You may recall that a few weeks ago I was really pleased that I was able to do an hour or so’s exercise using the Wii Fit. Well, that stopped perhaps four weeks ago when I just seemed to run out of energy, to feel lethargic, and, to be honest, I really wasn’t motivated. I mean the Wii is OK but it’s essentially something you do on your own isn’t it – well that’s my excuse anyway! Maybe the fatigue is because I’ve been spending hours on-line searching for jobs. I find a lot that I think I can do and then comes the dreaded phrase, “x years experience”. Then it’s on to the next job. Usually I can get out an application for at least one job a day, often two and sometimes three, but they do take time. All the on-line applications seem to want every job and qualification listing and this can take a long time and requires a lot of post-chemo-brain concentration which is far more tiring than before I started the chemo. It is really frustrating doing job applications in this way. On Wednesday I started an application for a job with T-Mobile which took a while because of all the jobs/qualification data, but that’s fair enough if they want it they want it. Then came the “filter,” the on-line activity to see whether I understand enough not to shout at customers etc. So I started working my way through the screens and then up popped a message to tell me that the testing site was only configured to work with Internet Explorer 7. As I was using Chrome I was reasonably confident that it would be compatible but, hey, you don’t want to blow your one and only chance to complete the test by having the browser crash on you do you, and the instructions were very insistent that I shouldn’t exit the test part-way through, and neither should I close the browser part-way through, so it was a case of starting over again using Internet Explorer. That was where the problems started. I just couldn’t make any progress. I don’t mean I am so dense that I couldn’t answer the questions, but I just couldn’t get anything to happen on screen. Naturally, being a man, I wasn’t prepared to phone the tech help line until I’d failed to achieve success in every way I could think of – that took about 30 or 40 minutes I guess – you can imagine how far out of the way I could have driven had I been in a car and adopted that strategy! So, a quick call to tech support revealed that they were having a problem and they were also having a problem resolving the problem they were having; this meant come back tomorrow. I did. I went back on-line last night, remembering to use Internet Explorer, and worked my way steadily through all the scenarios that were presented to me. I even started to work my way through the pair-statement section (which I personally hate with an intensity which I cannot describe), and that was when I discovered that Windows had updated itself and was now closing my computer. OK, I admit I was so engrossed in playing T-Mobile’s “shall we employ him” game that I failed to see the Microsoft warning that this was about to happen, but knowing that really didn’t make me feel any better. Now, my computer was a better than average one when I bought it about five years ago, but since then I’ve loaded it with programs and, accordingly, it creaks a bit and runs quite slowly when powering down and re-booting so I watched the latest Big Bang Theory on t.v. and then went back and managed to complete the application form.
Today I’ve felt much healthier and have spent around one and a half hours walking to various places such as the Post Office. I’m not really sure why Americans send mail, and mail things to one another and yet use the US Postal Service and its network of Post Offices rather than using the US Mail Service and its network of Mail Offices. I find these word and phrase evolutions from British English to be really interesting. I know, I’m really sad aren’t I! After all today’s exercise I expect to feel the effects in my legs tomorrow as I could definitely feel the muscles getting to the point where they were seriously complaining about five minutes before I got home. I knew that recovery from chemo would take quite a long time but expected to be OK by now, but, still, I was poisoning my body with the ABVD for six months and it’s not quite four months since I stopped doing so. I suppose I should expect a correlation of at least 1 to 1. The progress is upwards and that’s the important thing. I’m even having to comb my hair these days! I might even need my first haircut in over a year within the next month!
Yesterday I also went to a jobs fair. It was horrendously busy and, for the first time since coming to Florida I had to park the car on the street as there just wasn’t enough parking off-road! My first attempt at parking left me pretty close to a fire hydrant and I was pretty sure there is some legislation saying I shouldn’t do that, so it was off to find a different spot and walk to the hotel where the fair was being held. I signed in and was given a flyer which included a plan of the exhibitors and a list to show who was where. Naturally it showed all the stands but not all the names. From my point of view it was beginning to look like a waste of time with only low-pay part-time work for the most part, or the staff simply gave out pieces of paper saying apply on-line at this web-site, but then I was approached by a man in a suit. He asked if I had a resume. Naturally I had one. I’d spent the previous evening printing out, squaring-off and stapling 20 of them. I passed one to him and he quickly saw that I was from England. He said he thought I ought to talk to his colleague as I was over-qualified for the jobs on offer at the trade-stand. The second man in a suit arrived and told me he had married into a British family, and then we began to talk about the possibility of employment: he was pretty enthusiastic while pointing out that I would need to obtain a license before I could do the job he thought I’d be appropriate for, and then gave me his contact details with instructions to phone, which I will do on Monday.
I seem to have been living in some kind of a daze these past few weeks. I guess the chemo is starting to take a bigger toll on my energies – it’s certainly starting to take a toll on my waistline, though that’s probably not a bad thing in the long run!
It’s now just over a week since I got the good newws from my oncologist, Dr Tache, that my CAT scan results were “good”. I had to ask what “good” meant! It turns out that, as far as they can tell from the scan my Hodgkin’s Lymphoma is gone, but, as “we don’t have a Star Trek scanner” we need to continue the chemo for another three cycles. It is good news. I know it’s good news and yet, the continuing of the chemo feels like a continuation of the gaol sentence as, from the outset I was told I would be cured. When I knew the chemo was working on the cancer itself there was a fair trade off between the fatigue, the queasiness, the need to not mix with people, the limitations on where I could go, the lack of employment and cash on the one hand and the expectation of good health and a long life on the other, but, if the lymphoma is gone then there is now really nothing for me to set those things off against and in a way that is an unexpected blow to my morale. When I knew the chemo was attacking the cancer as well as my body then I understood why I walked along the street like some kind of nonogenarian penguin who, having, spent their entire life at sea has landed in port, got totally rat-arsed and lost their walking frame to boot, but now when I walk that way I don’t really understand why. I know, intellectually, that it is to make sure the whole cancer is totally eradicated from my body, that there’s nothing lurking somewhere awaiting an opportunity to leap out and scream “I’m back and this time I’m not going away!!!”, but that’s not the same thing as an emotional understanding is it? Don’t get me wrong, I’m not full of self-pity over my plight – I’ve read enough blogs over which I’ve shed many tears to know how very fortunate I am – but I’m ready for moving on and I think that, emotionally, I need something which shows that I am doing.
When I started to lose weight I thought to myself, “This is ok, I could do with shedding a pound or twenty” and I had this image in my own mind that the physical me of, say, ten years might start to emerge, but, as I look in the mirror, the me I see starting to emerge is the me of fifteen to twenty years in the future and that’s a scary thought – actually it’s also a scary image but we won’t go there! I think, though, that this image of the future is something to which I am able to attach a resolution which is to improve my physical condition, to work my body while I still can, to restore muscle tone and shape rather than looking like the proverbial bag of spuds, but, again, it’s something which I want to start doing now and yet I know I don’t have the wherewithal to do it yet, or rather I know that if I do try then there will be a loss of energy for the next few days. As I only feel to have energy for three or four days out of the fourteen day half-cycle that’s not really a good swap is it?
For the past few days I’ve felt really grotty, tired, emotional (I actually started crying when my wife sat next to me the other night) and frequently getting into a cold sweat. My temperature has varied between the low ninety-nines farenheit and the low one hundreds farenheit. At one point it hit 100.3F but, when I instantly retook it, it was down to 99.8F. It’s not the thermometer as we cross checked with an old fashioned mercury one. On top of this, I’ve had a vague tenderness in my neck and, when I turn my neck it has been slightly painful as if compressing something. My neck has gone from feeling thick and swollen to feeling as though there is a new lymphoma there, but the swelling around it now seems to have reduced and the pain and tenderness have gone. What is it? We don’t know. We’ve read the literature, we’ve surfed the web and we’ve even phoned the nurse line but the best we can guess is it may be this or it may be that or it may be something else. Hopefully, when I go for the start of my second cycle of chemo on Tuesday, my oncologist will be able to be more definitive. Hopefully. On the plus side my hair seems to have pretty much stopped falling out and my wife said with some pleasure that she thought I had a nicely shaped head. Just the kind of compliment a guy wants to hear!! My beard is starting to look as though it might belong to either Michael Finnigan or Paddy McGinty’s Goat and I would be very surprised if I’ve maintained body weight this half cycle.
I’ve been trying to give some thought to what “fighting cancer” might actually mean from my perspective but right now I’m tired and losing co-ordination so I think those thoughts will need to wait for another day.
Once more I’m reading the blogs about cancer, about chemo and now about oncologists. It’s really surprising to me how different words turn up totally different blogs.
First let me deal with why I’m awake: it isn’t to do with the lymphoma, well not directly anyway. If you’ve read any of my earlier blogs you’ll know that the main side-effect I’m getting is fatigue and a time-shift which Dr Who might well envy! Night becomes morning, morning becomes afternoon and afternoon can become anything. Last night I only got three to four hours sleep but today I felt physically OK so I mopped the floor. Naturally that wiped me out as I’d thought it might do, so around 4.45 p.m. I went to bed for a nap, woke up just before 7 p.m. and here I am now at almost 2 a.m. busily trying to occupy myself. It has to be the chemo, right? What else could it be? I know it’s expected to make me feel tired and fatigued, that’s natural enough when you are pumping chemicals into your body which are really trying to kill it. I mean it makes sense that your body says, “Do we keep him on his feet and running about or do we send the energy to the defences? Defences it is then!” I can understand that, and everyone I spoke to said the chemo will leave you sleeping a lot. But it hasn’t! Is there something in there they didn’t tell me about that acts like an energiser of some kind? I could see that going down a bomb at the Olympics. –
Chemotherapy Patient Beats Usain Bolt in 100m Final
Naturally this would be followed up by the usual doping tests only to discover that the ABVD drugs aren’t on the proscribed drugs lists for athletes. I guess I’m back in Monty Python mode lol.
Reading the blogs really does me a power of good. There are blogs which make me cry, not really from sadness but just from being overwhelmed by the emotional feelings released in me as someone recounts their story and what they are doing. There are others where people are pretty much matter of fact about everything. There are blogs by the cancer patient’s family. There are even one or two blogs where the cancer patient has had a goodbye posted posthumously and I think that must take great courage to write as well as being a very emotional experience for the family involved in the posting. The thing which strikes me most though is the humour that runs through them. Nearly every blog has a humorous slant at some point and that’s great. I really think humour is an excellent sign that someone is being positive and we all know that being positive is good for us.
The blogs which give me pause for thought are those which just stop. They seem to end in mid-air almost. There’s nothing building up to them ending, there’s no statement that they are ending, they, simply, cease to progress. I find myself wondering why this might be. OK, we’ll deal with the nasty one first. They may just sit there because the owner died. It’s inevitable that this will happen with some, but there isn’t really a feeling of that having happened. People who have described symptoms and side-effects previously haven’t mentioned anything out of the ordinary and all is going well, so, death seems an unlikely culprit for the majority. An alternative, and much more pleasant, possibility is that the owners recovered, but, once again, there isn’t really a feeling of that sort. You’d think, wouldn’t you, well at least I would think, that if you had the all clear then you might announce it on your blog about how ill you’ve been? So, if there’s no such announcement we can, sadly, probably rule that out too. So what is the truth about these blogs? Did the owners simply tire of the effort required to develop and maintain them or are they some kind of virtual crew for the Marie Celestes of the blogging world?
I’d love to hear what other people think about these.
that I’ve deleted the appallingly self-pitying page I created last night! Yes, I really was that low. Yes, I really was that worked up with the world and, yes, it really was that bad though none of it had anything to do with my cancer!
The other good news is that the meeting with our attorney, Collett Small (whose services I wholeheartedly recommend), went well and Collett anticipates no problems with the immigration interview with USCIS, as my wife and I are clearly a genuine marriage. The bad news, or potentially bad news, is that the 10 minute drive to Collett’s offices and the fifteen minutes we met with her left me pretty much wiped out. “Wiped” is actually a good verb to use here as, in an air conditioned office, I was wiping cold sweat from my forehead within a couple of minutes and the hair at the nape of my neck was saturated. My wife said that my face had also gone very pale. My throat went dry so I was swallowing more and my voice went up by, what sounded to me, at least half an octave. You’ll have recognised immediately that all of these are, or rather, might be, characteristics of someone telling a lie. I trust the USCIS agent who will be carrying out the interview will have sufficient experience to be able to distinguish between the physical side-effects of the chemotherapy medication and a lie. I’m sure they will. Yes, I am. Honestly, I am. What I was surprised to learn is that there’s a possibility that my passport will receive the appropriate stamp at the immigration interview with USCIS. If that happens that would be really good as it would be something to take off my “to worry about list”. There’s not much on that list these days, which is good as I don’t have much energy to spare on worrying, but everything on that list relates to one or other of my loved ones and they really are worth worrying about though some of them need it more than others at the moment.
My body clock got another huge jolt yesterday and is perhaps heading back towards normal now. As I wrote above, the trip to the attorney’s wiped me out and I had to have a lie-down when we got back home, but, much to my surprise, I didn’t nod off. No, instead of nodding off at 5 p.m. I was still wide awake this morning at 2.30 a.m., or about 14 hours after I’d woken up. I thought that being awake so long would at least mean that I then got to sleep throughout the remainder of the night, but no, I was awake not much after 5 a.m. and then had an hours doze from around 7 a.m. I can feel the physical effects of the fatigue as I type. There’s a lack of co-ordination, my head is beginning to feel too heavy for my neck, my eyelids are feeling even heavier and my eyes are burning. It’s better than vomiting though, isn’t it.
On the other hand, maybe the reason I slept so badly was that I realised how ridiculously self-pitying and self-indulgent the now deleted page was and was worrying about anyone reading it before I took it down.