Yesterday my port was removed. I expected to feel different, as it had, after all been a physical part of my body now for more than a year. I have grown used to feeling the bump beneath my skin, of seeing the lump sticking out through my t-shirts like some enormously puffy third nipple on a particularly cold day, and now, it’s gone! Gone just like that. Well not quite so easily as the US health insurance industry threw in a couple of curved balls along the way . Having managed to negotiate all the obstacles placed along the way I have to say that the actual process went by really smoothly from my perspective. The nurses who worked with me at Memorial Outpatients in Hollywood, Marissa, Vivian and Sue were great and kept me amused, while in the OR Dr Eckstein and his team got on with things without me knowing anything about it until I came around. As I said I expected to feel different, this is, after all, a significant moment as the last part of my chemo treatment is removed. Strangely I don’t feel different, I don’t feel elated, I don’t really feel anything about the port going except somewhat sore and a little curious to see whether or not I have another interesting scar to match the one on my neck from my biopsy.
Category Archives: Hodgkins Lymphoma
It is now almost one whole year since I ceased being dosed with the life-preserving poison known as chemotherapy. It’s now about six months since I started feeling mentally and physically capable of concentrating for periods longer than a few seconds, and of remembering things from day-to-day rather than losing the thought within minutes, and, so, I started the search for work. It felt like a giant step at the time especially as, just before Christmas, I was told that I was being put forward for a job with a recommendation from HR that I was the best person for it. In the event the job went to an internal promotion and I never got as far as an interview with the decision-maker despite having spent hours getting my MS Office skills back to where they had been a year before. Then came the lean months, the months of staring into my laptop’s screen and wading through all the jobs that are available out there. To see so many jobs is really great. To be able to apply for such a small percentage of them is not great. To spend a couple of hours or more preparing a CV/resume tailored to each position and yet to hear nothing is very definitely not a rewarding process. To receive an email saying, “you’re through to a telephone interview”, is, initially a fantastic feeling, but, after a few of those, when in my own unbiased opinion, they have gone well, and yet not hear any further from the employer really is a blow to one’s morale. To apply for a job at Home Depot as a collector of carts in the parking lot (see how American my language is becoming, I really, really, wanted to write, “a collector of trolleys in the car park”) and not get past the first interview was a real blow, especially as I’d chosen not to point out to them that placing a column of seats in the corridor to the fire escape had to be a breach of Health and Safety legislation even here in Florida. Everyone tells you, you have to turn up in person and then when they see you and “hear your cute British accent”, (their words not mine – honestly!) they’ll offer you a job, but these days you turn up and they say, “apply online”. I’ve even been to jobs fairs where there are recruiters there whose sole role was to give out fliers showing how to apply online – thanks Target, T-Mobile and others, it was almost a pleasure getting out of bed and travelling to meet your recruitment staff to discuss the jobs you have. Why do they bother turning up at all? I don’t know what kind of effect that has on other job seekers but it definitely left me not only pissed off and unimpressed with them as an employer but also it creates a negative impression which very definitely impacts on my spending plans. Maybe the spending power of those desperate enough to be applying through jobs fairs isn’t sufficient to be of interest to those companies.
I set myself a target of applying for at least three jobs a day. Most days I applied for four or five, sometimes five or six. On one day I got in an amazing 25 job applications courtesy of chain websites which allowed me multiple selections of stores at which I was willing to be considered for employment, but I got no response from any of them. I was finding it more and more difficult to motivate myself to approach my unpaid work of finding paid work with any degree of enthusiasm, and then, a neighbour phoned a friend of his who works for Workforce1 and we arranged to meet a couple of days later. It was a very simple action by my neighbor but it meant a lot to me, here was someone who believed in me and was willing to put themselves out for me. That meeting went well and I went for an interview which also went well, but I had morale qualms about what I would need to do as, effectively I would be on an IT helpline resolving customers’ problems but with a view to upselling the employers kit to replace what the customer had. Now I’ve spent a few years working in IT and helping friends and, in my experience, the problem has rarely been the kit. Some friends had a friend who was undertaking training there and who was, at that point, reported to be enjoying working there: his opinion changed when he was working directly with customers and he soon quit. I felt vindicated when I heard this, I’d possibly made the correct decision and still retained some dignity despite having to continue to depend totally upon my wife. Anyway, from this initial meeting with Martin at WF1 I was able to sign up for their program called Professional Placement Network (PPN) which is kick-started by a one week course in how to find work. They had expectations of us, for instance, we had to dress as though we were going to work, a small thing but it did make a difference, they treated us as real people with goals and we felt important. That week with Thomas Doughety revitalized me, as it did others, and I adopted many of the strategies they suggested, however the pattern continued to be the same. Then through PPN I got involved in helping at a jobs fair where I met Shannon, and suddenly it did seem as though, when someone met me, they would think my accent was cute, and they might offer me a job, but first I had to go through a telephone interview with Shannon’s assistant, and then another telephone interview with Shannon and of course these things take time don’t they as they work to the employer’s timescales and not those of the unemployed and, in the interim, my wife and I had met with some friends, one of whom is a teacher in a private school about 18 miles away, and she suggested I contact the school with a view to acting as a substitute teacher. I explained that I didn’t have teaching qualifications in Florida and was having problems convincing the school district of my qualifications, as in England, universities don’t )or at least they didn’t when I was a student) regularly provide transcripts which seem to be de rigeur here in the US. Lisa responded that as a private school such things might not be necessary, so I wrote to the school with yet another carefully crafted resume and after a few days the school got in touch and said they would like me to teach a lesson being observed by around four staff. Now, I’ve taught lessons as a student with class teachers, headteachers, and even HMI watching me. As a qualified teacher I’ve gone through HMI and OFSTED inspections as well as annual appraisal by my managers, but I was more nervous of teaching this lesson than for any of those. I mean I had no idea about what the pupils knew, so I didn’t really know where to start let alone where I was going to finish, but, in the event, it went well as did the interview afterwards, and we left it that the school was interested in me and would get in touch when they knew what they had to offer me. That sounded very similar to one interview I had for a job selling cars where my interviewer and I both agreed at the end of the interview that we were both interested in taking things forward and then I got told they weren’t. Anyway, you know the old saying, “It never rains but it pours”, well, my heavens opened. I got a call from a company I had applied to four months earlier saying they would like to speak to me. Great, except it went to voice mail and so we played telephone tag for a couple of weeks, or, more accurately, I was trying to play telephone tag but Sylvan never called back. It was at this point that I had the second telephone interview with Shannon, and then a friend suggested applying to another company for casual work selling vacations and they wanted to interview me as well, so, suddenly, from having nothing going for me, I was waiting for Sylvan to get back to me (they never did), for Shannon to take things to the next interview with a local manager, for the travel company to move on from the three hours of interview process and for the school to get back to me. Of them all I preferred the school option as Sylvan would probably be only part-time, Shannon’s job was commission only selling financial plans and I don’t want to turn into the kind of guy who annoys everyone he meets by trying to sell them some kind of a scheme, the travel job was minimum pay with success basically depending upon the hours put in and it was pretty clear that meant 9+ hours per day on the phone and that would be 7 days a week in order to make a decent income. Against this, I know I am a good teacher and that I can succeed at the school, but, despite telling them that I was awaiting confirmation from these other companies that they wanted me, the school still hadn’t been able to sort out its staffing needs until last week when they phoned and told me they could offer me a job! That was a great day. Sadly I couldn’t fully share my joy with anyone as my wife is abroad with her son while I had chosen to stay home and chase work. Telling family by text just isn’t the same as seeing them face-to-face and sharing the physical excitement and relief. I felt slightly bad about telling Shannon that I had accepted another job as she’d phoned and left a voice mail to say we could now go forward with a local manager and wanting to arrange a suitable time, plus I felt that we had begun to establish a positive relationship, but, a bird in the bush and all that.
I really do view getting a job as part of the return to a normal life after the chemo, and it really does feel like a giant step forward to me, and yet, I continue to read the blogs of those who were diagnosed with cancer at about the same time as me, and I read how they are now on new medications which are finally showing some signs of beating back their cancers, and I realise that, in terms of where I have been these past 18 months and where my blogger friends are in their own journeys, it is significant but less important than being healthy.
I was lucky in that I had Hodgkin’s Lymphoma which has a well-established protocol which led to my being cured pretty quickly but I know there are many people out there who aren’t so lucky and who are reliant upon some new drugs or treatment. This link is to Cancer Research UK and gives details of some of the research they are supporting along with some details of the people who are leading the research. I hope it is helpful.
This is not really much more than an update about how I’m progressing, my developing social life and my job searches.
First of all then, my progress. I think this is going quite well. I’m currently sporting a fairly unique post-chemo hairstyle the like of which has possibly only ever been seen previously on either a fashion week cat walk or at a punk concert. It’s a kind of post-punk trying to meet hippy sort of thing lol It’s definitely coming back darker than it was before it went. My stamina is also increasing though I still need more sleep and rest than I used to do, but at least, now, I can usually manage without an afternoon nap.
My social life also seems to be on the up, I’m glad to say. Last weekend saw my wife and myself attend a thank you party given by Bill Penzer for those involved in his most recent book “How to Cope Better When You Have Cancer“. It was a very pleasant party and the people there were interesting for many reasons. Bill was kind enough to give those of us who are mentioned in the book our own copy. I haven’t started on the book yet as I’ve been finishing off the one I was reading, but, tonight seems like it will see me open the covers and go for it. In actual fact I did have a bit of a dip into the book as Bill had marked the pages on which I got a mention. I’d already seen those parts as he’d submitted them to me for approval, but it was still something of a shock to read them again and discover just where I had been only those short months ago – an emotional experience. One thing which did strike me at the party was being referred to, along with several others, as a “survivor”. As I said to Bill, I hadn’t really thought of myself in that way. To me a survivor is someone who comes through something such as a train wreck. Bill was quick to point out that he sees cancer pretty much as a train wreck, but my point was that I expected to be cured, that I, personally, wasn’t suffering from a life threatening disease as some of you are, that I was told I would be cured and I have been. On that basis although my life has been significantly impacted by the cancer, and I really wouldn’t wish to downplay that impact, for me it was never life-threatening and so I don’t really see how I am entitled to call myself as “a survivor”. There’s emotional stuff in there somewhere I think and, yes, it is quite possible that I’m unknowingly choosing to create a perspective which allows me to avoid that emotional impact.
My wife I are still going along to Davie Police’s Civilian Police Academy and thoroughly enjoying it. This week we were taken through a homicide investigation by the investigating officer Detective John Stokes. The investigation was fascinating and made all the more so by the, shall we say, especially unique, style of the presentation. Looking ahead to Sunday I get to join one of Davie’s finest for his shift from 2 p.m. until midnight. Some people on the course have already had their shift in the car and were tremendously enthusiastic about the experience and what they had learned from it. Hopefully I will have a similarly interesting experience without anyone deciding to take a shot at us!
As a measure of my increasing stamina my wife and myself have been able to commit to going to a bonfire party this weekend, with friends Melvyn and Lisa, to mark the failure of The Gunpowder Plot and which is often called Guy Fawke’s Night as effigies of Guy are traditionally burned on the bonfire. I always associate Bonfire Night with frost, cold winds and a smoke bedraggled landscape on the next morning; with wrapping up in woolly hat, scarf, gloves, two pairs of socks and a duffle coat (doubt there will be many dressed like that despite being in autumnal Florida!) while eating roast potatoes made by Jackie’s mum, Mrs. Taylor, wrapped up in serviettes so that they wouldn’t burn our fingers while melted butter would dribble down each chin. By today’s standards I suppose the fireworks were relatively weedy affairs but I still remember the excitement as either my dad or Jackie’s dad would fasten a spinning wheel to the outside of the toilet door – I ought to point out that back then no-one in our street had an indoor toilet – and we all waited with almost bated breath to see whether it had benn affixed too tightly in which case it wouldn’t spin, too loosely in which case it would fly off and gyrate around the area, or whether it had been fastened just right and would spin away happily. Sadly out of the two families who got together for the fires only two of us are now alive and if I’d had my cancer a few years earlier there might only have been one.
My job hunting continues apace and I have to admit that I find it quite tiring. I’m applying for a wide range of jobs so each application needs to have it’s own resume and to produce a good customised one takes quite a considerable time. Then there’s the time taken to fill in the online applications. Usually this goes well but then there are instances such as today with the Comcast site where having completed each field on the form I pressed submit and got a message telling me that I couldn’t submit the application until I had filled in two additional fields. The only problem is that those two fields aren’t on that form. Yes, I’m absolutely certain they aren’t. I looked. I looked again, and again. I did a search with CTRL + F and the only time the relevant words came up were in the error messages. Is there a help function. You betcha, of course there is. Does it work? You betcha, of course it doesn’t there’s a Java error. Is there a contact us either on the job ad or on the job form. Of course not. So it occurs to me that maybe the problem is because I’m using Chrome and I decide to try the same thing with Internet Explorer. The problem (well you knew there was going to be a problem didn’t you?) was that going into the site again I needed to log in. Now, I don’t know about you but my log ins are pretty much variations on a theme so, even though I couldn’t remember what they were for this particular site, actually I couldn’t even remember them for this particular site, I was happy to give it a go and guess what they probably were. My guesses were futile but I wasn’t going to be outdone. “I’ll do it again for a different email account”, I thought to myself, so I did but I wasn’t required to log in, or create a password before starting the application so I was no better off than before. This is a major company and there is no direct way of contacting them about this. Other than that I applied, amongst others to citi a while ago and today had my telephone interview. I may, or may not, hear from their “local recruiter” in the next seven to ten days to take my application to the next level. So far since starting my job hunt I’ve usually applied for two or three jobs most days and I’m hoping that some of them are now sufficiently far advanced to be looked at by a real person.
It’s now quite a few weeks since I was told that my cancer had been defeated and that I am now clean and the intense sense of elation continued for quite a while being supported by such amazing events as my eyebrows and eyelashes growing back so that my face started to look something like it had done before the chemo, being able to climb the stairs without having to pause or take them one step at a time, being able to go out and have meal and so on, but, by the end of last week and through the middle of this, that feeling of elation had disappeared and the best that could be said of how I was feeling was “flat”: a more honest self-appraisal would probably have been “down”, not depressed but very definitely down. There was no particular reason for this, nothing had gone wrong, I was and am still very grateful to be alive, but I definitely felt a bit down and a little stressed. As I said, I don’t really know why, perhaps because I had been up for so long, perhaps because others think I am now fully functional and back to normal all the time whereas I know that isn’t the case and trying to be that way all the time creates its own stresses. Perhaps I was like that because I’d simply done too much physically exercising on the Wii most days and doing house-work to boot on occasion, and this activity had left me drained.
Whatever the cause things began to change yesterday (Thursday) when I went to take my written and practical Florida driving tests. Now, I’d worked pretty hard on learning the Florida Drivers Manual. I’d learned enough to answer pretty much every test question correctly every time and felt really confident, but that was on Monday. When I woke up on Tuesday I felt as though chemo-brain had returned. I found it hard to read and almost impossible to concentrate. By Wednesday things were worse and numbers that I had been sure of had started to slip. By Thursday morning the numbers were all over the place. I had to return to my own lane after overtaking a vehicle before I came within how many feet of an oncoming vehicle? How wide does the median have to be before I don’t have to stop when a school bus stops on the other side of the road? Was the answer to the first of these 5′ and the answer to the second 200′ or was it the other way round? Blood alcohol levels were something I’d have liked to experiment with as I couldn’t remember any of the legal percentages and neither could I remember the length of a potential prison sentence, the number of points accrued, whether a licence would be revoked or suspended or what the size of the fine might be. When it came to littering I knew 15 lbs to be a significant number, but not why it was significant. I tell you, things really were that bad! Things got worse when I sat at the computer at the test center and discovered that the previous candidate had failed their test – I knew this because they’d not bothered to press enter and move on to next screen. Thanks mate! Great boost for my morale was that potential omen. Anyway, I answered the questions to the best of my ability, cursing my “chemo-brain” for forgetting some answers that I’d known only a couple of days previously and being amazed that the answers to others popped into my head from nowhere at all. I didn’t get them all correct but, eventually, a box popped up on the screen telling me that I had passed. Wow!! I was excited, amazed and relieved, and went to ask the relevant officer what happened next. I was told to take a seat and I’d be called in a few minutes. It didn’t take even a few minutes before I was called back to be told that I hadn’t actually finished the test as there were a further twenty questions. I told you I had something akin to chemo-brain. You can possibly guess how red my face was at this point. If you can’t then just think of the color of a STOP light. Anyway I passed the second section as well as the first and eventually took and passed the practical driving test. This very small success had a hugely disproportionate effect on my morale. I knew I still had something like chemo-brain but I suddenly felt not only relieved but more self-confident because after some nine months of chemo battering and recovery I had finally achieved something by myself. After not driving for over a year I was suddenly back behind the wheel of a car and it felt GOOD!
Today I joined a group of students and staff from the school at which my wife works for a sea kayaking session. It was so much fun to be standing waist deep in warm sea water watching other people go through capsize and re-entry drills. A world away from when I first started kayaking in the cold Easter-time waters of a reservoir in the Pennines using closed cockpit white water kayaks. Would I have swapped the experiences – no, not at all but I am really glad that I’ve lived long enough to enjoy both and I plan to continue to do so! So, thanks Laura and company for a really fun session!
The end to pretty much a perfect day was pizza on Hollywood Beach with my wife as the sun set. Thanks Joanne.
Do I have the post-cancer-cure blues now? No, of course not!
Yesterday was the second night of The Town of Davie Police Civilian Police Academy and, just like last week, it was really enjoyable. Officer Weissberger did a session on traffic and road traffic accident investigation which was fascinating: the session included using radar and laser speed guns. The speed gun session was great. Officer Weissberger’s motor cycle was parked alongside the road, he was in uniform and there were twenty or so civilians gathered around with three at a time lining up the speed guns on approaching cars. It was hardly surprising that we didn’t catch anyone breaking the speed limit although we did see quite a few cars slow down as they spotted us. Perhaps the most surprising thing was that we didn’t cause an accident simply because of people slowing down and staring at us instead of watching the road. One of the big issues on the roads of Davie is the introduction of traffic cameras at intersections to identify vehicles turning right on a red light without stopping first. (For those who aren’t aware Florida law allows a car turning right at an intersection to do so against a red light provided they stop first and the way is clear.) You can imagine that these lights aren’t really popular as they are identifying a lot of people who haven’t changed their driving from treating these intersections as “Yield” rather than “Stop”, but, prior to the introduction of these cameras Davie Police were attending around 400 accidents a month, now they are only having to attend around 100 a month. I found that a totally amazing statistic.
Next up were Officers Bishop and Vardakis from the K-9 team who explained about what they do and how they work with their dogs. Fascinating stuff. The demonstration was everything you’d expect with the “criminal” running and being caught by the dog which hung so determinedly that the officer was able to lift it off the ground. Likewise the narcotics search where the dog was able to successfully identify the bag which contained the narcotics. What was surprising was when we were told that the dogs view all this as “play” and do it for the reward of a bouncing tennis ball! The dogs live with the family of their respective officer and are a part of the family. Seemingly the dogs recognise, and respond, to the difference between “home” and “work”. It seems that American bred German Shepherds are no longer suitable for police work and the Davie Police use Belgian Malinois instead.
In terms of my recover from the Hodgkin’s Lymphoma and the chemo therapy things have improved so much that I failed to remember my appointment with the oncologist so I’ll have to wait another month or so before I can see him and make a plan for the future. Strange that this should be the first appointment I’ve missed and that it is also the first after I’ve been declared clean – perhaps part of me is already in denial!
Another positive note is the Yorkshire County Cricket Club achieved promotion. Well done!
My wife and myself had an interesting evening with Davie Police on Tuesday. No, we weren’t their guests in the sense of being arrested! Our local police force runs a “Civilian Police Academy” which runs for three hours per week for ten weeks and it looks as though it will be really interesting and enjoyable. This week we met the senior officers, Chief Lynn, Major Moyer, Captains Engle and Squarini, and last, but by no means least, Sergeant Choquette. The thing which really struck me about the evening was the quality of the relationships between all these officers. There was lots of banter and leg-pulling but, underpinning it all, was a sense of the respect they held for each other. This first week was mainly admin and a tour of the station, but future weeks will include the K-9 dog handlers doing a demonstration,with other sessions by the Dive Team, the Crisis Response Team, the Special Response Team, the opportunity the use the firing range and handle a variety of weapons and a chance to go on patrol in a squad car. All this and much, much more as the saying goes.
In terms of my health I continue to improve. My hair is growing back but is definitely darker than it was before I had chemo, strangely it also seems to be softer, at least it does on my eyebrows and beard. Strangely also, considering that the hair on top of my head is coming back darker is the fact that my beard came back white but is now turning grey! I was also surprised that, as hair grew back on my head and my body, the hair which had survived the months of chemo fell out. I hadn’t been expecting that at all as I just thought there’d be a mix of new and old as it were. It’s also strange to see the pattern in which the hair is growing back on my limbs. Have you ever walked through an area newly planted with trees? No? Well, the trees are planted at roughly equidistant intervals and in rows which track in straight lines at 90 degrees from you but also along diagonals, and this was something I hadn’t previously realised as I’d thought the hairs just kind of grew at random. My mental functioning is also returning although I haven’t yet been able to crack the website to book a written test to apply for my learner’s driver license here in Florida. Physically my stamina is also coming along well. We have a Wii fit and I’ve been using that for a little over a week. It’s not particularly intense which suits me fine but I can repeat things if they go badly and can see the improvement not only in my endurance but also in my scores though I think I am still quite a long way from having either the strength or stamina to make a trip to the gym worthwhile. I still have crazy sleep patterns which see me sleeping for a couple of hours at night and then being awake until 6 a.m. or later and then sleeping through ’till around noon. I always used to find it difficult to sleep during daylight hours but not now. The afternoon naps have dropped off though.
I’ve also started looking at job ads. I found one I’d quite like but couldn’t get enough of my brain together to write the c.v. I hate writing the introductory paragraph: I can write the damned paragraph easily for other people but when it comes to writing my own it’s a totally different matter and I hesitate and hack words around and then delete everything and thus the process starts all over again without really going anywhere. Doh!!!