and told her about last time that I nearly ripped the pillows apart with the pain, afterwards she was glad she didn’t.

I seem to have an intolerance to the local anaesthetic she gave me as much as she could and when she tested hitting the bone with anaesthetic needle it was a dull pain, rather than sharp, but as soon as she put the other one in with bone corer (similar to an apple corer but not as bit) it was very painful and I could feel every bit. In the end, the only way she could get it done was if I tried breathing over the pain (women will know what I mean, well those who have given birth anyway – oh and fathers). Well that’s what I had to do as I couldn’t have any more anaesthetic. It was very painful and I screamed in pain a few times, but finally got it done. There was a man opposite to me that had the same thing done for the first time. He started his before me and I gave it some thought as to mention it would be painful, but thought I would leave him to find out for himself. Afterwards I asked him how his was, ‘I didn’t feel a thing’ he said. I guess it is just me being one of those lucky guys who nothing works for!

My Myeloma update

If you have been following my last few posts, you will know that I haven’t been well with a cough/cold and last night my nose bleeding.

Well today I went to the hospital to have my bone marrow biopsy and full skeletal X-Rays. I’m not going to make any jokes in this post, just the truth.

I don’t feel up to writing all the ins and outs of how painful etc it was, but Dr Lee came to speak to me after I had further blood tests and told me that my Myeloma had relapse completely but not only relapsed but it has advanced dramatically. My blood count had decreased and my platelets have decreased to 32. I’m going to start on the Velcade probably next Wednesday. I asked if this will reduce my life expectancy and after a pause he said yes it would as we are now much further along on the expected treatment that we thought we were.

I can have Velcade and something else that I can’t remember the name of, but that would make me quite ill for the next 5 or 6 months, so have decided to go the Velcade with some steroids which I may be able to continue work with. I’m going to start off on the mix that I can work with and see if that works for me if it doesn’t then I will try the other one. I could go for a second transplant but they don’t know if that would work for me but they could try, frankly I would rather do something that has a bit more of a success rate than ‘it might or try’. It would also mean a long time again getting ready and a long time to recover that again may not work.

Overall today has not been a good day for me. Again they wanted me to stay in hospital while they gave me some antibiotics and monitored me, but after the x-rays came back and my temperature was stable he allowed me to go home with the antibiotics.

Tomorrow after some sleep and rest I may feel a bit better and try to get my positive side back, but at the moment I’m feeling down.

I get knocked down

Tubthumping – I get knocked down: I first bought this song when it came out a good few years ago on tape, I now own it on various different CD compilations, however more recently it has become more meaningful. Not just because I sing it on the Xbox with my next door neighbour but because it reminds me that things could be worse no matter how bad things get and to stop  winging and get up off my arse and do something. I don’t think that (Jodie, next door) will ever be able to listen to the song again without thinking of me (not sure if that is because me and Chris sing it so badly though). Listen out for (or watch) for the mention of my next door neighbour.

Dedicated to Chris & Jodie for always being there to cheer me up when I’m down, normally lots of wine and singing is involved. but when I’m not on the wine (while having treatment), their company more than makes up for it. Thanks Guys x.

P.S. I only drink wine, not a whisky drink or a lager drink or a cider drink or a vodka drink!

P.P.S Jodie! stop crying

Sometimes I think I can see into the future

If you recall yesterday I mentioned briefly about my platelets being low, last time that I know of they were 55,000 and I mentioned that at 22,000 a person could be at risk of spontaneous bleeding.

Well I don’t exactly have spontaneous bleeding, but early evening my nose starting to bleed, I think because of all of the blowing and coughing. It hasn’t been much, but a slow drip, you know the type you get when your walking around town on a cold day and you have that annoying dripping cold, well similar to that. The only problem is, it won’t stop.

WARNING: If you are bit squeamish about talking/reading about blood or yucky stuff, turn away now

When I was younger and had nose bleed for what ever reason, we were told to pinch the top of your nose and lean your head back (method A). Then as I got older they tell you that doing that is bad and you should leave it to run and congeal/clot on it’s own (method B). Well I didn’t try the pinching and putting my head back, I think I would have chocked on all of the yucky stuff mixed in, either that or have been sick. I did try something similar though and just before going to bed I packed cotton wool into my nose to see if I could get away with that until morning. That didn’t work though as all I ended up doing is not being able to breath if my mouth closed, although I could have coped with that, after all it would only be like having a blocked nose. No, the main reason it didn’t work is that all it did was drip backwards into my throat and made me cough blood. So I couldn’t get to sleep with that method. I came downstairs and pulled the cotton wool out and along with it came a semi congealed blood clot (sorry! I know that must sound horrible). I blew my nose as well and lots more came out but I could breath and it felt really good.

I can’t lie down properly as I start coughing and my nose starts dripping more (with blood) so I decided the best option was to try and sleep in the chair and just let my nose drip to see if it clots and stops (using method B above).  Again all that happened is that it clotted slightly but the blood still dripped past and when I dabbed it with the tissue it just made it worse and any slight movement or blowing made the blood that had slightly clotted come out again.

At this time, around about 5:30 or 6am can’t quite remember but I know I was very very tired. I decided to blow my nose again so I could breath and lie on the sofa propping my head up. If I managed to fall asleep, great! If my nose bled on the sofa, who cares I was too tired!

I did manage to get to sleep for a couple of hours before Charito came down and said she was late for work.

I’ve had something to eat and drink and now trying again to sit as still as possible without it dripping. I’m at the hospital later for my bone marrow biopsy and full skeletal scan again, so I will talk to the doctor while I’m there and see what they can do. I will write a update later, providing they don’t decide to keep me in.

My cough got worse

It was bound to happen, my cough didn’t get any better on the Sunday, if fact it got worse. The Crackles that the doctor heard were, by Sunday evening, very much loud rumblings in my Chest. My nose was streaming and just couldn’t stop coughing. I was coughing up yucky stuff, which is a good sign, at least it was moving. Monday was no better and as the Doctor suggested I was monitoring my temperature. It started to go …..37…37.4….37.7…. I only start to worry when it goes over 38 …….next one 38.7. Oh …. time to start worrying, I’ve got used to this though and fully aware that the first thing I need to do is cool myself down. So windows open fan on minimum clothing ext. As usual though with a high temperature I feel as though I am freezing and always seems the wrong thing to do is to make you even colder, but that’s what we have to do!

By doing the above I managed to keep it below 38. Taking the paracetimol which helps reduce the temperature. It’s at this point that I have to consider, do I go back into hospital or wait to see if it gets better or worse! Having gone through the experience of how they cool you down, I was doing the exact same thing at home, although this time my chest was rattling, I decided I would try and hold off. I’ve gone through goodness knows how many boxes of tissues and a roll of toilet roll, with the spitting and nose blowing. Charito is going to buy some more today for me as I have nearly finished another box, about six or seven I think. My nose is sore and bleeding and I’m trying to put some E45 around my nostrils to keep them moisturised, but it stings like hell on the cracked skin.

I kept an eye on my temperature throughout the night. I’ve just taken it again and for the first time for a while it has gone just below 37, so I’m hoping it will stay that way. I’m not coughing as much this morning, so hopefully on the road to recovery.

I’m still taking the cough medicine and using the vicks vapour rum, not that I can smell it. I managed to get a bit of sleep last night as well, which I think has helped me feel a bit better.

I have my bone marrow biopsy and full skeletal scan tomorrow, so I will get the doctor have a look at my chest, just to make sure everything it ok-ish.

One other thing I found out while at the hospital the other day, is that my platelet count is now 55, which I think means 55,000 per microlitre. In an adult, a normal count is about 150,000 to 450,000 platelets per microlitre of blood. It is considered a risk at 22,000 as spontaneous bleeding may occur. The only thing I don’t know or rather can’t remember is what my last blood count I had with Dr Lee showed.  So it may have gone up or down, I will have to wait and see.

As promised here are some of the photos

These are some of the photos I’ve taken over the last few weeks. Let me know your thoughts and if you fancy a go at modelling for me, just ask.

Charmaine

 

Terri

 

I’m ill and that’s my excuse

I got a surprise visit from Amy before, which was great to see her.

I thought I would give a quick post about a stupid thing I did, before Amy gets the chance to tell everyone (as if she would embarrass her dad).

I went over to my laptop to try and pull up a manual in pdf form for her Grandad (or should that be Granddad) that he wanted, but unfortunately there was a pop up advert on the screen  ‘ £10 Voucher for Sci-Mix Nutrition’. I tried closing it down, but I couldn’t see the X to click on after a second or three I realised that the pop up was very clear, in fact too clear. It looked just like a real piece of paper. Obviously because it was. While I was upstairs Charito had cleaned downstairs and found this advert, which came with an order from Amazon (you know the ones they slip in with every order). Well she didn’t know what to do with it so she put somewhere where I wouldn’t miss it, literally on my screen resting on the bottom left. Amy couldn’t stop laughing when I just took it off the screen. I blame the fact i’m ill and not because I’m totally stupid!

Cough – the breakdown

As in a the previous post, I mentioned that I went to see the emergency doctor at 2:40pm. I’d been suffering with the cough all day Friday and didn’t get any sleep Friday night the doctor I went to see was at Deeside Hospital (a relatively small hospital). He was a very nice Dr and examine me thoroughly and after discussing my case with him, he wasn’t happy to send me home with some antibiotics as he could detect a slight abnormality in one of my lungs. He decided the best option was to send me the Chester Hospital to have an X-ray done.

So off we went back in the direction we had just come from. I thought while we are passing I would pop in to the Chemist to pick up my Bonefos (repeat prescription) that should have been ready last Wednesday. So into the chemist I went, picked up another couple of boxes of tissues and paracetimol and asked for my prescription ……….yep you guessed it, it wasn’t there! After searching all over the place and looking on the computer they finally discovered that the request had been made to the doctors surgery but they never supplied it. I’m thinking about changing my doctor as I’ve never been happy with then since I moved here. So my bonefos ran out last night and not sure when I’m getting my prescription, the chemist will be calling me on Monday.

As we have to pass our house to get to Chester and knowing what the hospital is like, I thought it prudent to pick up some Pyjamas, just in case they keep me in.

We had to report to Accident and Emergency and after about a 10 minute wait were called by a nurse and told they were ready for me on the AMU (Acute Medical Unit) ward. She pointed us in the direction to go and when I go there I asked the question, ‘are they going to be keeping me in’ – They didn’t know and I would have to wait to see what the doctor said. This was about 3:50pm – time passed and I had a million stickers stuck on me for the heart monitor, ok not quite a million, but it as an awful lot when I came to peel them off. Oh just before going on the heart monitor I had the usual observation taken, pulse, blood pressure, temperature. It was at the point where the nurse looked and me and said … ‘Do you normally suffer with heart problems’ that my pulse probably went up. Errrr why do I now? It might be nothing to worry about but we will check it out. I’ve heard that might be term before, just before they said they would check me out for cancer! Then I heard words like Tachycardic being discussed between the doctors and nurses. I only came in with a cough and now I’m going to be told I have a heart problem I thought! I would expect if they took my heart measurements at this time it would have been even more tachycardic. I’m sure they do it on purpose sometimes, when they are bored… I can imagine them sitting in the corner somewhere saying, lets see how high we can get this guys heart rate to rise just by discussing it. Then taking bets on who would be nearest. Anyway back to all the stickers and cables they clip all over you. It only took a few minutes to see who the winner was, er I mean to see what my heart rate was. Phew my heart can stop beating so fast now, it was normal and nothing to worry about.

We did some more waiting again (for a change) they brought some lovely food around and offered me some. Now I know from experience in Chester hospital that the food isn’t brilliant; however Charito was hungry and as they only offer the patient something I said yes to the Quiche and Chips with a side portion of peas and sweet corn. I did at least try it before giving it to Charito and had it confirmed. The chips were cold and not cooked. I didn’t even attempt the Quiche. Charito on the other hand was really hungry and ate it anyway.

Finally got to see the doctor who went through all the same question I had previously answered to everyone one else I’d forgotten how many times I had said the same thing over and over again. At least this Dr was female and very pretty, which made up for it! After checking my chest and she said she would be back later with the Senior doctor. As promised, later on she arrived with the senior Dr. Not as pretty, but he was a very nice man. Same questions and same examination. They nipped out for a few minutes and came back and said they weren’t going to put me on Antibiotics as is could make it worse rather than better, They would give me some simple linctus for the cough and keep me in over night to monitor me as I have coarse crackles in my left lower zones of lung. He advised that I stop eating the cereal ‘Rice Crispies’ (snap, crackle and pop) and try Sugarpuffs! OK OK he didn’t really, but it would have been funny if he had.

I don’t want to stay in hospital I told him. I’d rather go home. I knew it would be very quiet and I’m going to be coughing all night, you cant get up without disturbing someone and the times you do fall asleep they come over and shine a light in your eyes to see if you are ok (i.e. not dead) which wakes you! He asked me when I have my next appointment at the hospital, which is this Wednesday (bone marrow biopsy and full skeletal scan) and agreed to let me go home, but just to monitor my temperature – something us cancer patients do regularly at the slightest hint of an illness, we’re well trained.

Oh missed a bit out, I had to go for Chest X-ray during this process and just as I came out and was being wheeled to back to my bed, Charito’s phone rang. It was Amy my daughter. She had been passing the hospital and saw my car in the carpark. Initially she though I was visiting her auntie as she lives next to the hospital. So she went to see if I was there, of course they hadn’t seen me. I think Amy must have started to get worried then. She tried calling my phone and texting me, but the battery had ran out. Fortunately Charito was working still and she was able to get through to her and she explained what had gone on. I spoke to her later on to reassure her that I was ok . I suppose I should try camouflaging my car so it isn’t so conspicuous. Chel (who is married to Amy’s auntie Vanessa) calls it a wedge of cheese on my facebook page, not there is an idea, all I need to do if find lots large wedges of cheese and park my car in between, now nobody would give that a second look and Amy wouldn’t spot it in the carp park and worry.

Last night I didn’t sleep very well again, but dosed off now and again when I could as I was so tired. I tried overdosing on the Linctus but that didn’t work. 5ml spoonful three times a day, more like a swig every couple of hours!

I’m going to try and get to the chemist later on to buy more tissues as I have gone through two boxes yesterday. I’m also going to buy some Vicks Vapour rub as suggested by 'Tims Wife’. So if anyone wants to come and rub it over my chest tonight, let me know… let me rephrase that, if any sexy young ladies want to come and rub the vicks over my chest tonight let me know. :) (how does Charito put up with me he he).

Right I’m going to see if I can catch some sleep before going out…. I don’t hold much of a hope!

A quick cough update.

Went to emergency doctor at one hospital, he was happy to send me home after listening to my chest and sent me to Chester Hospital for X-rays etc. They wanted to keep me in hospital but I persuaded to let me home. Finally got back home at about 9:30.

I will fill in the bits in between tomorrow, but for now I’m very tired after not sleeping and have a very bad headache.

Until tomorrow – cough, goodnight.

Cough Cough Cough!

This week has been my first week of full time work. Unfortunately I can’t right everything I want to write on here about work, but needless to say it isn’t a brilliant place to be at the moment, not just for me but for others in the team as well, but that another story.

In December last year I had a high temperature and a cough/cold and ended up going to the emergency doctor to check me out. He prescribed some penicillin and sent me on my way. The seem, at first, to have worked; but I was left with a niggling cough since then. Well yesterday at work it cam out full blown again, I filled a bin up with tissues from blowing my nose and I kept coughing all of the time.

Another member of staff shouted across from the other side of the room, ‘It sounds like you are dying in the corner and will be dead soon’; Lots of quips came through my head to retaliate, but I think they would only really make her feel bad, as I don’t think she knows I have myeloma, so I just ignored it. Besides I was too busy coughing.

The coughing got worse as the evening went  on I felt much worse, I was making myself sick with the amount of coughing I was doing. I’ve been drinking lots of herbal teas to put the fluids back in me and sucking on lozengers. I didn’t get much sleep last night as every time I lay down I just started coughing.

Todays plan was to go to the chemist to pick up my prescription of Bonefos then go shopping for a few things. All that had to change and I decided that I need to call the doctor as I’m not feeling at all well. Normally I would just leave it and see how it went, but I thought why should I struggle I’m not well!  I never went through the same routine as I did in December and just called the emergency doctors number. After the usual interrogation (name, dob, problem etc) they said someone would call me back, which they did in about half an hour.

I got the call back and went through lots more question and an appointment has been made for 2:40 today. (just ran out of tissues!). So I will let you know how I get on later.

I’m really disappointed that I’ve come down with this, I had a photo shoot with a family tomorrow that I have had to cancel. I hate letting people down. It can’t be helped though as I need to be well enough and not spread it to anyone else.

I will post some of the pictures I’ve taken over the last few weeks as well.

Now I need to go and find some more tissues…..

Family and Friends

Even though I have had it confirmed this week that my Stem Cell Transplant wasn’t a success and I have to try something else, I have had a surprisingly good week, thanks to my family and friends.

Tuesday: I met up with Mark who I used to work with and had a great time catching up in Starbucks for a few hours and lots of coffee that probably had us both hyper-active for the rest of the evening. We were even entertained by a couple that were more than amorous on the sofa behind me, but I have to take Marks word for that as I had my back to them. It was quite funny when Mark realised that he was staring into space only to notice a few seconds later that they were actually looking straight back at him…. Mark felt it necessary to explain to me that he wasn’t staring at them  … which made it look worse as I didn’t even know what was going on behind me. I’m sure as he reads this he will still feel guilty and confirm on a message that he wasn’t looking at them on purpose!!!!

Wednesday: Hospital confirmed SCT not worked, but you know that :D

Thursday: Amy my daughter called and asked if Vanessa could come around with her, which ended up being …

Amy, Kai, Brandon, Jason (the three grandchildren – yes I know I don’t look old enough :) ), Vanessa, (Ness), Chel (Nessa’s husband – Michelle .. French background), their son Viggo and their daughter, Yazmin, plus myself and Charito. So ten of us in all. Now imagine everyone eating cake, keeping in mind that four of them are little children (two of them too young to eat cake). Kai and Brandon made sure that they helped everyone else eat their cake. I’m sure after they left, once we brushed it all up (good job the floor is laminate) that we ended up with more cake than we started with. The word that comes to mind, having them all around is Fabulous. I really enjoyed seeing everyone and meeting Chel for the first time, who I think has a similar sense of humour as me, which is rare. Normally I meet people for the first time, and never see them again, as they don’t know how to take my sense of humour…. mind you I’ve yet to see him again. I’m sure I will though as they have asked me to take some photos of them. Oh I should explain that Ness used to be my sister in law from my first marriage. I still keep in touch with everyone (even the ex)  and love them all as my own family.

Friday: Chris and Jodie (next door neighbours) invited myself and Charito around for a civilised glass of wine….. OK those that know me and my neighbours, know that isn’t true. We had lots of wine and got very drunk and sang on the Xbox Karaoke game, very badly I must admit, but it sounded good to me and Chris after one or 10 drinks. I’m not on any medication at the moment apart from my bonefos so enjoying myself before starting on the Chemo again. I don’t drink any alcohol during treatment, not that it made any difference last time. Perhaps that’s where I’m going wrong, I should drink more wine!

I don’t feel too bad this morning after lots of water, but it might kick in later! I have a photo shoot with a model this afternoon and one tomorrow to keep me busy over the weekend. I had one last weekend as well that went well. I’m learning lots about photography and how to use lighting techniques. When I first started I though that it was going to be quite easy to take photos, but now, the more I learn, the more I know that I don’t know (does that make sense). I’ve always loved learning new skills (normally in the computer industry) and this is keeping me busy with lots to read and try out. I think learning photography as I go through my treatment is really good for me as I can do as much or as little as I want depending on how I feel.Even stuck in bed in a hospital doesn’t stop you learning and reading about new techniques. I’ve looked back as some of the photos I did in the very beginning and after learning so much have felt really ashamed at thinking that they look good enough to show people. Blurred shots, incorrect white balance, cropping incorrectly and the list goes on…. I don’t claim to be an expert now and I’m sure looking back at the shots I have taken recently in another six months I will feel the same, but I’m still enjoying it which is the main thing.

Work: lots of things have changed at work – I can’t write about them too much on here as I know that some of the people I work with read this (sorry guys!). Am I happy with the situation? … I have never been really been happy with the way things are, but needless to say as I’m never going to get over the Myeloma, I’m coping with it and have to remind myself that it is only a job and there are more important things in life (I feel rather odd writing that knowing that I’m dying (of cancer), but as Charito says, aren’t we all, dying that is!).

Family and friends mean so much to me, even though I don’t always show it. I try to hide my emotions away as often as I can.

…. You look really good, your so strong, your doing really well, stay positive, you have always been a positive person, I’m not sure how I would cope, your doing really well. These are just a few of the things people say to me (and no doubt others who have cancer as well). but behind closed doors when nobody is looking, during the time I’m alone with time to reflect I’m not always strong etc. Us cancer patients like to have a little cry now and again (we are still human), we think about our family and friends and enjoy every moment we are with them, knowing that they will never happen again. Time is important and I get frustrated knowing that people are doing nothing with their lives, sitting around and waiting. If only I could do it all over again … maybe I would do things sooner or be more active in my goals. It’s so easy to put things off until tomorrow. Live for today and do it now, you never know when they wont be there!

SLAP!!! – That was my metaphorical (ooooh big word) slap across my face for bringing everyone down, including me. Don’t worry I’m not depressed, just another rant (get used to it).

Love to everyone, Family, Friends and all those that read my blog, it never ceases to amaze me the amount of people that send me messages of encouragement and support.

I really should stop typing now, I think I have typing diarrhoea (a bit like verbal diarrhoea, but you can’t stop writing), it might have something to do with the amount of wine consumed last night!

Stop it! don’t write anymore… but the thoughts keep coming into my head!…. enough already!

OK – bye for now, hope to write more soon.

but, but I have finished …. no wait ……I ….

doh!

Free Parking Again

Well it looks like I'm going to be using my free car park pass at the hospital again. Only cancer patients who are undergoing treatment get the free passes! I had my appointment today to get the result of my last blood test to see if the para-protein levels have gone up or down. Unfortunately they have gone up again, which confirms that my bone marrow transplant in August wasn't a success. Also my platelet count is below normal. The three options I have are:

• Allogenic Stem Cell Transplant (another transplant but this time from sibling donor cells)
• Chemo therapy (Velcade) to reduce and keep the para-protein from multiplying
• Clinical Trials

After much discussion as the benefits and side effects of the Allogenic and the Velcade, we now have a plan of action. I also asked what would happen if I did nothing at all, which could be an option.

I have another appointment to have a bone marrow biopsy, for those that have followed blog so far will recall that I had one of these right at the start that was very painful as they couldn’t extract any bone marrow as it was so compact. I’m also having another full skeletal scan to see what affect the myeloma has had so far.

I’ve decided to go down the Velcade (chemo) route, which will be about 5 or 6 cycles lasting about 5 months overall, rather than putting my body through a transplant again so soon after the first.

However before starting on the Velcade they need to see the results of the next lot of test. If one or more of the following has happened then I will be starting on the Velcade.

• The skeletal scan shows an increase in the Lytic Lesions (holes in my bones)
• The bone marrow biopsy clearly show that the marrow is damaged
• My platelets have declined and not gone back to normal.
• Para-Protein has not made a significant increase

Which, with my luck seems unlikely that all of the above are going to be OK.

If by some miracle they are showing

• No increase since the skeletal scan
• Biopsy results are OK
• Platelets normalised
• para-protein levelled off

Then we may not anything but monitor the levels closely.

I could take a guess as to what is going to happen, yes you guessed it free parking and start on Velcade.

I will also be on Steroids as well, a good excuse to start eating lots of cakes.

Another good thing is that I will be drinking plenty of wine while I can before starting any new treatment. So if my speech is slurred I will blame it on the treatment, even though I wouldn’t have started it yet, but sssshhhhh don’t tell anyone and I will get away with it.

Latest photos

These are the latest photos of my wife Charito (Maria).

Thank you

I just wanted to say thank you to everyone for all of your encouragement and putting up with my rants now and again. I’ve received some great messages and emails from people I don’t/didn’t even know.

I forget sometimes that there are quite a few people now that follow my blog for one reason or another. It means a lot to me to hear from each of you. Never be afraid to tell me what you think, if you think I’m being an ar** then tell me, not all at one though as I might have a little cry if you did that.

I am still staying positive (as much as I can), I don’t know for definite until the 12th to find out if it hasn’t worked, but even if it hasn’t there are still other options.

This year I’m going to try and do a lot more with my photography and continue to learn new skills. I’ve decided to enrol on a course, not decided which one yet. I have a few model shoots lined up already so far and have joined a site where I’ve made lots of new friends who encourage each other and meet up to help each other along with models and make up artists. I’m still looking for others who I can take photos of, so if you live relatively local let me know and I will come over and take some photos.

On the subject of photos Nigel (my brother) suggested I try a black and white version of the picture of me with just the eyes in colour. So here it is (with a few tweaks).

New pic

I finally got around to taking some new pictures of myself.

I’m not sure which I like best the black and white or the colour.

Either way I thought it would make a change from the Baldy Chemo pic! Im using everywhere at the moment.

Another year, but at least I look OK

Well another year has gone, I’d like to say it was one of the best, but it has probably been one of the worst for me. It’s been difficult coping with all of the treatment and side effects. When people see me they say your looking well, I didn’t look too well when I was on all of the tablets with my face swelling and rash or putting on a lot of weight and feeling like crap not being able to do anything because of having no energy at all. None of these are problems with the Myeloma just part of the treatment to get ready for the stem cell transplant. Now of course it may have been all a waste of time. Having to wait these next two weeks is going to be stressful for me. I’d like to think that by some miracle my para-protein has gone down to almost nothing, but it looka highly unlikely.

Every minute that I am waiting around either at home or out in queues in traffic or even just looking around town and then not finding what your looking for, makes me start to think about how much time I have left. I’m evaluating, is this something that I want to be doing, waiting around, don’t these people know that I might not have that long to live, get out of my way, serve me quickly – oh wait, I forgot I look ok! Perhaps people with Myeloma who aren’t showing any symptoms should wear a sign or a T-Shirt with ‘whatever it is your doing, do it quickly I don’t have much time left’, maybe my ‘Kiss Me Quick – I have cancer’ sea-side hats aren’t such a bad idea.

I was talking with Charito about the help that cancer patients get, or the lack of it. It started because when I went for my last appointment I had to park in the ordinary car park, as my pass needed renewing – it normally lasts three months, however when I asked the receptionist at the Oncology I was told that I should have handed that back in (and get my deposit back of £20) as it is only valid while I’m having treatment. So I still have cancer and still have to go for appointments, but unless I’m having treatment (chemo in any form or tablets) I have to pay for the privilege of going to the oncology. Don’t forget I had just been told that it looks unlikely that my stem cell transplant had worked and I would need to have more treatment – whoo hoo free parking, ok that actually wasn’t the first thing that I thought! So I had to pay the £2.50 car park but I haven’t given my card back as I will probably be needing more treatment (woo hoo free parking – have I said that?), I could start to put all of the £2.50 in a pot to save it up.

Talking of saving up money, back to talking about the help cancer patients get. Charito was asking why another person with myeloma that we know seems to get help. This person walks with a stick, but gets mobility and is classed as disabled. Not that I want to have more problems, but it wont be until I don’t look ok and have trouble walking that I will get any help. So now not only do I have to consider what treatment I’m going to be having, but also about selling the car or returning it as I have another year to pay on it as well as what do I do with the house, I might have to sell. I negotiated lower payments for a year on the house and reduced payments on the car. I’m hoping that I can cope at work so that I can continue to pay them. So when considering what treatment I will have next, I need to consider if I can work at the same time.

Lots of things to consider this year and of course this all depends on my next appointment. Roll on the next two weeks. No wait I don’t want to rush things I don’t have that much time left … or do I …. Oh the joys of myeloma. You will never get told how long you can expect as everyone is different. My doctor has said about five years from diagnosis depending on how successful the treatment is. Looks like I’m screwed then as I have had one year and that wasn’t very successful. If I go for an allogenic stem cell transplant (bone marrow from sibling if there is a match), it will take nearly a year again to get ready and a year to recover. So there is another two years gone, three in total of the expected 5 and if that doesn’t work, try something else. I wonder what would happen if I didn’t do anything. Don’t forget I look OK when not having treatment. Do I just wait for my bones crumble, how long would that take, or until my kidneys give up.

If only myeloma was measured by how well you LOOK! – So if you know me and you have read this, please don’t tell me how well I am looking, you might just end up with a smack in the mouth, maybe not, my hand might crumble!

Happy New Year everyone lets hope it’s better than last. :)