I was lucky enough to capture this outside my house in the front garden.
Monday, 29 August 2011
My wife is brilliant, not only does she work hard in her three jobs, but on her day off she does everything around the house, cooking cleaning, ironing etc. Today she has even cleaned the car for me. She is just wonderful.
Saturday, 27 August 2011
I was at home on the computer in my office (spare room) when the rain started. It sounded really heavy, so I had a look out of the window and sure enough it was coming down really hard. I’ve seen rain as heavy before so I wasn’t too worried.
I thought about Charito looking out at her party; I’m sure she has never seen rain like it. It turns out though, she was oblivious to it raining while she was with her friends. That is until it was time for me to pick her up.
I got a phone call at about 10:15pm asking me to pick her up at 11pm. No problem I thought, I went out to the car to set off and the rain had eased off to a drizzle again. It had been raining heavy off and on all night. I arrived at her friends house and it had just started raining again.
On the way home down Sealand road (aptly named) it just got worse and worse. It was raining so much that I had nearly come to complete stop as visibility was zero. Some cars had stopped altogether, but I, like others were taking it very slowly. Charito was a bit scared and to be honest it was pretty frightening. I have never seen rain as heavy as this, it was as if someone was just pouring tons of water from the sky all over the roads and cars. The wiper blades were going as fast as they could and I still couldn’t see anything. I thought about the houses near me in a place called Saughall. The last time I had seen anything like this amount of rain coming down, the houses in Saughall were flooded with the water rising higher than their front step leading into their house. I still don’t know if that was the case last night, as I haven’t seen any local news.
As we moved further up the road it eventually eased off. We started to smell something burning and Charito asked what it was. I had no idea and thought maybe the electrics had been damaged in the rain because at some points it was like trying to drive through a river and the water splashing up inside may have caused some damage. Then I noticed the car in front of me was slowing down and eventually came to a halt on the roundabout. The smell was coming from the car in front. I can only think that they had been revving their engine too much and maybe it had overheated or something (I’m not mechanical minded in any way and have no idea about cars). I do know though it wasn’t my car, which pleased me.
We got home safely but it was a relief to be dry and in the house, warm and safe. It was an experience I wouldn’t like to repeat on a regular basis. I feel sorry for people that are caught up hurricanes and have to deal with much worse than what we went through. It must be devastating.
Friday, 26 August 2011
Now that title probably got your attention! Let me explain. I was having my Hickman line flushed at the hospital on Thursday and was talking to the nurse about how good the line has been. It always works well and they are going to keep it in for my transplant, rather than change it for a new one. As I am a bit sarcastic, ok a lot, I flippantly remarked I keep it clean by connecting the shower hose to each of the lines and give it a good flush when I’m in the shower in the mornings. Jen (the nurse sorry Jen he he) continued to talk about keeping it clean and then realised that I said connect the hose to the line and suddenly stopped and realised I was joking after a bit of a shock.
She laughed and said I’m so gullible …. mmm, I thought, here is another opportunity. You do realise that gullible isn’t an English word and isn’t in the dictionary don’t you! Most people use it, but its not a word. Another pause from Jen … isn’t it! Now I’ve said this to others before and actually got them to look it up in the dictionary to prove the point. This time I couldn’t keep a straight face and just looked at her … err what does it mean Jen … again realising what she had just said she laughed. It’s a good job she has a sense of humour and didn’t hit me.
I wonder how many people will be trying that with others … or more worrying; how many started reading this and thought it wasn’t a real word!
If you don’t already, add me to tweeter Sean_Tiernan. I will be tweeting all the way through my transplant, including all of the gory bits no doubt. So if you really want to know what’s it’s like and want to ask any questions as I go through it then add me to your list.
I will also be using Google+ a lot to keep everyone updated as well as here. On Google+ I will be using the hangouts to chat via video and will add pics etc. Not that I think there will be lots to take pictures of during my stay as they will all be of the same room!
Before I start speaking about old age, I would just like to mention something that happened when I arrived at the hospital. I pulled up in the car park and reversed and Charito say’s ‘There’s Chris’ van’! To my my surprise, sure enough, parked a few yards away was my next door neighbours van with the distinctive yellow and blue logo of CJS Couriers. I was surprised to see it their and was worried that one of them (Chris, Jodies or Sophie) might have hurt themselves as it was parked very close to Accident and Emergency. I called Chris on his mobile to find out if they were ok and sure enough they were fine. Chris was in the Van so I walked over to speak to him.
It was a scheduled appointment for Sophie as an outpatient. She has had problems with her Tonsils as they are very large, but she is OK. I saw Sophie later on when we got home and she tried to show me her tonsils while at the same time navigating a polo mint in her mouth. So everything was OK, but it was worrying to see someone in the hospital when you don’t expect too, you always imagine the worst!
I just realised as I was writing this that the title is Old age and then the first thing you see is a picture of my neighbours …. Jodie is bound to tell me off for that if she see it.
Back to the main title theme .. After arriving at the hospital and then settling down in my chair on the ward, there were a few new faces again. It turns out that their were a few people that just come on the ward twice a year for some medication to be administered, I’m not sure what it was or what was wrong with them, but the point is I had never seen them before.
There was one man in particular that must have been in his 70’s that sat opposite me, who’s name I think was Fred if I remember rightly. He was hooked up to a drip similar to me and was waiting for some drugs to be made up. He was quite chatty and had all of his senses, I can’t say that about everyone that comes on the ward and I don’t just mean the patients! One of the things drew my attention to Fred was that when he arrived he asked one of the nurses if it was ok to plug in his laptop computer into the power socket. It took the nurse by surprise a bit I think as she commented on clever he must be to use a laptop as her mother hadn’t got a clue. I must admit though I was surprised as normally most people of his age wouldn’t have a clue, I don’t mean that in a derogatory way, it’s just that they haven’t used the technology much as it moves so quickly that the older generation haven’t got around to learning the new skills.
Fred on the other hand seemed to embrace it. After setting in and him sending his wife and family off while he waiting patiently, I got to know more about him. Not only was in waiting for whatever drug he was waiting for, but he also had dislocated shoulder that was causing him pain and they were going to operate and replace it with a plastic one as his injury hadn’t healed. So he was using his computer with only one arm as well, which is something I think I would find even difficult.
He had a really good sense of humour and didn’t complain too much about the pain in his arm, although you could clearly see that it was causing discomfort, especially when one of the nurses tried helping him get out of the chair to go to toile and they weren’t listening to him tell them not to try lifting him by his arm. The other arm had the drip on and the nurse was trying to support him from the other side while at the same time talking to another nurse. To me it was clear he was in pain and I even mentioned it, but they were oblivious wrapped up in their conversation. Fred just got on with it and managed to get up and make his way to the loo and back though. If it was me I think I would have screamed at them and hit them with the drip, but that’s just me on a good day .
I asked Fred how he injured his arm and his answer perhaps give you an incite into the type of man he is. ‘It was my own fault’ he said ‘I was in the garden and decided to break up some concrete’ - He isn’t a big man, in fact you would look at him and think what a lovely old man. Then he said he was trying to break up the concrete and it must have been the shock running up his arm that damaged his shoulder as he swung the sledge hammer …. yes a sledge hammer! That’s when I really new that this man has led a really good life. His whole personality was one of not giving up and getting on with things as well as keeping his sense of humour. He had me laughing on several occasions throughout the day and I would quite happily spend lots of time talking to him if I ever got the opportunity again. He struck me as a person who I could easily invite around to my home and spend hours and hours talking to and having a laugh with. Now for me to say that is quite a compliment for those that know me. I don’t have a lot of patience at the best of times and I could probably count on one hand the number of people I could happily spend time with, but Fred one definitely be on my list of people to spend time with.
I think now that I have cancer and (pretty much) unlikely to see old age (although according to my children I was old about 20 years ago) it makes you think about it more as you see older people and the life that they have led and are leading. How much respect do we give them after everything they have gone through and the life changing experiences they have had. Some of them have survived world wars and grew in hard times than we are now. Every generation thinks they are hard done too and I think we are in our own way, but lets not forget that each generation is making the future for the next, so we are only here where we are now because of the older generation. More worrying is that the younger generation are doing the same for those that follow, what will the world be like if lose all respect for people and property as it seems they are doing with the recent riots etc here in the UK.
Maybe it is good at times not to reach old age….
Wednesday, 24 August 2011
It has been hot in more ways than one this week. As you know I started using the cream on my feet and also on my shingle pain. The capsaicin cream is made from cayenne pepper and is supposed to be really hot. I say supposed to be as at the beginning of the week when I first started using it, I never felt anything at all; no heat, nothing! However Monday was a different story, I think it’s because the effects of the Velcade had started to wear off.
Putting the cream on you are supposed to use gloves, at least that’s what one of the instructions say to use, alternatively you can wash the cream and the burning sensation away using vinegar. Well on Monday morning at about 3am I awoke in a lot of pain with my feet burning up. I tried everything to stop the burning. Cold water, washing with anti-bacterial liquid soap, washing with an ordinary bar of soap, washing with vinegar, wiping with Andrex wet toilet tissues/wipes, using sterile wipes. I literally exhausted all idea I had. I ended up taking gabapentin to try an alleviate the pain and watch TV to try and take my mind off it. It eventually eased off, but was still sore during the day. I didn’t put any more on than usual and while I was using it, it seemed to work really well. I even reduced the amount of pain killers I usually take, so I know it does work. I will see how it goes this week from Thursday, to see if the pain comes back again after my Velcade (assuming I get it on Thursday).
I haven’t given up on it, but will try and manage how much and when to apply it. I was using it four times a day, morning, afternoon, early evening and night. I might start using it just in the morning and night and see how it goes. I really want to try and keep using it in the night if it helps me sleep, obviously without the waking up in in pain bit.
Yesterday it was really nice here and the sun was shining. We had a lovely day with Charito’s sister Pilar and her new husband Chris. It was good to see them again after the wedding last week. It was one of my better days as I felt relatively good. It was too hot too sleep though and although I went to bed at about 11:15pm and I felt really tired I just couldn’t sleep and ended up going down stairs again at about 3:30am. I ended up going back to bed at 6:30am, but still couldn’t sleep. The last time I looked at the clock it was 7:30am before being woken up by Charito to get up and go out to the doctors for an appointment at 9:10am (Charito’s appointment now mine for a change).
So although I’m really tired I’m still going to try and stay up so that I can get to sleep tonight, if I don’t I might be in the same situation tonight.
Saturday, 20 August 2011
After my appointment on Friday we (Charito and I) met up with Paula and Bernard (http://feresaknit.wordpress.com/).
We had a lovely meal in the Living Room and caught up on how we are both getting on with our treatments. I met Paula the first time I was having my transplant, she had just had hers and was in staring in her remission, unfortunately like me it came back again quickly and we are both in similar situations now and both been on the PAD regime. Although Paula’s paraprotein is at zero at the moment. Unfortunately Paula doesn’t have any siblings so she will need to find a donor if she goes ahead with the transplant (which she probably will). I was telling Nigel about her yesterday and he immediately said he would offer if he was a match. (thats if he has any left after mine - sorry Paula get in the queue). Jodie next door also offered. So I think when the time comes Paula don’t forget to ask (sure you wont) and I will let the people I know who are willing to put their names forward.
Here are few pictures that we took at the Living Room Restaurant.
As you can see Paula is always smiling and has a great sense of humour. Bernard has lots stories to tell and enlightened us with street by street navigation of where he used to live naming lots of streets as he provided the story how he was proving someone wrong about the Town Hall in his old town, sorry village, it doesn’t have a town hall (hence the point he was making) He used to do a paper round in the village and knows all of the street names (that he had great pleasure in naming!! that past about half an hour of time ) We must go and visit to see if he was right!
I insisted on Paying (or was that Bernard insisted on me paying ) I told him he could pay next time. They bough the drinks and cakes last time we met, so it was my turn. I told him that we would meet up again after my transplant and I can go out again (ok – I did say he might be lucky and I might not make it and he could save some money. Paula found that funny – I think she has the same sense of humour as me)
We had a lovely time and I did promise I wouldn’t pop my clogs and assured Bernard we would meet up again, so he will have to pay. I must make sure we go for a BIG three course meal and make him pay
I had my appointment at Liverpool on Friday. I was expecting it to be with Edwina the transplant coordinator, but I first say a new doctor called Sabastian. We basically went through all of the things I had gone through in the past about the risks etc of the transplant and the survival rate afterwards. 20% – 30% survival during transplant and 15%-20% survival within the first year (that sounds much better than 70% – 80% chance of dying during transplant and 85% – 90% of Dying within the first year, don’t you think!)
Although I haven’t got and exact date yet, it said it would probably be the last week in September/ first week in October. Which probably mean mid October. Hopefully the soon the better though as I have to continue with the Velcade up to that point. We have agreed that I will stay on the Velcade on a weekly basis with the lower dose and I will put up with the Neuropathy that I have (I can manage the pain with the tablets and the new cream that seems to be starting to work) I’d rather put up with a bit of pain in my feet than for the Paraprotein to start to creep back up and it have been a waste of time for the last six or seven months.
I finally got the results back from my younger brother Nick to see if he was a match and he wasn’t; there is a one in four chance of him being a match. I’m luck that Nigel is a perfect match and arrangement have been made with Edwina on the 6 September and then a week later with Teresa who is the Haematologist that arrange for Nigel’s blood tests and bone marrow extract (I’m waiting to see if we can change the date of this appointment that was supposed to be on 15, but Nigel is at my Nephews Chris’s wedding in Southhampton, another wedding I can’t make it too )
After my appointment we had arranged to meet Paula in Liverpool. I will post another message with some pics of that.
Friday, 19 August 2011
Kit is a model and singer that I had the pleasure of taking a few shots with a few months back. I think Kit is someone to watch as I think she we be big star one day. Check out her version of Sex on fire below.
Thursday, 18 August 2011
It was Velcade day today and after much discussion and waiting, they having given me the Velcade but on a lower dose. This is because of the Neuropathy in my feet than I’m experiencing.
They were very busy on the ward today and a lot of faces I didn’t recognise, either that or the other patients have complained and don’t want to attend on the same day as me …. mmmm I didn’t think of that before!
Anyway it was quite a long day, arriving just after 9am and leaving at 3:30pm
One of the good things about today is that I got my hands on some Capsaicin. Dee the senior nurse (I must find out her proper tittle and write it down – Leave a comment Dee if you want … I know your read this ) .. anyway when she came into the ward this morning and saw me, she shouted over … now that’s interesting isn’t it; as she rubs her hands. Me being a bit thick said what is? She then went on to tell she was talking about the Zostrix and after reading my blog went off to do some research and read the clinical trials. She told me off for not reading them and said I only do half a job, which is probably true. Dee didn’t think that they would have it in the pharmacy and would probably need to order it in, but when Dave the pharmacist came in and I asked him about it, he said he did have Capsaicin which is the product and Zostrix which he hadn’t heard of is a make. Although Dee did say that we shouldn’t be fobbed off with the standard Capsaicin as it isn’t as strong, which I didn’t know (I would have known that if I did a proper job and did all of the research and read the clinical trials – I can hear Dee tell me now!).
Later on Dave came back after checking and said he had definitely got it in and there are two strengths. 0.025% and 0.075% so Dee was right (as usual) that there are two types. I haven’t put it on yet, but will try it tonight to see if it helps and I will let you know how I get on. Thanks again to Denise for pointing it (send me an email Denise and let me know a bit more about you, I only know your name as you use the anonymous comments options - email@example.com )
Oh on the Velcade issue the Dr showed me a print out of what they use to judge if they should go ahead with the Velcade or not. I made a note of the website that it was printed off, it’s www.rxlist.com the page with info on that they refer to is on page two after searching for Velcade. Table 3 on the page has the following information.
Table 3: Recommended Dose Modification for VELCADE (bortezomib) related Neuropathic Pain and/or Peripheral Sensory or Motor Neuropathy
Severity of Peripheral Neuropathy Signs and Symptoms
Modification of Dose and Regimen
Grade 1 (paresthesias, weakness and/or loss of reflexes) without pain or loss of function
Grade 1 with pain or Grade 2 (interfering with function but not with activities of daily living)
Reduce VELCADE to 1 mg/m²
Grade 2 with pain or Grade 3 (interfering with activities of daily living)
Withhold VELCADE therapy until toxicity resolves. When toxicity resolves reinitiate with a reduced dose of VELCADE at 0.7 mg/m²and change treatment schedule to once per week.
Grade 4 (sensory neuropathy which is disabling or motor neuropathy that is life threatening or leads to paralysis)
I’m at Grade 3 (interfering with activities of daily living) as it hurts/uncomfortable to walk and keeps me awake at night. Hence the reason they have reduced the dose. I will see what happens over the next few days.
I’m at Liverpool tomorrow so should have some further news about my transplant date.
Wednesday, 17 August 2011
After a suggestion from Denise (comments on previous post) I’ve been out today to try and get hold of Zostrix. Zostrix is a pain relieving cream that is used mainly in arthritis, but as Denise has discovered through a myeloma forum, many myeloma patients suffering with neuropathy are using it to relive their pain.
The first Chemist I went to, was only a very small local one and they hadn’t heard of it. I also asked for Capzasin which is a similar thing. Further down the road is a major chain of Chemist where I thought I would have more luck. It was very busy and lots of people waiting for their prescriptions.
Finally a person arrived at the counter and after clearly showing disapproval that more people had come into the shop, she served the person in front of me and then it was my turn. I asked if they sold Zostrix and after a pause said ‘no I don’t think so’. It was my turn to pause then as I was expecting her to go and check with someone or look it up somewhere. I broke the silence by spelling it for her Z .. O.. S.. T.. R.. I.. X. another pause and she said …’ I don’t think so’. I’m not known for my patience at the best of times, but that sort of topped it for my after waiting ages for someone to come to the counter and then her clear dislike of more people coming into the shop and now her lack of ability to clarify if they do or don’t sell it was getting me more and more frustrating. My reply …. so do you just think you don’t have it or KNOW you don’t. It was probably a good job at this point that another assistant who clearly overheard the conversation came out from the back and said ‘sorry, I’ve just checked on our list and we don’t have it in stock, I would suggest you try a larger chemist’. I thanked her and decided not to ask for the Capzasin as I think I may have blew my top with the other person if it went on any further.
It was clear that she just wanted to get rid of me and didn’t want any further customers as they already had back log and she just wanted to go into the back to carry on helping with the prescriptions.
Sunday, 14 August 2011
I feel as though I have neglected the blog this last week (again) so here is a quick catch up.
After the Velcade last week, the pain in my feet got progressively worse. I went to have my next dose on Thursday, but after a discussion with the Dr’s they decided it was safer skip this week again. I hope that the para-protein isn’t creeping back up during this time, but as the Dr said … and I quote ‘What’s the point in having a transplant to make your life better if you can’t walk afterwards’. There is the risk of permanent nerve damage from the Velcade to the point where I wouldn’t be able to walk .. maybe a good job that I skipped another week. At the moment, during the day; the pain killers seem to manage the pain so I can walk around without any difficulty. The problem arises more during the night when I’m not taking any pain killers. I wake up a few hours after taking my last pills at night. The pain just wakes me up and I can’t get back to sleep. I normally try getting up for a few hours, watching a bit of TV and having a cup of tea and then attempting to go back to bed to see if I can manage another couple of hours. Last night I took some other painkillers (gabapentin) during the night to see if that could help. I’m not sure they really did anything though as I got about the same amount of sleep as I did without taking them.
The beginning of the week I did another photo shoot of some friends children, which Charito came to with me to help me set up. She want’s to learn more about the how I set up the photography equipment so that she can help me during the times I’m not feeling good.
I was suppose to haven another shoot with a model on Wednesday, but I cancelled that as I was in too much pain the night before with my feet and I wasn’t feeling up to it.
Thursday was my hospital appointment as mentioned and I also had to do a bit of driving, more than usual as we went to visit Charitos sister and drove home again on the Friday afternoon after doing a wedding shoot (more on that another time).
So I have been pretty exhausted and stressed more than usual this last week; however the last two days have been very relaxing as I haven’t done anything apart from watch the complete Season 1 of NCIS Los Angeles. Which I must say I thoroughly enjoyed.
This next week I think will be taken up with editing all of the images I have taken. I have a bit of a backlog at the moment and still need to finish of some that I did quite a while ago.
So my target for this week is to keep occupied with image editing and get back on track.
I’m back to Chester hospital on Thursday again, hopefully feet will be ok and I will get another shot of Velcade to keep me going until my transplant date.
Friday I have an appointment at Liverpool hospital so I should have some further information as to dates and the process etc. I should also be told date to give Nigel so that we can arrange to extract his bone marrow.
The big day is getting closer.
Friday, 5 August 2011
I decided to do some more photo shoots while I had this interim period of feeling relatively OK. Here are couple of the pictures taken at last weeks shoot.
These are just a few of the images I have edited so far, there are more to come and I will probably post some more here at a later date.
However at 5:30 this morning I was woken by my feet! OK they didn’t actually speak to me or shout out ‘Sean wake it up’, but the pain in my feet was enough to wake me up again.
So here I am, it’s now 6:23am Friday and I thought I would just blog about it and take a picture of my feet
I’m wide awake again and will probably just surf the net. Can too much studying photography make you blind!
I will be taking my Dex early in the morning time today so that hopefully by the time the evening comes I can get at least a few more hours sleep than I did last night/this morning, now I’m confused, what ever the day is!
Thursday, 4 August 2011
I was back at the hospital again today. It’s been about three weeks since I had my last Chemo/Velcade. This is the star of my four week interim Velcade sessions. I’m having Velcade every Thursday at the moment along with the Dexamethasone again. This is to make sure that the para-protein stays at it’s plateau until my transplant.
Going back on the ward after three weeks off was like being on holiday and then coming home to see all of you family again. It’s surprising and a little odd that the patients and staff become your friends and life while your having treatment. We all get on well and have a laugh as well as have serious discussion about our illnesses. There are people there with various cancers and some with Myeloma as well as the regulars who have blood transfusions and blood products. It was good to catch up with them all.
As was in at about 9am and out by 12:30 ish. The process is the same, have my obs done, temp, blood pressure, pulse. Then the nurse (today I had Jane) take my bloods, clean and flush my line. They also ask if my dressing needs changing, but I did my own again this morning as I caught it in my sleep and I yanked it of the dressing a bit (fortunately not out of my chest) so I put a new one on this morning so it didn’t dangle too much ( see Vlog on Changing my dressing). Bloods are then taken, depending on what needs to be done, but normally three vial get sent off. The put up the saline drip (which you see in pic) while I wait to get the results back from the blood test. The Dr or a senior nurse reviews them once they are back and providing everything is ok with blood and I’m not in too much pain from Neuropathy or anything else that could cause problems, they then give the go ahead for me to have my Velcade. Once the pharmacy get the go ahead they make the Velcade up and dispatch back to Haematology for it to be administered. The actual injection just get connected to the line in the drip and takes a couple of seconds. Once they give the injection they let the saline flow through for a minute or two to make sure it is flushed into my system. That’s it I can then go home.
I had to get a new car park form signed today though – I went to park in my usual car park space near the Haematology but as I swiped my car park pass it just bleeped at me. It was then that I realised that I have been having this cycle of chemo for six months as the pass was issued for six months last time! So I had to reverse and park in the the visitors car park that is quite a way from the ward and a long walk. Fortunately with me having a few weeks off from the chemo I don’t feel too bad and was able to manage it without having to rest. If it was one of my bad weeks, I don’t think I would even attempt it. So I go the new form signed, this time for three months as hopefully I should be out of my transplant and only having to go to Chester for the odd appointment. Time will tell on that one.
Just as we were about to leave we had a nice surprise as one of the old nurses (old as in … used to work on the ward, not old as in age) happened to be dropping in. I’m sure you remember me mentioning Sarah who had moved onto Gastro within the Chester hospital. A lovely nurse who cared for me on a regular basis before moving on. It was nice to see her again.
I took my Dexamethasone late in the afternoon today, normally I would take them in the morning, so I’m not sure if I will get to sleep tonight!!!
Oh well at least it will give me time to catch up on a few things on the computer. Writing blogs, reading blogs, studying pornography …. err I mean photography
Speak to you all soon and as Dr Spock would say:
Live long and prosper