One Wild Night

In fact, 2 Wild Nights living it up like the rich and famous; I have recently attained VIP status and there is even a pass to prove it!

Way back in November, when I spent my days donning a plastic mask and getting zapped by a futuristic particle accelerator, the incredibly great radiographers at the Clatterbridge Centre for Oncology encouraged me to complete an application form for the Willow Foundation; a charity aimed at providing special days for seriously ill 16-40 yr olds. I had been reluctant at first, as I didn’t feel I was seriously ill anymore and thought that the money could be spent on someone more worthy. However the radiographer advised me that it was exactly for people like me and that even though I may be on the road to recovery, I still deserved a special day to help move on after treatment and to help me get over it all. She also told me that I would be the only person to ever decline the offer and so I went for it. This was probably one of the best decisions I EVER made!

7 months later I found myself at the very front of the sell out Bon Jovi gig at Manchester, Old Trafford Cricket Ground with my carer – Eve. This is because we had entered the “Diamond Circle” as a part of my Diamond Ring VIP package to the event.

Look how close we were!

The whole day was amazing from start to finish. We were picked up in a taxi from Liverpool and driven to Manchester. When we arrived we got handed our VIP passes and free gear (canvas bag, tour program etc.) and made our way to the Pre Show Party. In the Party we indulged in a few cheeky drinks (it was an open bar – hence the taxi) and a hot carvery buffet before mingling with several other VIP’s (some much more important than others – find out why later). We watched the support acts from the balcony as we couldn’t leave a free bar, then headed down to the gig, nonchalantly, about 10 minutes before the band were due on, flashing our passes on the way! From then on it was 2:30 hours of stadium rock as its best as Jon and the boys blasted out hit after hit to a rain drenched crowd. Jon likened it to “taking a shower with 45 thousand of my closest friends!” After a memorable performance that even included Jon walking off the stage and around a catwalk behind our section.

Jon walks through the crowd

The band finished with all time classic and wedding disco favourite “Livin’ on a Prayer” before we headed off into the Manchester night to be met by our taxi driver. Several illegal manoeuvres later and we were home, why did it have to end so soon?! There are some more photos at the end of the post.

It was an amazing experience and one that I could never have done without the support of the charity and I want to highlight the great work that the Willow Foundation do every day, helping people like me have special days. In some cases this can be tickets to a football match, others a few precious days away with the family, some a driving experience, you name it (literally). In ALL cases young adults who have been affected by life threatning diseases are left with something to look forwards too, a great memory, a chance to forget what they may be going through or have been through and do something amazing! I intend to make sure the charity is reimbursed with every penny that they must have spent on me (a not insignificant amount) by using work events and company £ 4 £ matching. But if anyone else feels in some way like they want to help, then please do so via the charity itself by offering money, by attending an event, even by offering a service or event that they may be able to provide to people who are looking for inspiration?

Anyway, things didn’t end at the Bon Jovi concert, oh no…

As we were tucking into the open bar and free carvery afforded to the VIP set at a Bon Jovi gig, we were fortunate enough to meet one of the loveliest families in the country. The Westwaters had arrived, slightly late and sat at our table. After a lot of chatting and joking with David and Sarah, after blowing the surprise of a fresh-out-of-rehab Ritchie Sambora to Madison (one of 2 very lucky daughters – and Ritchie’s biggest fan) and after admiring the banner brought along by Arielle (daughter number 2) we were about to go down to the merch stand to buy an (obligatory) tour T-Shirt when David and Sarah offered us the chance to go an see Take That, VIP (of course) in Birmingham! What a great offer, and one that we took up (after Nan and Grandad agreed to look after the baby – again)! We travelled down the following Tuesday and had a brilliant time, hosted by the Westwaters in their private box – David was delighted that his name was on the door, I think he took several photo’s to savour the moment! The band came on after a three course meal, free bar and a warm up by the Pet Shop Boys. We all had a great time, especially Arielle who was there to see Gary Barlow in particular (He’s her favourite). We got to meet Leighton and Aunty Diane too. I think Leighton enjoyed the concert, even though he spent most of the time playing XBox with the catering staff – perhaps early 90’s boy-bands weren’t his thing ;-). Anyway, if you are reading this guys, thanks again for hosting us. We had a great time and we will always remember it!

The concert itself was pretty spectacular. The band were on top form and sold out the stadium 2 nights over. The production was amazing and I think I was even busted singing one of the songs (you can’t beat “Never Forget” can you?)

45k Women, me and a giant robot

So I have been busy and treated like a king over the last few weeks. I don’t feel worthy, I really don’t. It didn’t end there either. Since then I have had free entry to a comedy event in Liverpool and met one of the acts (he was one of my best mates but still- Thanks Peter Michael Gerald Marshall). I have been offered a free adventure day with some friends courtesy of Grant at Anglesey Adventures (which I am defo going to do). Oh  and the baby has even decided to let me share her dummy in an all out cute-fest. I even got an award (and a cash prize) in work. VIP clearly opens doors!

Once again; thanks again for reading. The fact I am now up to 15.5K hits makes me feel even more like a VIP!

Here are some more pictures:

VIP Baby!

The venue filling up (our view from the VIP balcony)

Hanging out with the band pre-show

Watch out for the feedback there guys!

We were too close to need the big screens

"Are you with me out there?"

Wanted... Dead or Alive, Yeah!

Thank you and goodnight - What a show!

In loving Memory: Sharon Carrick

When I was diagnosed with Hodgkin’s Lymphoma back in Feb 2010 I was told that this was a “good cancer.”  I was quoted 90% cure rates with first line treatment and told that if that fails there is still more chance after that. But, as I have mentioned in the past, how does that feel for the 10% who aren’t cured? The 10% who are told the same things on day 1 but that don’t come out the other end? Maybe it is time to understand that no cancer is a “good cancer.”

If you have found my site because you are concerned that you have Lymphoma or because you have been diagnosed with Lymphoma then please take heart in those statistics as they are true. But never take anything about your treatment for granted because for some people the gulf between 90% and 100% is huge.

At the same time as I was diagnosed, the very same month, Sharon Carrick was given, probably, the very same story. She too found out that she had Hodgkin’s Lymphoma. Except now, 17 months later, I attended Sharon’s funeral. Sharon had not managed to get into a remission from Front line nor salvage chemo. She began to respond to mini-BEAM and so her medical team decided to go on to auto SCT. During this procedure she picked up an infection, a cold and was not strong enough to fight it off. Sharon was on the wrong side of the statistics with her Lymphoma and was even unluckier with her treatment. The auto SCT has a meagre 3% mortality rate. Sharon died from complications of her treatment on Thursday 7th July, 2011. She was 28 years old. She had a beloved partner and son and a wonderful, loving family.

I never met Sharon, but I was in contact with her foster mum, Julienne. Julienne acted as Sharon’s health advocate and went to her appointments with her. As her condition got more serious I don’t think that Julienne left Sharon’s side and she found me through a mutual friend when the topic of Hodgkin’s Lymphoma came up. Julienne researched options, joined forums and read blogs to gain a wealth of knowledge about this cancer and as a result Sharon got arguably the best treatment options available to her. Julienne should be proud that she gave Sharon some solid support and some well founded hope on the treatment front. When Sharon died the team had a good plan, the infection was just badly timed.

Today I was honoured enough to be invited to Sharon’s funeral. It was a beautiful ceremony and was billed as a celebration of Sharon’s life, rather than a remembrance. We sang upbeat hymns and listened to a few of many stories of Sharon’s life, work and how she used to be. I mentioned before that I never met Sharon, but from listening to the wonderful things that people had to say about her it is obvious that she was a very special person. She gave so much to so many people. She loved children and devoted her life to her Son, Coel. But she also worked as a teaching assistant and made so many other children happy. She was even a birthing partner, twice for her sister. Children were her world. It was fitting, then, that the choir from the school where she taught were there to sing a song for her. “You’ve got a friend in me” because they all did have. We also heard how strong and how strong willed she was. We also heard that since she couldn’t work after her diagnosis (because of the infection risk in a school) she decided to learn to drive instead, even having lessons the day after chemo sessions!

Finally, we learned how she loved colour and light and in particular she liked Rainbows. In one of the most moving parts of the ceremony one of her friends from the school read out the following poem that will offer comfort to Julienne, Sharon’s partner, Paul and her son Coel for years to come:

Time for me to go now, I won’t say goodbye;
Look for me in rainbows, way up in the sky.
In the morning sunrise when all the world is new,
Just look for me and love me, as you know I loved you.

Time for me to leave you, I won’t say goodbye;
Look for me in rainbows, high up in the sky.
In the evening sunset, when all the world is through,
Just look for me and love me, and I’ll be close to you.

It won’t be forever, the day will come and then
My loving arms will hold you, when we meet again.

Time for us to part now, we won’t say goodbye;
Look for me in rainbows, shining in the sky.
Every waking moment, and all your whole life through
Just look for me and love me, as you know I loved you.

Julienne, we are all thinking of you and Sharon today

With Love, Steve

 

I’m not old. Just older

31. I am now the old age of 31. It’s not a special year, not a milestone like 21 or even 30. I didn’t have a massive party or share the date with some other life changing event. I don’t even share the date with Jon Bonjovi; but for me it was one of my best Birthdays ever, simply because it happened. I made it.

12 months ago things were very different. I was at, arguably, the lowest part of my treatment. The BEACOPP had well and truly kicked in, I felt like hell and there wasn’t even an end in site as I had 6 weeks to go. I didn’t know if the treatment was working. I honestly couldn’t be sure I would make it to 31.

What a difference a year makes then? I feel fantastic, I have a *naughty* baby (who is secretly a cutie). I am back in work in the office full-time and we even managed a holiday to Wales (see Eve’s Facebook Album) and although I still can’t say I am in remission, I edge ever closer to that dream, in fact I find it hard to not just blurt out the word when people ask how I am (more on that another time)

Just add hair and ale

I had a modest celebration with my family to mark the occasion, exactly as it should be, curry and ale in Donny (plus a first class Dad roast dinner), a great spread of ‘posh’ sandwiches (hand carved meats – thanks Pat) in Liverpool and next weekend a BBQ with the gang. What more could I ask for?

So thanks to all for the cards, the gifts and the sentiments. Thanks to my wife for another year of excessive spending on gifts (next time you see me, ask me what the time is). Oh and thanks to Emily for my first ever gifts from you (I wonder how you got the money together):

Stop! Thief!

I don’t want anyone to be sad reading this, thinking about how hard it must be to have to face your own mortality at such a young age. I simply want you to all make sure you celebrate with me!

Stop being so British

You could argue that right now is a great time to be British. We have a Royal wedding a few days away the Olympics and Paralympics in 2012, we have some half decent golfers we have hotter weather than the Balearics (for a day or so) and even have a Tennis player that might win a Grand Slam in the next 5 years.

I mean, sure, its admirable that we can organise a queue, that we can make Seafood and Potatoes world-famous by deep-frying them (in batter). That we celebrate ye olde acts of terrorism that anything coloured red is quintessentially British; even that we use words like quintessential in our quaint, stammering, over polite way. But there are times when our “Stiff upper lip” does not serve us well. When it comes to our own or our families health then there are times when we should be throwing our cordial, diplomatic sense of civility out of the window, grabbing our consultants by the shoulders and saying “Listen to me, answer my questions or send me to someone who can!”

Should we do something about out "Britishness"?

You see, I have seen things over the past few weeks that make me sad that our British culture is so polite that we will not question what we are being told. Don’t get me wrong, after I had my radiotherapy I couldn’t thank the radiologists enough for exposing me to accelerated particles. I bought my chemo nurses gifts for poisoning me week in, week out. I was ever so grateful to my consultant when he was rushing along various tests and making sure I was seen, quickly, by the right people. This is all as it should be, these people did more than their jobs worth, they put me and my needs first and all of them went out of their way to make me feel reassured or well supported; I still have very fond memories of my chemo nurses who made the experience much more bearable. But lately I find myself thanking my consultant for making me wait 2 hours to get a blood test and 10 minutes of his time. I mean hang on a minute, he’s busy but it is his job I should be nice to him but why can’t I still be angry by the wait? –  of course I am angry and I moan about it to Eve but when I actually speak to anyone I just say “oh it was no problem!” because this is the British way.

But it wasn’t this that prompted my unpatriotic blog title, this was nothing compared to the stories of some of the fellow Hodgkin’s patients I have spoken to.

A common problem on the forum is the use (or lack of) more advanced scanning techniques. Now, I have gone to lengths to explain to you all about PET scans and how they are better than CT scans (when it comes to helping stage Hodgkin’s once diagnosed and for assessing response to treatment – there is still some debate re: the use of PET for routine followup), mainly because they can tell the difference between scar tissue and active disease. Sometimes, though, you will see forum members whose doctors are making decisions from CT scans alone and deciding that treatment has failed based on the size of a residual mass alone. Bad move and one that could cost the patient unnecessary toxicity. Other problems can be that we see patients left stumped by follow-up protocols or left confused on how to deal with post chemo symptoms, with doctors that can only guess at the best course of action. It gets worse though, one person who I have spoken to has been told by her doctor that she has no hope of cure, that there is no point in searching for it and that palliative care is the best that can be offered in an attempt to buy some time. Just imagine how heartbreaking it must be to hear that news – let alone tell it to her family. She then posted her treatment \ scan history and in actual fact, knowing what I know from visiting the forums and reading the scientific studies this is far from true. She has an unusual presentation that has not been confirmed by biopsy (suspected relapse should always be confirmed by biopsy where possible), she has had salvage chemo but not been properly assessed for response (no PET – and the CT was compared against an old scan, not the one immediately before treatment). She has never had radiotherapy (even though this used to be used, exclusively, to treat the disease – with great results). She has not tried alternative salvage (2nd line) chemo nor had either an auto or allo transplant. She has not been offered trial drugs that are increasingly available in the UK. She has not been properly advised and as a result taken home some terrible news that may not even be true. This is shocking.

I appreciate that this is getting a little technical for most of you guys who don’t speak the language of Hodgkin’s, but the point is that some of these things are very basic to the treatment of Hodgkin’s and  you have to trust me when I say that some very basic things have been missed. Fortunately the lady in question is going to get a second opinion and I know that she will go into that meeting knowing what questions to ask. She assures me that she will ask those questions and will challenge her options as she has every right to do. What if she had been too British and accepted the opinion of the doctor that she was assigned (she had no choice). What if she gave up now, when in actual fact the game is far from over? I know that there are people in the UK, in fact people all over the world, who will have just blindly accepted what their doctors were telling them, people who may not want to ask the questions as it may be too rude, people who think that a free service cannot be questioned and as a result people who do not get the right treatment or are heading down the wrong path and this is a tragedy.

I am happy with my consultant. He has his “ways” but he gets the job done, but most of all he appears to be doing everything the right way. I know this and I feel so strongly about the cases above because I spend a lot of time on the Lymphoma forums at Lymphoma.com. On this forum we (myself and the community) have seen hundreds of people come and go. Hundreds of stories, hundreds of test results, chemo regimes, new and interesting scientific papers on the very latest and cutting edge treatments for Hodgkin’s Lymphoma. We have seen the many different ways that this disease can present itself can relapse and can show itself with regards symptoms and scan results. We have seen what happens when someone is cured, even against the odds and when it takes someones life (even when least expected).  We have seen it all. I am pretty sure I have seen many more cases than my consultant and as a result of all this I am pretty sure of what the options are for all the various stages of the disease. My hospital sees 3 or 4 cases of Hodgkin’s a year. 80% of those will be cured first time leaving less than 1 patient a year returning for relapse treatment. Failure to respond properly to that treatment is even rarer and my hospital has 4 haemotologists. My doctor has probably seen very few cases of refractory Hodgkin’s in his life. Because of this, if my doctor’s opinion started to diverge from the grouped opinion of all the experts and long time members of the forum, of the collective experience of hundreds of patients (and too many relapse cases) then I would drop him in a heartbeat and head straight to a larger institution where I could find a Lymphoma expert. I would be on the internet searching for available trials, I would be on the forum asking for a consensus of opinion based in shared experiences. I would fight for myself, I would not accept my position and I would be… un-British about the whole thing!

What I admire most about the guys on the forum is that, primarily because they are self educators and to some extent because they pay (more directly at least) for a medical service and have a larger choice of providers, they will always seek 2nd opinions if there are question marks about their treatment. They will seek out experts in the field and they will not settle for what they’ve been told unless it makes sense. I have seen people who have rejected the advice of one doctor and had different, succesful treatment from another. They won’t take any $h*t!

Now I am not advising chaos and mutiny. I am not talking about rejecting every first opinion if you don’t like it but I am advising everyone to have a plan, to self educate and to be aware of what is normal and what isn’t and if your personal experience differs from those expectations then ask questions and demand answers. If your doctor cannot (or won’t) give you those answers then go to someone (or somewhere) who will. Be an advocate for yourself. You are the most important person in all of this. You have to start thinking about yourself.

I can’t publish my personal treatment plan (that I keep in the back of my mind –  just in case) because I don’t want to have a version of my plan being used as a reference guide by anyone who finds it in case it leads them down the wrong path. I would, however, suggest that everyone reads the current American NCCN guidelines for Hodgkin’s lymphoma as it makes some very good points (such as always confirming relapse via biopsy and the importance of the use of PET scans). You can get it here (may need to register first).

If you are reading this post then you are already on the right path to self-education but don’t stop now… Please join the forum and ask the crowd. You will soon understand your options and the opinion of the others. You will get yourself a list of questions to ask and you will be empowered to pursue the best treatment for yourself. When you do join, head straight to the following posts which address some of the issues I have covered almost immediately:

Important Threads for Newly Diagnosed Hodgers: a load of info on survivng treatment, what to expect etc…

Getting a Second Opinion (in the US): a great resource for those of us who want to question what our doctors have told us…

I'll see you over at the forum

Good Luck being less British!

The Mysterious World of Steve Ward

Questionable;  Adjective (Doubtful, Uncertain)

Synonyms: ambiguous, apocryphal, arguable, contingent, controversial, controvertible, cryptic, debatable, disputable, dubious, dubitable, enigmatic, equivocal, fishy, hard to believe, hypothetical, iffy, indecisive, indefinite, indeterminate, moot, mysterious, obscure, occult, open to doubt, open to question, oracular, paradoxical, problematic, problematical, provisional, shady, suspect, suspicious, unconfirmed, undefined, under advisement, under examination, unproven, unreliable, unsettled, vague

—————————————–

Firstly, an apology.

Time has escaped me and I have left my loyal community resultless – all of which I hope to correct in the following paragraphs. Suffice to say that my lack of need to vent my mind on the blog is perhaps an indicator of good news? Or it may just mean that I have been far too busy with an ever-increasing work schedule a now 6 month old baby and a well-known football management simulator.

So, where are we then?

When I last mailed I made it clear that I was expecting the result of my latest PET scan and I have, indeed got those results.  I didn’t rush to publish them as, once again they were questionable, doubtful, uncertain… As you can see I threw questionable into a thesaurus and the most exciting synonym I could find was “mysterious.” So allow me to explain the mysterious world of Steve Ward.

Basically, my post-radiotherapy PET scan was the same as the last 2 PET scans, meaning nothing has changed since July 2010 (in 8 months). In fact, they are better than the same; as my chest mass has continued to shrink without treatment (meaning my body is now working at absorbing the scar tissue) and my neck node has also continued to shrink by a mm or so. But the little light remains switched on, rumbling along at an indeterminate SUV (brightness) that could be infection, inflammation or, of course, residual disease. Again the PET report suggested a biopsy to confirm and again I was told the node was just too small to get to. This poxy light is what stands in the way of me being mysterious and being in remission (and as cool as the former sounds, I would much rather be the latter).

What does all of this mean?

Well, the Doctor would have expected one of 2 things to have happened following the radiotherapy, either for the light to have gone out completely or, given the 4 months off all treatment before the scan, to have grown in size and become brighter. Basically if it was Hodgkin’s it would either be dead or it must be so aggressive that it survived double chemo and then radio and it would have thrived under no treatment at all. But it did neither of those things. It just remained as it was a small lump of ambiguity, an iffy mass of dubiousness.

Looking back, the PET light up node in question has been a little bit fishy ever since scan 3 back in July as it didn’t follow the same pattern as the rest of my body. Allow me, if you will, to create a graph of my Hodgkin’s (bear with me):

This took longer than it should have

As you can see, the large chest mass was the danger area, it was… large and it didn’t completely respond to ABVD chemo. The tiny lung nodule and neck node responded well during the the first 2 cycles, reaching NED (No evidence of Disease) and MRU (mild residual uptake) respectively, whilst shrinking nicely. I was then switched to BEACOPP and the chest mass gave up too. After 4 cycles it was NED, the lung nodule remained NED but the neck node remained MRU (which led to the debate over treatment and the decision to continue BEACOPP). We completed the BEACOPP and scanned again, the chest mass shrunk and remained NED, the lung nodule was all but history (NED) but the neck nodule was MRU, leading to the decision to hit the radiotherapy. Bringing us to today, after the radiotherapy and I can only report more of the same.

So what does it all mean? Well, we aren’t sure. But my Doctor did say that he didn’t think this was Hodgkin’s. This is great news. He finds it hard to believe that Hodgkin’s would be able to do this, to be able to survive all the treatment, particularly the radiotherapy at such a low-level in such a small node. He has described the light on the scan as “small area of questionable significance.” He doesn’t want to treat it! So this is all good. In fact, the good Doctor is at pains to try to find another explanation other than Hodgkin’s for the light up. His current theorem is that it may be some kind of chronic inflammation as a result of the biopsy back in Feb 2010 – it is the biopsied node illuminating (and something that I have seen happen on the lymphoma forums, more than once). The fact that it has remained the same for so long backs this up and could actually imply that it has been NED since the 2nd scan way back in May 2010 (making my rads a pointless exercise) but meaning I would have been in full remission since July!

What Next?

Well, I can’t be the mysterious Steve Ward forever and we need to get to the bottom of this indefinite scanning. The medical team all agreed that no further treatment was required and that we would “watch and wait” to see what the node does (if anything). But what if that next scan was the same? Would I be in remission then or would it still be open to question? So as well as this, the Doctor took time out to speak to the hospital PET expert, hoping that she could give a concrete reason why this was not Hodgkin’s and we could relax. Unfortunately she could not, stating only that the scan was clearly indeterminate! She has, however, offered to attempt an Ultrasound guided Fine Needle Aspiration of the node.  This means I get hooked up to a machine similar to what Eve was on when we used to check on Emily in the womb and they use that to guide a very thin needle into the node to suck out a tissue sample to see what it is. My Doctor has said it is unlikely to yield any results, as they may not find the node and then they may not get a good sample, but that it is worth a shot if it can reveal reactive tissue. Otherwise the result would be inconclusive (not again) and then we would go back to the watch and wait approach and scan again in 4 to 6 months.

So, I await the stabbing and I await those results. But I am not too anxious. This is mainly because I am the mysterious Steve Ward and I will seek out doubtful \ questionable test results wherever I go. Oh and because I told you last time that I wasn’t going to have any more PET scans. I decided then that I was cancer free and I still feel cancer free. My bloods remain perfect, my symptoms remain gone and to be pretty frank, my neck just feels normal and unswollen a further month out of treatment (the scan was that long ago). I am still not “in remission” but I am all but there and what’s a few words between friends. I guess I’ll just have to save the big remission announcement for another time.

I’ll be back soon to discuss the ups and downs of ultrasound guided needle biopsies and how cancer is like a disastrous boat trip!

Steve

Auf Wiedersehen, PET

I had a big decision to make when coming up with the title of this blog… add a question mark or not?

I had another PET scan last week, in a wagon, we are trying to find out if the spot of residual uptake in my neck is gone after the Radiotherapy, if it remains the same (as it has done since the first after treatment scan in May) and so poses little threat, or if it had grown (or anything else has – for that matter). Depending on what it shows will determine if I am in remission, or if I require 2nd line treatment.

For those of you who don’t now (and why would you)? A PET scan is a Positron Emission Tomography scan and it is combined with a CT scan to diagnose and follow-up treatment to cancer patients. The scan involves being injected with radioactive sugar then waiting for an hour whilst the sugar moves around your body. You then go into the scanner for another hour whilst the CT scan matches up the areas where the sugar has gathered with your anatomy. This works because cancer cells are fast growing cells and metabolizing a lot faster than usual cells, requiring a lot more energy. So when sugar enters the bloodstream, the cancer absorbs it faster than anywhere else, creating hot spots of radioactivity. If you don’t have cancer then the sugar dissipates evenly around the body and you don’t seen the hotspots.

in this scan you can clearly see an active tumour in the patients chest

But here’s the thing… infections \ inflammation also like sugar as they also demonstrate hyper metabolic activity. In the picture above (which is not me) you can see the kidney’s lighting up a bit as the sugar is excreted. Reading a PET scan isn’t straightforward, especially when dealing with small, dim lights like mine. PET scans are notorious for false positive results with regards followup (of borderline cases).

Now, PET scanning is a dear do and so the NHS don’t actually own any of them. On my trial I went to a permanent facility in Preston (run by a private company for the NHS) so that the machine was consistent. It was a fancy place with comfy chairs and nice big preparation rooms. Now that I am off trial I get the local version which is, unbelievably, a scanner on the back o f a lorry.  Alliance medical run 4 of these lorry’s around the country offering the service to patients who may otherwise have to travel a long way for the scan. unfortunately this makes the facilities very temporary and portable. So I have to wait in a shed and then get injected in room that, at 6ft 3, I can’t completely lie down in. It’s also the same room where they keep the radioactive sugar! Then, if they are busy which they always are, you get shifted out of the tiny room half way through the rest period and go and lie down on the scanner itself – all whilst trying to relax! Oh and every time you move between rooms you have to squeeze past the technicians who run the scan, smiling and pretending everything is great when in actual fact you are cr*pping yourself!

I used to hate PET scanners, they have never been good to me and only ever confirmed that I am not quite yet in remission… thanks! in fact, I would have passed a bog standard CT scan already. But then a friend who is also in treatment for Hodgkin’s explained that to him the scanner is like an old friend who is just telling you the truth, even if you don’t want to hear it. The scanner is only showing what’s going on. It’s saying, “listen, mate, I know you’re looking good and all, but you may wanna check out your neck eh?“

Speaking of my friend who came up with the new theory that PET scans aren’t all evil, I want us all to send some good vibes to David down in Coventry (UK). Like me, David followed the RATHL trial and like me he failed the first PET scan (damn you PET… ) and was moved on the BEACOPP regime. unfortunately for Dave his next scan, though showing improvement, still hadn’t cleared the Hodge and so David has moved onto 2nd line treatment, autologous stem cell transplant. For Dave this means more chemo and a few stays in hospital. He still has a great chance of cure because his Lymphoma was responsive to chemo, but as it means super strong chemo it is getting rougher for him that it ever was for me so please, send him some love an hugs to get him through the down days, I know he will be reading this (if he can tear himself away from the PS3 game I have managed to get him hooked on… sorry about that Dave).

Although it pales in comparison to what Dave is going through, I am suffering from scan related anxiety (scanxiety), I spend days certain that the scan will show more hotspots, I rationalise, I feel better, then I cough… once… and the panic comes back. Previously this has manifested itself via itching (I kept thinking my itching had returned) or constant neck prodding, but this time I decided I couldn’t breathe very well and so my chest mass must be back. Is it back? Maybe, but it seems unlikely given the fact my chest has been clear since May and that I passed a pulmonary function test only a few weeks ago. Then I practically ran 2 miles to Anfield yesterday and then back after the match and forgot that I couldn’t breathe. I beat the anxiety and since then the breathing that had been troubling me for 3 or 4 days has been fine. Whatever next?

Well, whatever it is I must remain calm and in control. I can’t spend the rest of my life worrying about a cough and imagining symptoms that create worry so I guess this brings me back to my opening statement, add a question mark or not?  Am I brave enough to believe that I am finally in remission or do I waste time worrying that I am not?

I didn’t add the question mark.

Steve

Story of my Life (online)

It is now 1 year since I started this blog. A blog to update family and friends of my progress down what feels, at times, like a very unique road, a lost highway if you will. So, a year on, time for a recap:

It all started in 2009 with my itching problems and that along with some neck and back trouble took me to the GP to see if he could give me something for the pain. After blood on blood on blood test and many other investigations I get the bad news, I have lost life’s game of roulette and gotten myself Hodgkin’s Lymphoma, a type of blood cancer rather than a social disease. “Say it isn’t so“, I begged the Dr. But it was, talk about fear! I see a consultant, have a few more tests and then its time, in early March, to start the bad medicine. A couple of months later I get a PET scan, good but not great news and I up the ante with new chemo. This new chemo banned booze and left Merseyside, at times, feeling like a Dry County not great when it’s the middle of June and 99 in the shade, but if that’s what it takes, that’s what I’ll do. Months later and a scan shows better news and I carry on. Chemo over and with radiotherapy planned I am blessed with a new arrival, Emily, who was truly born to be my baby. A great cause to celebrate and a reason for Eve to get a new diamond ring. Several months and 3 weeks of radiotherapy later and it’s time to relax for a while and settle back into work.

At times it has been hard and I truly have been livin’ on a prayer. There are times when I have just wanted to runaway, times when I have felt so strong I could live for the next 100 years. Throughout this all my wife, Eve has stood by me; “I’ll be there for you” she said at the start and she was, always. She has been my superman tonight and everyday. I am never more grateful than when she is in these arms. Eve, I could make a living out of loving you!

So, that’s the story of my life, well my life as a blogger. It’s been no bed of roses but there have still been times when I have felt exactly the same as I used to, just older.  Can I be happy now? I think so. I still have another scan to go but I have to keep the faith in my medical team and my treatment. Maybe you could all save a prayer for me though in the next few weeks? With any luck I may just about come out on the right side of wrong. I still don’t know how things are going to turn out, but it’s my life and intend to make sure that I make a memory or two now the last year is behind me, I believe that  these days everyone has gotta live before you die.

Wow, it’s getting late here in the UK, never mind, I’ll sleep when I’m dead!

I Never say goodbye, so… Have a Nice Day!

365 days later

Welcome to 2011…

…and almost a year to the day that I began to suspect something was seriously wrong. I can’t remember the exact dates, but about now I was somewhere between an NHS 2 week rule referral (suspected cancer) and a very scary chest X-ray that showed either lymphoma or “something worse!” Now , a year on, things are very different. Instead of fear, I am filled with hope and instead of very negative thoughts, I am buoyed with positive ones and I am taking small steps towards getting over this whole Hodgkin’s Lymphoma episode!

C’mon you reds

*The following medical comments are based purely on my loosely cobbled together pieces of information and should not be considered fact. I hope I am making sense, but any heamatologists or other doctors reading (of which I know there are a few) should not spit their coffee all over the screen in disgust at any serious inaccuracies – do feel free to point them out though.

The most significant of these steps has been my first appointment with Dr. S. since September last year. At the appointment routine blood tests were taken and my counts checked. Now, blood tests and blood counts cannot diagnose Lymphoma in any way, shape or form, but they can provide an indicator of how things are getting on (from how my recovery is going to any markers that may need further investigation). The results were good, great in fact.

Reds: When first tested, back in 2009, the reds were on the way down at 13.5 (normal range is 13.6 – 18.0), which made my GP want to test further. At subsequent tests the number continued to decline. At diagnosis this mild anemia was explained by the Hodgkin’s. Chemo caused the numbers to drop even further, bottoming out at about 8 or 9 in August. Since then the number started to recover; at my last test a month or so out of chemo it was about 13 and now it’s rocking at 14.0 – the highest it has been in any tests I have had! This increase since chemo ended is a positive indicator that my body is not struggling with any nasty Hodge, certainly not to the extent of this time last year anyway.

Whites: At diagnosis my whites were massively elevated. My neutrophils (part of the white count) was clocking in at about double the norm (8.0 instead of 3.0 -5.0). This was because they were being drawn to the Hodgkin’s and trying to get it etc. During chemo they bombed. In august, after my last chemo (when I was a bit naughty and refused an injection) they hit 0.3 – whoops. Now they are checking in at 2.6! Proof that my marrow is working nicely but not too nicely like last time!

Platelets: Not really ever an issue, but were on the high side of normal (350k) at diagnosis – so much so that the national blood service wanted me to donate them. They bounced around the normal range during chemo and have now settled at about 150k which is right in the middle of normal!

So, not a proper test, but still a medical “pass” and another piece of evidence to point towards, at the very least, a clinical remission. I also passed a “node check” by the doc to – meaning that no suspect nodes could be felt by touch, whoop! Other positive signs include the lack of any itching (my pre-diagnosis nemesis) a lack of fatigue or night sweats too (classic Hodgkin’s symptoms). On the food and drink front I have been checking, regularly, that I have no pain when drinking alcohol and I have not been losing any weight. In fact that situation has been going in the opposite direction, great news to indicate that I am not wasting resources feeding any Hodgkin’s, but not so great news for the waist band. Finally and in an attempt to rectify the previous point, I have managed to start playing 5-a-side football again (not very well, but it’s a start). Oh and I am fully back in work and have resumed full responsibilities there – so my damage can’t be too brained!

All in all, a promising start to the new year and great news considering I am almost 6 months out of chemo.

Baby Steps

BUT, we’re not there yet. I am still fighting some of the lingering side effects of radiotherapy (mainly stiff neck \ shoulder muscles and missing half a beard). I also have a CT scan coming up in a few months (no more nasty PET scans unless something looks suspicious) and if I can get past that one without any increase in the size of anything (other than my stomach) then I think I can declare myself in some kind of remission, that would be a monumentous day. If I do get past that one, I am scan free for another 9 months and then forever, but let’s slow down, we’re taking baby steps here not giant leaps.

Looking Good

So, that’s the current situation. 2011 going well so far and things may finally be looking up for good ol’ Steve Ward! So much so, that I think I may even dare show you all a current picture. Now, I’m not about to share any “before and after” images, but those of you who saw me back in August my be pleased to see that the look wasn’t permanent:

As you can see, Emily is really coming on too and has been keeping me on my toes since October anyway. She makes sure that I am not dwelling on the past and enables me to forget all about last year! In the last few days she has learnt (thanks Grandma & Grandad) how to roll from her back to her front, but not the other way. This means she will roll over as soon as she is put down, lay there on her tummy for 5 minutes then cry because she doesn’t like it. Roll her back and she repeats the process, doh! Eve is now trying to teach her the return trip, fingers crossed.

Thanks for reading, sorry for the long gap in updating the blog but to be fair, nothing has been happening.

I’ll write again much sooner… Steve.

In summary

Hello again, has it been 3 weeks? Wow. Doesn’t time fly?

There is a lot to cover today (get yourself a cuppa) and so I am splitting this entry into sections:

1.Radiotherapy… so what?

So, 3 weeks on and I have completed my Radiotherapy. It was… easy.  Sorry to be controversial or upset anyone who finds this that may have had a hard time on it, but it was nothing, a walk in the park.  The worst thing was the cost in petrol and tunnel fees (presumably a small price to pay given the aim of the treatment). I thought the staff at Clatterbridge were great, I enjoyed my daily banter with the radiographers. I was genuinely interested in the tech involved and learned a few bits, I enjoyed the 30 mile round trip as I was able to sing along to plenty of Bon Jovi. I have experienced very few side effects (so far). Compared to Chemo it was pleasurable, then again, I think most things are pleasurable compared to that!

To go over the side effects, I have got some now pretty pink skin on my chest\neck\face that is getting a little sorer each day (and will continue too). It feels exactly as when you have had a bad shave (you know, with a blunt razor or with rubbish shave gel). Its warm like when you have sun burn, but it’s not like bad sun burn.  It’s a bit annoying, but for the most part easily ignored. My neck is a little stiff as various tissues and muscle groups have probably swelled slightly in the radiation field, but not enough to stop me doing anything (like tomorrow’s golf lesson) and I am not growing beard in the radiation field (not a problem as long as I keep the other side shaved so that I match – This will return). Oh and I am very tired, but this may be related to the baby rather than the rads, who knows?!?

This brings me onto another big anti-climax.  Radiotherapy doesn’t involve any radiation (in the sense that most commonal garden people imagine radiation). It’s not nuclear. There is no atomic reactor, there is no green beam of light there is no danger of melt down, there aren’t even any radioactive signs as nothing is radioactive. What a jip! Instead of radioactive beams I have actually been treated by a particle accelerator! The machine spins up loads of protons or electrons (depending on the strength of treatment required) and fires them, at speed, at me. As they pass through me they disrupt DNA and shizzle, working a bit like chemo to stop rapidly growing \ dividing cells. This is still quite cool as it makes me a bit like the large hadron collider (less of the large eh?) without the black holes and the higgs-boson particle (can’t wait to see how many scientists stumble across this site on google, I bet this wasn’t what the expected to see)! There is one machine in the hospital that can fire bona-fide radiation, but that is used for deep bone cancers.

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2.What happens next?

In short, I dunnno!  In the words of Bono “I still haven’t found what I’m looking for” in my case the hallowed land of “remission.” As much as I’d like to be able to say I am now in remission, I can’t as I haven’t had a completely clean PET scan and maybe I never will as I may not be getting any more of them. I have been in “Excellent partial remission” since April \ May from the ABVD and things have only got better since then. The light in my neck has been consistent and this is a key point in my favour.  If you remember, it has been MRU (residual uptake) since that scan in April. It has produced the same numbers since then, not getting worse or better but crucially HAS shrunken even further in size, to the point where it is now normal size.  To quote my radiation consultant “a few years ago you would have been considered in complete remission.” From what I have seen on the web and from speaking to nurses \ doctors it seems unlikely that anything active would have stayed so consistent, it doesn’t make sense, it would have increased in activity if not size, certainly not shrunk. The latest PET report from September did not say it WAS Lymphoma, but couldn’t say it wasn’t and no one can biopsy a 1cm node. It’s that element of doubt that brought me to radiotherapy and as far as I am concerned any doubt has now been crushed!

I can’t say I am in remission, but I am,as far as I am concerned, as near as damn it.

The next steps are to see the Hematologist at the end of Jan (woo hoo, no more Dr’s in 2010) and take it from there. Standard follow-up is to be scanned (CT) every 3 months for the first year, looking for anything changing in size. If I get through a year then it steps back to every 6 months. If I get through 3 or 4 years it’s every year and then, in a small 5 years time, I can consider myself cured. Statistically I am certainly not out of the woods yet.  The relapse rate for the Hodge is very small, remember cure rates are now approaching 90%, but if I were to relapse it would most likely be between 1 year and 18 months of starting treatment, after then the relapse rates decline until the 2\3 year mark where they pretty much level off at a very small percentage.

I have decided to face this threat by pretty much ignoring it. This is not a “head in the sand approach,” but  I am going to keep the faith in my doctors to pick up any signs of relapse in my scans \ blood work, let them do what they get paid for and look after me. I don’t want to spend any more of my time worrying about things that, frankly, I have no control over. I have too many important things to do. I have my daughter to look after and need to start paying back many of the good deeds that people (most of all my wife, Eve) have given to me. If I spend all my time even considering the threat of a relapse then it is time I could have spent watching Emily smile, making Eve a brew, catching up with Mum & Dad, fixing printers for Pat & Mick or inviting Em & Shaun round for dinner (god knows they made us enough of them).

So what happens next, maybe I do know, I get my life back.  My boss has already helped make things more normal by starting to fill my calendar with meeting requests and deadlines for work (had forgotten what those were). Wednesday sees a golf lesson. Thursday sees me go out (that’s right, out) to celebrate my Brother in Law’s birthday. Friday is a trip to Manchester to watch “We Will Rock You” which was a birthday gift from Eve. Then Sunday is our gang’s annual Xmas do. This time though there are 3 new additions to the group which means we will have to curb our drinking (or have a designated driver \ babysitter). Next Friday its my work Xmas do and this will be the first time I have overindulged in alcohol since, a very long time ago. Then another LFC match (racking them up since chemo finished). Then it’s Christmas in Liverpool and a VERY happy new year in Doncaster (I will be quite pleased to see the back of 2010 I tell you). On from there early highlights for 2011 include a weekend in the lakes with the baby and the big Bon Jovi concert in June. Oh a plenty of firsts for Emily, steps, words, meals, you name it!

Roll on the rest of my life!

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3. The Others

I have tried to keep this blog positive. I have tried not to dwell on the “wrong side” of the percentages and not to worry about what happens if I am on that side. So far, I am not. So far I am in first line therapy and I have no reason whatsoever to believe that I will need any further treatment. But there are people who make up the 10%, people who don’t benefit from the fact that Hodgkin’s is the “Good” cancer.

I’m not trying to bring us all down here, but I want my friends who follow this blog to understand what I have faced and will continue to worry about facing and I want people who stumble across my ramblings to get a sense of perspective and a sense of understanding of what all of us “Hodge Warriors” have to go through.

Throughout my treatment I have visited the Lymphoma forums, a US support group. This site has been incredibly valuable as it has enabled me to talk to and read about hundreds of people going through exactly the same thing as me (Many of them with blogs too, who i shall link to on the right hand side of the screen if you want to read on). The blog represents the stats pretty well. Most people who pass through it post for a while, finish treatment and leave, putting the Lymphoma behind them. A very small population return when the Hodge does, posting about their 2nd line treatment and again many then leave the forum and the Lymphoma as a distant memory. Then there are the true warriors. A very small, very select group who have failed 2nd line treatment and find themselves bouncing around the country (the US) participating in clinical trials to stem the disease and managing the cancer as a chronic condition rather than a curable illness. These guys continue to post on the site, continue to help newcomers like myself and share their vast experience with us all. In some cases we see remarkable achievements. A girl called Bekah, who has been fighting this thing since 2006, has managed to reach a remission after 4 years of trying and many, many chemo’s. How happy we all for her! A guy called Chris, who is just coming towards the end of another trial as his disease has stopped responding, has been fighting since a long time ago but he is focused on the next trial he can get on, no worries.  Duane, who has a great blog, who has relapsed 3 times and is now in remission following an allogeneic transplant (donor). He is now somewhere around the world living it up!

But then there are the few who don’t make it. Recently there have been some bad times on the forum. Mike and Brian have succumbed to the disease after many years of fighting via either their treatment toxicities or the Lymphoma itself. Then over the last few days we have heard about Jennifer who has also passed away after a long fight. In my time on the forum I also remember Mario and Jeremey who had to give up the fight. They join many others who would have to disagree with the Dr who probably told them that “If you’re gonna get cancer, this is the one to get.”

Don’t take this the wrong way. i am not feeling sorry for myself or worrying or trying to make you all think “Wow, what must Steve be going through.” What I want to share is that I am not alone. There are other people in my boat, other people in a worse position. It’s NOT all about me. So if you have been following my blog thinking of me then great, but please think of everyone else too.  Think of the many who are cured and had to go through a rough patch, but remember the few who are still fighting or didn’t make it.

If you are a fellow Hodger who has come by my site via google then first of all, don’t worry, the cases above are few and far between and the stats you read about are true. The odds are highly stacked in our favour, you WILL beat this and you CAN get through the treatment, no matter how tough it looks. If you need support I advise you to join the forum. You will get more help and support than any hospital can provide and find many more answers too. We’re not medical professionals but we are a very opinionated group! Personally, I am a modest poster, but you may see me pop up from time to time.

4. See You Next Year

The reason for the incredibly long post now, is because I don’t expect to post much more on here until next year. This is purely because I am not going to have anything to say until then as I am not having any follow-up appointments until then. So, if you managed to get this far down the blog without giving up, have a great Christmas, have a wonderful new year, I know I will!

On the Radio(therapy)

OK, you’ll have to forgive me as I am a day behind with the news (babies and back to work eating up all of my time) but yesterday (Wednesday) I started my 15 day course of radiotherapy. Before that happened though, I should let you know a little bit about how I got there from my last post and the trip to the mould room.

It all began last week with a planning meeting. Here I got to try on my new mask for the first time and make sure it fitted. It did! They then took me into the simulator. This is a machine very similar to the radiotherapy machine itself, but it only takes x-rays. In the room there are nice “medical green” lasers that they line up with your neck. They then use the cross hair from the x-ray and these laser points to map out the area to be zapped. The x-rays are checked to see what physical structures are “in the way” and the field widened \ narrowed \ lengthened \ shortened to the specifications of the specialist consultant doc. Then it gets all “arts and crafts” again as the technician draws on a few dotted lines with a marker pen, and not even a ruler, which will then be used to give me “ultimate sun burn.” The result is a mask, all marked up, as below. This mask is to become my new mate as I will wear it day in, day out for the next 15 13 days.

Not quite the mask of Tutankhamun but you get the idea

 

Next was a CT scan to get the contours of my neck \ chest. This is important to make sure that I get an even distribution of radiation through the thicker and thinner parts of my neck \ chest, more on that later. But it meant another 30 minutes in “the mask.”

So then it was on to day one of the radiotherapy. The worst part of the whole thing is the travel. Its about a 45 minute drive from home \ work to Clatterbridge via a nice toll road at £1.40 a pop. Then you have to queue for the car park and get in there in time for your appointment. Oh, then don’t forget the obligatory NHS delays, yesterday it was about an hour, today 30 minutes. Getting there aside, the actual daily procedure is very quick and very straightforward. I get in the machine room, shout my date of birth out (not a very secure identity test, anyone could pretend to be me and get free radiation) then hop on the table. Mask goes on, bed gets moved into position then the technicians start speaking what appears to be a foreign language to each other whilst making minor adjustments to the table and lining me up with more nice green laser beams. Then they leave the room and the machine kicks in.

The Big Boy (or Machine V6-1 as it is commonly known)

 

The treatment comes out of the circular bit on the top that is hanging over. What you don’t get to see, but I do, is a big square area with a cross hair on it, this is the sniper’s gun sight. This area is lined up, but then the “magic” happens. Loads of lead “fingers” move into shot from each side of the square, blocking out the radiation and leaving a hole open that matches the treatment area. This hole is very precise and built using the CT scan mentioned above. I get zapped and the fingers move again to create a shape that looks like the top of my shoulder and side of my neck. I get zapped again. This is to make sure the deeper tissue gets the same dose as the rest of me. Finally the whole damn machine rotates 180 degrees so that the circular bit it underneath me, the lead fingers rearrange and the same area gets zapped the same 2 times from underneath. This all takes about 5 minutes and I don’t feel a thing, it’s very anti-climactic. I get let out of the mask and then off I pop, back through the tunnel to home \ work.

The total amount of radiation I am getting is 30 gray (gy) over 15 fractions (simply the days they are dividing it into). This is good as the technician told me that this means the intent is to cure! The other way Hodgkin’s can be treated is 20gy over 5 fractions, but this is only to relieve symptoms. The area they are getting encompasses all the lymph nodes in my neck, from under my jaw to my collar-bone. This is mainly for prophylactic reasons, to make sure that if the lit up node was anything and if any cells from the lit up node (that probably wasn’t anything but just in case) had moved along the node chain, they would be got as well. The good news is that my spine is not in the field, neither is my throat (or the important bits anyway) and neither is my thyroid (a lot of hodeg patients get zapped via the thyroid and end up on thyroxin in a few years time). The side effects? Sore skin, maybe a sore throat and a few out-of-pocket toll road expenses. On this plus side I am listening to plenty of Bon Jovi on iPhone as I travel.

So, that’s it. I shall check in again before or around the end of the rads to let you know if I grew a new head, but until then its as above, over an over again. Tie that in with a full-time return to work and a colicky baby and you have me for the next 3 weeks.

Oh and I just noticed a have had almost 11,000 hits on my blog and I am delighted to say that someone got here by googling “livin’ on a prayer,” wow! Maybe I should start advertising!

Cheers