Blood, Night Sweats and Careers – Some Post-Hodge Reflections

Its 2018 – or as I prefer to say New Year, New … Lymphocytes.

As I write this on a rather chilly January morning, the Christmas decorations have long been put away but the overeating continues – some high calorie habits are harder to break! However, my neutropenic routine got well and truly obliterated over the festive period as I munched my way through leftover Turkey, Smoked Salmon and Cheeseboards for at least around 10+ days as expected. And, after the success of my Teenage Cancer Trust Nandos and Panto outing to Liverpool, I couldn’t resist the opportunity to indulge in yet more public transport and crowds, with a last-minute trip down to London to see in the New Year. This included, but was not limited to, surrounding myself with the tourists and dust collecting dinosaur skeletons at the Natural History Museum, making several hops on the Tube, a gathering in Tooting and a wander down Oxford Street before making my way back north.

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One of the many landmark moments of January – finally finishing the last of the tablets! I had been longing for the time when I would no longer be able to identify the days of the week by whether or not it was 2 tablets or 1! My rattling days are over. 

In other news, I was also happy to say that I finally graduated from Durham, only around 7 months late. Delaying till January certainly had its advantages besides the obvious of being chemo and cancer free! Being an undergraduate at a large postgraduate affair meant special treatment as I was able to attend not one but two drinks receptions with nibbles, including one hosted in University College aka. Durham Castle (though I must admit, here the emphasis was definitely on liquid refreshments as the food offering was nothing compared to the extensive canapes of the night before up at my college – evidently, they had blown the budget on the room booking!). I had the privilege of being the first person to graduate at my ceremony (a decent claim though this included added pressure of having no-one to follow in terms of knowing which direction to exit the stage). Also, I was able to take advantage of the opportunity for some light conversation with the College Principal and Head of Modern Languages who at least pretended they knew who I was. To top it all, my rather fetching fur trimmed gown very much stood out against the fairly plain hoods of the MA students. After 3 days of excessive dining, drinking (of the soft variety!), catch-ups and with a little bit of cultural visits squeezed in, it was time to depart Durham for the last time (TBC), happy to have finally brought some closure to my university career and mark an end to what was certainly a rather different final year.

Graduation, 12th January 2018 – It was so lovely to swap a hospital gown for something ever so slightly more formal!

So, what is on the cards now as everyone keeps asking, well … an exotic holiday for starters as it is now less than 2 weeks before we jet off for the Far East – travel vaccines have been completed, hefty insurance premium forked out, itinerary planning on-going, packing to be completed at some point hopefully pre-departure. Before that though, I have the slightly daunting prospect of, dare I say it, attending an assessment centre for the Wellcome Trust whom I slipped off an application to many moons ago. On an ever so slightly different future related train of thought, I have also been fortunate enough to receive a couple of invitations to interview for a potential MA in, wait for it … ahhm, Social Work – gasp! Again, on a completely well-thought out whim (if any prospective universities or employers are reading this) and after some deliberation with my own contacts, I came to the conclusion that I had nothing to lose and that potentially the best way to find out if it’s a job for me is to actually go through the application process! So, we will see where this leads and I’m quite content with the thought that I have absolutely no clue where or what I might be doing in 8 to 12 months’ time … In the meantime, I continue to be a loyal Young Reviewer for Macmillan, Online Champion for CLIC Sargent and general ‘doer’ for all things TYA as I keep my fingers in many charity pies.

Now for the soppy stuff so grab the multipack of Kleenex and crack open the sharing size box of Maltesers … It would seem an apt time, as I wait for my battered chicken dippers to heat up, to write just a few well-meaning words to reflect on a frankly Hodge-podge year I guess. It was about this time just over 12 months ago that I first realised something was a bit up … my temperature and a gland at the top of my neck! And as you’re all well aware, after 3 and a bit months of fumbling my way through the NHS I finally got some answers and settled myself in for the complimentary rollercoaster that is 6 cycles of chemo. Yes, it was a weird way to spend my 2017 and a slightly more unique chain of events to mark finishing 4 years of my undergraduate degree. It depends on how you look at it doesn’t it – Yes, I could see 2017 as a ‘Let’s forget about that one’ / A write-off, or, As the year I finished my degree, got myself into (and out of) some very strange situations (attending an exclusive wig-fitting in Eastern Cheshire, posed around Heaton Park in with 2 vampires and a witch in mid-August, to name but a few), beat cancer and discovered the merits of frozen Doner meat.

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Speaking of which … Given the evident remarkable return of head hair, I’m afraid to say that the wig has stayed firmly on someone else’s head in recent times! However, that is not to say that I do not put it to good use … and I am also known to still slip it on for novelty occasions.   

It’s all that glass half-full, half-empty, glass sprung a leak, glass you’ve just dropped on the floor and it smashed so you’re having to sweep up the remnants with a dust pan and brush whilst tap dancing around the kitchen because you’ve got no shoes on … yeah all of that usual tat!

I’m still not entirely sure where I lie on this scale of things so take the following with a decent shake of salt (and Pepper): -I don’t think I’ll ever be one of those people in years to come who will say, ‘Cancer made me a better person’ or similar. No, cancer made me infection-prone/wrecked/nauseous/virtually bald/pretty unwell, it semi-ruined my final term of uni when I should have been spending sleepless nights stressing and worst of all it has meant that I shall never be able to eat Jam Roly-Poly or Country Vegetable Soup again! Yes, I did make the most of it (if I can say that) and have met some interesting and amazing characters along the way and am extremely grateful for all the opportunities I’ve been able to take advantage of and are still to come, but still, I think I would have been fairly happy to do the usual and spend a boring summer contemplating what an earth I was going to do post-uni and looking forward to an undetermined amount of time on the dole (or similar). Cancer is a fight and everyone’s fight is different – the way I see it, every time you flick on the TV to watch yet another hour of Homes Under The Hammer because you’re too exhausted to do anything else, every time you open up Netflix and binge-watch another box set, every time you settle into your Spotify playlist as you sit tight to let your radioactive tracer absorb before your PET scan and in particular every time you grit your teeth as the (fabulous) nurses say ‘Sharp scratch’ as they attempt to cannulate you for the ? th time … Yeah, I think that is what I’d call fighting cancer! And, I’m incredibly lucky that (fingers crossed) I can call my brush with blood cancer, a minor blip on my NHS CV. Passionate mini rant over. And just some closing points and questions I know you’ve been waiting to get answers for:

  • Am I an inspiration? Yes, but I was already one long before I got cancer
  • Will I do something incredible with my life as a cancer survivor? Most probably, though at which leading supermarket I shall be found stacking shelves remains anyone’s guess!
  • Has cancer changed me? Yes, goes without saying. I have a much shorter haircut now than I would normally sport and I also get to carry around a bright red medical alert card which I’m hoping should double as a student discount in times of need
  • I am still no further forward with what makes the ‘Haematology-Oncology’ department a Suite – my only thoughts are that it must be to do with the soft furnishings and reclining chairs!

There we go, I think I’ll stop there as I sincerely hope I have achieved my principal aim of stepping through the Haem-Onc doors so you don’t have to. And, as I see it, having completed one of the toughest and most competitive graduate schemes out there – a 6 month contract with ABVD. I fear that this will probably be my final attempt at blog-posting. I know, I know … but otherwise I’d really need to do a title change as Neither ABVD, Nor the Hodge, Just Me really doesn’t have the same ring to it!

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And we’re off – With an All Clear, My ‘independence’ coat and Neutrophils of, I suspect, at least 3. something, the world is my oyster … Now, how about those chicken dippers and a spot of daytime TV!

So, I thank you for your loyal reading/Facebook liking/Thoughts/Prayers/General well-wishing and let this be not an Au Revoir but more an A Plus dans le Bus …

x

Bargain Buckets, Breaking the Rules and Becoming a Bit More ‘normal’ … at least in BMI terms!

Now apologies if this is the first time of hearing (and no apologies to those of you who already found out when news first leaked some 2 weeks ago) BUT I’m All Clear/In Complete Remission/Had a Full Metabolic Response/No Glow/No Longer Haematologically Challenged/A Lot Less Lumpy … whatever you want to call it!!!!!!!

Yes, I received the good news as hoped for at a little after 9:20 on Tuesday 5th December. Tension did rise when the first thing I was asked on meeting my consultant again was ‘Any lumps? Any night sweats? Any weight loss?’ and I began to think, ‘Wait, Should I have?’. The major struggle of the appointment was trying to work out how to bring up my scan images on the computer so we could do a before and after (a bit like they do on DIY SOS apart from over a rather longer timescale although both do involve significant internal and external refurb aka. Tumour Lysis). Although my consultant may be talented in the Haematology sector, his IT skills are definitely lacking – he cured me so I will just about let him off on this one! Almost as exciting was to hear my Neutrophil levels were at the record high of 2.0 meaning that my risk of infection is now negligible – In layman’s terms, Goodbye incessant sterilising and Hello unpeeled vegetables and soft cheese. Thank goodness, because we were struggling to comprehend how it was humanly possible to do Christmas without consuming leftovers! To mark the occasion, we stopped for a coffee and unwrapped cake in the hospital café though I still couldn’t resist a quick squelch of the alcohol gel – some habits will be hard to break. The manic day continued with a brief return home to do some travel insurance investigations (read on for further details!) before we headed back out for a celebratory lunch at, where else but, KFC. 8 months of takeaway avoidance were broken in the form of a suitably greasy bargain bucket and accompanying sides.

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Easing myself into post-Hodge existence. Not as risky as it looks as apparently KFC has a 5 rating for food hygiene – alcohol gel on hand though for peace of mind!

Next stop: Back to the hospital, this time for my long awaited post-chemo appointment with the nurses. Nothing much to report here – I did most of the talking! More a formality than anything else. Onwards, into town to return to the travel agent for some rather exciting booking – we certainly don’t hang about – plans are now official for our late January Far Eastern adventure to go and stay with one of my dad’s cousins over in Hong Kong and then stop off on the way back in Vietnam (I won’t comment any further on this one due to risk of inducing extreme jealousy)!! Afterwards, there was barely enough time to pack the bags for our first exotic short break to … the Wild West … of Ireland!

I was not treated to a lie-in the next day which I probably could have done with given the rather hectic Tuesday. Instead we were up at 6am to head for the boat to start our long-awaited holiday. After a bit of a choppy crossing and traffic jams driving through Dublin, we stopped off for some lunch at Newbridge before continuing on to somewhere in East Clare where we had booked to stay a couple of nights. There was much reason in decision making here –firstly, unaware of how neutropenically challenged I would be, we had thought it best to self-cater and had therefore had to choose carefully over somewhere with easy access to a vegetable peeler –secondly, in a bizarre turn of events, it had turned out cheaper to book accommodation and the ferry than the ferry crossing on its own so, as we saw it, the only catch was that you had to spend two nights in the middle of nowhere in darkest December to qualify!

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First use of public transport since March – hoping the sea breeze will do me some good!

Apart from the torrential rain on arrival, all was fine in our perfectly appointed cottage and the heating was turned on full blast for our arrival –What more do you need! Best of all, as it was Wednesday night we had come just in time for one of the fortnightly chauffeured outings to a local pub in, ahhm, Feakle! It was here that I finally succumbed to an alcoholic beverage whilst enjoying the traditional Irish music in the company of a rather tipsy American contingent on holiday from Massachusetts who had so loved their first visit to ‘Pepper’s Bar’ that they couldn’t resist coming again.

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A sample of Feakle!! This marked the end of my rather lengthy Go Sober For October.  

The next morning we set off to investigate the Cliffs of Moher, choosing probably the windiest day of the year with gusts of c. at least 80km/h. Therefore, appreciation of the views became more a case of survival of the most-grounded as we struggled to stay upright! Retreating to the car we continued on the tourist trail to sample some salmon at the Burren Smokehouse and then went off-piste to attempt to track down the distinctive Burren rocky landscape which led to some late afternoon Winter sunshine photography in a lay-by off a single track road. A quick squint at the Googlemap and I was rather pleased/surprised to see that we were apparently only a mile down the road from the ‘Father Ted house’ and so had no excuses but to continue our pilgrimage. Photos at rickety gate taken, we finished off the day calling into friends for dinner in Limerick. Sun shining on Friday, we checked out and went for a scenic drive around Lough Derg before heading down to the family farm that my dad had spent many a summer at a few moons ago! Tour of fields and cattle complete as well as a gander around the time capsule of a farmhouse and outbuildings, we hit the trail back up to Dublin to stay with my Auntie and Uncle. After a couple of days doing the tourist thing in Phoenix Park and Dublin Castle, we were back on the boat on Sunday evening and arrived home to be greeted with some significant snow covering! All in all, a lovely little jaunt and I was pleased on reflection to see how many neutropenic diet guidelines I had managed to break in the one go (Public Transport, albeit a pretty empty boat – Done, Soup which had probably been reheated –Yep, Smoked salmon, Uncovered free samples kept OUTDOORS possibly involving unpasteurised cheese, Crowded Pub, Prawns – Tick).

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One of the holiday snaps from out West! 

Since then, I have been kept occupied by avoiding doing Christmas shopping as well as making a flying visit north of the border to visit family! And as we speak, I am just in the process of doing a spot of brainstorming pre-CLIC Sargent meeting tomorrow as well as getting over the excitement of my first of the discharges – today from the dietician as my recent heavy consumption of fried goods has resulted in me tipping over the metaphoric BMI scales into the bottom end of Normal. I did confess to the Mocha Compacts being firmly off the menu at the moment but thankfully the fact that I have evidently very much taken to eating solids meant that no eyebrows were raised (Even though I have the capacity to do so!). Nevertheless, I still have the issue of x number of high calories shakes weighing down the fridge and so a twisted version of Compact Egg Nog may well be on the cards over the festive period!

Am I ok to leave it there? Yeah I think so as I am in need of 40 winks before my grand outing to the Merseyside Teenage Cancer Trust Peer Support Nandos & Panto – luckily for everyone involved it is a professional panto and so I am not required to tread the boards to ensure my keep (This was nearly not on the cards as for a time I had actually been placed on the waiting list for said outing! – next time I shall need to adopt the same tactics as those you would use for Ticketmaster concert releases and be ready to respond to the text the second it comes in having put up a tent and not slept the night before. Lesson learnt!!!). Anyway, I hope you don’t mind but I am planning not to host any blogging office hours over the festive season but some apt reflections may be in store as my rather ‘different’ 2017 comes to a close!

Just leaves me to say, I wish my loyal readership a Merry Christmas and a Happy (& Hodge Free) New Year particularly to the 2 people from Mauritius who have tuned in at some point! Now, if you’ll excuse me, time to go in search of some snacks well beyond their use-by-date …

A plus! x

Half-Lives, Hazardous Horses & Honing My Expertise

I’m well aware that I have slipped over my usual fortnightly update deadline and just to add insult to injury, this will probably be a slightly briefer update (I say briefer, I won’t know myself until I get to the end and add up those lines) as I’m hoping (fingers crossed) to be able to give a slightly more exciting update early next week ish. Read on for more info … 😉

Things have started to wind down on my ‘thrilling’ Hodge goings on as I’m slowly plodding through the awkward gap between finishing chemo some 7+ weeks ago and waiting to find out whether or not all the alopecia and ginger biscuits were worth it! Nevertheless, I was treated to a return visit from Jane to keep me on my toes and out of trouble as I hadn’t actually seen her since way back in September! The major focus of our chats, besides the obvious (dog adoption), was getting some insider gossip for another interview I had managed to line up. A different sort of one I must admit from my usual PR exploits – thanks to Tia (the community worker), I had been inspired to apply for a voluntary opportunity with CLIC Sargent, the role of ‘Online Community Champion’. Application diligently completed, I was rewarded with an invitation for an interview/informal chat with the people organising it from head office. I therefore, thought it was in my best interests to quiz Jane on everything CLIC/TYA support related to which she was very happy to disclose many a tip on her specialist subject! Given the direction of our conversation which also managed to encompass some careers advice, it came as only a little bit of a surprise to hear her turn around to me and say, whilst heading out the door, ‘Well, I suppose we’re ready to discharge you then!’ – I firmly took that as a complement of my psycho-social wellbeing and that I appear to be moving on in the TYA sense! However, this comes with its own challenges as the legitimate threat of being offloaded with a troublesome blue collie continues to grow …

To mark the end of that week, it was time to tick off another thing off the to do list as I made the pilgrimage up the Wirral back to Clatterbridge (for the 3rd time this month!) for my follow-up PET Scan! Successfully cannulated, Isotope injected and Playlist ready, all went by fairly swimmingly/statically I should say, though the expression third time lucky has little relevance for the 85 minute playing dead routine as this definitely doesn’t get any easier. Hopefully, it should strike more of a chord when it comes to the results!!! With a spring in our step as I rediscovered the joy of free-movement, we passed by the fruit & veg stand to do a spot of shopping and with another stamp on the Clatterbridge Cancer Centre Coffee Card (admittedly, the least popular loyalty scheme ever invented), we headed off home.

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Back here again and behind very closed doors, sampling the reclining chairs and ‘special’ flushing toilets: Hospitality, Nuclear Medicine department style! 

The fun did not stop there as on Friday, after a swift lunch to regain lost calories from my fasting, I had to settle in for my Skype chat with CLIC Sargent. Again, as expected – no stress here and I seemed to please them with my extensive knowledge of online safeguarding (!). Later on, I was pleased to receive confirmation that I had been successful and was now officially, one of the four new ‘Champions’ and would proudly be representing the North of England! Evidently my glowing personality had stood me in good stead … or was that the radiation I was emitting??? The rest of that day was mainly focused around frantically trying to calculate the half-life of Fludeoxyglucose (18F) to know when it was safe for me to cease using my own toilet!

Other free time has, as I’m sure you can imagine, mainly been filled with my new role! For those of you interested, and for those of you not, it involves working alongside the charity to help promote their online support services which principally involve an online forum where lots of young cancer patients can share experiences/advice etc. on education, work, appearance, mental health and everything in between, and so far I’ve really enjoyed working alongside the others to come up with answers and reaching out to those users who come online. Following an in-depth training session, we have also been moving on to focus on our major event of the next few months, A Community Champion take-over of the forum to run some Ask The Expert sessions throughout the first week of December – no pressure. It can be a bit daunting to be referred to as a so-called Expert but so long as questions are mainly focused on take-away alternatives, avoiding Stilton and hard boiling eggs, I should be absolutely fine!

When not peer-supporting, I can also be found behind the wheel, gracing the surrounding cul-de-sacs of Chester and on the hunt for roadkill to bring back for my dinner! I have to say, my first outing was challenging enough as I somehow managed to encounter 2 horses in a residential area, just my luck – well prepped, I remained calm before picking up speed, beeping the horn and rolling down my window to shout some expletives before moving back to my own side of the road!! Slowly but steadily, I seem to be making miniscule progress and should be ready to pass my test at some in the next decade. I firmly believe, that the best preparation I can do for my driving lessons is to avoid having a drink beforehand which should come naturally to me given the past 6 months + of going teetotal – things are therefore looking promising on this front! As well as this, the major preoccupation has been undertaking the momentous task given to me (and my mum) by my dad, of painting the inside of the house so the smell of funny chemicals/paints once more fills my nostrils. I’ve also begun to think about making some plans for the coming months for far-flung trips in the New Year and potential career directions (don’t quiz me on those) – though it will probably be a struggle given the amount of time I plan to spend in my local branch of KFC!

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The next steps on my road to recovery … 3 up the way on a rickety ladder! Unfortunately, the lighting does no favours for showing off my impressive all-round hair stubble! People would pay a fortune for that well manicured look – I got mine for free on the NHS!

And it wouldn’t be a blog post without some tale of my VIP adventures – the next on the horizon being yet another Fun-Run/Santa Dash thing over in Manchester on Sunday. As always with me, this did entail some complaining or one-sided negotiations as I prefer to call them over my arrival time as I was slightly perturbed by the advice to arrive from 8AM onwards – Hmm, I don’t think so. After some advice from my newly acquired Agent (Franki from Teenage Cancer Trust) who gave me some stern words to write in an email, the matter seems to have been resolved (not that I’ve had a response from them), but whatever happens, I shan’t stoop to the energy consuming lows of the setting up or running of a Bag Drop stand (as had previously been suggested by the Sports Company), not the Charity I hastily add before you go off to organise some huge boycott).

I suppose that’ll do for the moment, and yes, the Results Countdown is now upon us; Tuesday 5th December, a mere 3 or so days away. Those toes are definitely getting crossed. SO hopefully I should update you all in some form or another asap before I jet off to the wilds of Western Ireland for the rest of next week for some R&R!! Now, time to get back up that ladder then, I hear the paintbrushes calling me ….

A plus x

PS. How on earth have I managed to write 1200 words there on so very little, a real mystery #whatwriter’sblock?

A Spot of PR, Looking Not Too Bad and Feeling a Bit Better

I feel like it’s been a comparatively quiet couple of weeks since my last posting though that’s not too say I have been lazing around. Indeed, I’m sure it took me a good few days to scrub off the last of the Halloween face paint (the remnants of the Heaton Park extravaganza)!

Nevertheless, as so often is the case in these tight knit TYA/cancer circles, one publicity stunt merely led to another! Monday morning, I was up bright and early (10:00) to compose myself for a telephone interview. A job interview I hear you ask? No, no of course not, I’m not that employable (despite having survived the past 6 months ‘interning’ with ABVD and other Haem-Onc affiliates). Thankfully, this was with a PR company linked to Dreams Come True (again, a result of having ticked a box many chemo cycles ago saying I accepted engagement with the media!) and luckily for me it was on my specialist Mastermind subject of Hodgkin Lymphoma and my ‘dream’ trip, hopefully coming next year. Swatting up completed with only minor perspiration during the conversation, I was forwarded on the press release for their Christmas campaign. No evidence of any defamation of my character, I gave it my approval and settled down for a well-earned afternoon nap!

Wednesday, I once more found myself having a rather in-depth conversation over the dog and bone. This time with my newfound friends at the Lymphoma Association, something I had agreed to on a spur of the moment whilst at the Macmillan ‘do’ in Ellesmere Port! As I’m sure you can guess, this again played to my strengths and mainly focused on my diagnostic misadventures and any other bits of Hodge gossip and Neutropenic goings on I could piece together. Having done a spot of subtle naming and shaming of a certain medical practice in a university city in the northeast of England, we rounded off a rather lengthy conversation with the promise that my story would be published in the February addition of Lymphoma Matters (probably not available in all reputable booksellers), giving me plenty of time to revise and reflect before it went to print. After endless thanks for sharing my tale, we said our goodbyes and hung up (probably due to the risk of having racked up a rather monstrous phone bill and the potential that I may be sued for libel).

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Just wait for the ‘Spring’ addition cover story … Who am I kidding? I’ll end up with a third of the page spread somewhere by an advert for loft insulation!

With barely enough time to catch my breath (despite my lungs working at full efficiency, see previous posting!), come Thursday it was off up the Wirral to Clatterbridge, my TYA psycho-social home for the long-awaited landmark ‘TYA Male Look Good Feel Better Pilot Session’ (or words to that affect). This had been in the pipework for some blog time as I’m sure you might have gathered and was well suited to my ‘Wig Equality’ agenda etc. which I feel has become my raison d’être of recent months besides ABVD chemo. It was to be hosted in a bit of the cancer centre I had long been intrigued by, the Maggie’s Centre in the car park. I appreciate that I am doing the place a disservice to describe it in such terms but anyway, both me and my mum had spent some time (since late April) wondering what lay beyond the rather striking but subtle exterior. The idea behind Maggie’s is to provide a space outside of the clinical setting as a bit of a focal point for the more ‘holistic’ side of oncology and each centre is designed by a different leading architect. Therefore, the event was the opportunity to have a snoop inside and get some much-needed hair and makeup insider tips, killing two birds with the one hot stone so to speak, to quote the beauty treatment fashion. We arrived in good time and were greeted by a lovely volunteer who made me a complimentary brew whilst I took in the rather interesting surroundings, involving a lot of tasteful pine which, given that radiators were cranked up, was slightly reminiscent of a Nordic sauna apart from everyone being reassuringly fully clothed! I headed off to meet some of the other young guys who were also attending, said a brief hello to Franki from the Teenage Cancer Trust before being shown into the room for the session to begin. I must add that I had decided to go wigless on this occasion, thinking that this was one of the few opportunities where it was socially acceptable and no doubt encouraged to go ‘chemo bald’. However, I quickly realised that I had obviously missed the memo on the dress code as everyone else seemed to turn up with hair! Unperturbed, I settled in to what was a very interesting afternoon spent with makeup artists and volunteers from the charity as part of this ‘pioneering’ (to quote Franki) event. Everything was covered from appropriate moisturising, face washing, scrubbing, shaving and lots in between. The upside of me sporting my uncovered head was that I did get some extra attention with regards to scalp care and the low-down on hair growth. Similarly, choosing the seat next to one of the women that was leading the session meant that I was treated to a free facial massage whilst the rest of the group looked onwards to observe how to put the hints into practice. I have to admit, I did become ever so slightly nervous when she began to clean my face and was eagerly waiting to see how much dirt she would scrub off. Fortunately, I had remembered to shower that day so subsequent potential embarrassment and health hazards were avoided! Before you ask, yes I did even ask about the hair loss taboo of faking the eyebrows to which I was treated with a short tutorial on achieving the ‘natural’ look rather than the faux scouse brows of previous attempts. Most importantly, I came away with a haul of various posh potions which are very much appreciated, the downside of which means that to accommodate my new intensive skincare regime I’ll have to get into the habit of setting the alarm for soon after 5:30 AM if I’m to have any hope of achieving anything else besides an immaculate complexion! On a slightly more serious note, it was on the whole, a great opportunity to finally get to meet up with some other young people from in and around the Merseyside/Cheshire/North Wales area all at different stages of cancer treatment and has made me even more eager to begin attending the TCT peer support events in the not so distant future. On a bit of a high (from all the cosmetic fumes!!!), we headed over to the Macmillan info centre to get the dirt on all things travel insurance as I begin to plan my post chemo existence aka. spending money and doing exciting things. All in all, a very successful afternoon and I really hope to see the scheme take off nationwide!

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The delights of the goody bag. It makes such a difference to open up a paper bag and for it not to be filled with a bumper pack of Aciclovir and some anti-emetics! 

A fairly quiet weekend of catch-ups preceded a return trip to said ‘cancer haunt’ for a follow-up appointment with the TYA psychologist. As with my first visit some months ago, I went with no specific agenda and was merely keen to make use of the service/satisfy my self-centred urge to talk about myself for an hour to someone who was paid to listen (I wish that was a bad joke)!!! On a pragmatic note, it provided yet another opportunity to wander around the TARDIS like winding corridors and fish tanks of the CCC (The Clatterbridge Cancer Centre, just to clear that acronym up, as opposed to an off-shoot of a certain far right movement before you get the wrong end of a very long stick). Due to some double booking we actually ended up in the radiotherapy department, in a side room though rather than a treatment suite so exposure to radiation was limited. As a result, there was a slight case of mistaken identity when a woman knocked on the door only to claim on opening ‘You’re not my husband’ to which the psychologist reassured her that he was probably in room 7 up the stairs – I blame this on my slight lack of hair follicles and that, with my current pace of life, I must be able to confidently pull off the retired man persona! Following this false start, we cracked on to an in-depth stock-take on the usual topics of conversation diagnosis/chemo/cancer etc. I left with a potentially marginally clearer head, reassured that maybe my Mindfulness addiction was standing me in good stead (thank goodness as I have just begun another 30 day Headspace regime!) and able to at least partially tick off something on my ever growing ‘To-Do List’; Reflect on Cancer Experience so far!!!

On a side (or end) note (depending on my word count once I get round to checking it), the past couple of weeks have seen us move into the spreading the word/curiosity stage of Hodge recovery as my mum has proudly boasted of her response she received from THE Nick Clegg to a letter she wrote a few weeks back. As some of you may know, his son recently underwent treatment for Hodgkin’s which spurred his dad to take up the cause of campaigning for kinder chemo, something which I wholeheartedly support (in spite of any of his previous political ‘crimes’, Tuition Fees etc.!). So … a reply from his office to wish me well and thanking us for our backing was very much appreciated – one never knows where these things may lead to …

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Photographic evidence aka. Friends who were once in fairly high places! 

On my part, I have been bitten once again by the social media bug and now spend my time following other young people’s blogs etc., sharing their experiences with oncology and all that that entails. I suppose some people could think of nothing worse than taking this up as a hobby and perhaps I would have thought the same before becoming a member of the TYA cancer contingent. Nevertheless, it never fails to amaze and interest me to read about some pretty ordinary young people doing some pretty incredible stuff in some of the toughest of circumstances!

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I’m well aware of the lack of pictures of me in this instalment so I have included a small reference to my miraculous eyebrow growth and generally cheery demeanour – ‘#That indescribable happiness when you finally find those eyebrows you misplaced 6 months before’! Unfortunately, I can’t claim credit for the rest of my head hair. Though rest assured, that is also coming along a treat!!

 

I suspect that’s probably enough for the moment as I begin to feel, as I add up those lines and compare it to my calendar, that the Shakespeare play title Much Ado About Nothing seems quite relevant! So, until the next set of tales of my post-chemo meanderings …

A plus x

Bell Ringing, Breathing a Sigh of Relief and Braving Heaton Park!

The first couple of weeks of post-chemo life have felt remarkably similar to the previous six months of treatment except for the lack of nausea and extreme paleness, whose absence I am eternally grateful for. Indeed, as per usual, I still ended up at the hospital on the Tuesday but happily marked my progress by not parking in the Dialysis/Oncology car park and had a shorter stroll to the Respiratory department for my long awaited Pulmonary Function Test. The same routine as before – scuba diving without the tropical fish. In spite of me struggling to differentiate between the deceptively simple deep fast breath out and a longer equally deep exhalation (they remarkably both seemed to take about the same time), I was however, pleasantly informed/reassured that my lung function had improved since May! I appeared to have kept the Bleomycin toxicity at bay for the moment though I’m pretty convinced the fact that I had arrived in good time for the appointment and was therefore not having to leg it from car to lab, was as much to blame for my subsequent positive prognosis! A drop in to our friends at the Macmillan info centre completed our hospital trip this time. To make up for the welcome lack of AM medical contact, in the afternoon I was due back to the dentist for a check-up and complementary X-rays, including discussions of chemo food confessions which involved the dentist proudly exclaiming her instinctual craving for Ainsley Harriot Mushroom Soup and Crème Caramels – far more exciting than my pragmatic Cream Crackers and Ginger biscuits.

The end of the week brought my two week ‘chemoversary’ marking the day when I would have normally been called in for some cytotoxic treats. Unfortunately, my body seemed aware of this and I seemed to succumb to what I am diagnosing as ‘Phantom-Chemo’: I awoke after a bit of a lie-in feeling pretty shattered and as a result, fairly grumpy (a polite understatement) and not even a celebratory posh coffee out in the Cheshire countryside at a rather exclusive farm shop and festive gift barn seemed to lift me out of the dumps! I think this has taught me an important Hodge lesson: ‘normality’ doesn’t come back overnight with the end of chemo and I am now more accepting of the idea that it is only with finishing my treatment, that I can even get started on thinking about recovery! Admittedly, my temperament was improved with a brief catch-up with Franki on the Friday (from Clatterbridge TCT … a sneaky little TYA acronym for you there), the main purpose of which was a spot of … bell-ringing! For the uninitiated of you out there, this has become quite the fashion in chemo/radiotherapy circles and nowadays most Children’s Hospitals and Cancer centres have a specific bell installed to ring on finishing treatment (and no doubt with dual function for Health & Safety in case of a fire alarm failure). As lovely as the Countess hospital may be, they are lacking on the percussion front and so Franki, determined for me not to miss out, had promised to bring along her own personal ringing device. I initially wondered whether she would remember and was thinking I might just have to settle for two tries of the doorbell but I was relieved when I could hear jingling coming up the drive, long before she got to the doorstep.

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Yet another specialist skill to add to my growing CV!

That was not all the Lymphoma excitement I managed to sneak into Friday as our major adventure of the week took place that afternoon … The Macmillan Health & Wellbeing Event! As with everything I do these days, I was driven (really annoyingly and obsessively) with the motivation of the ‘Making a Point’, I know, such a show-off. Well aware that the average age (though willing to be proven wrong) of attendees would be around the 78 mark at least, I was determined to attend to represent the TYA contingent:  if planning had been carried out, the event should have been equally as appropriate for me as it was for some of the more mature clientele. On arrival, there was a small case of mistaken identity when the people on the door assumed it was my mum who was the invitee and that I was merely the supportive relative/carer (which I took as a complement –obviously with my hat and real hair wig I looked far too well!). Of course, this was met with the usual ‘You’re too young to be here’ type of comment (which, for reference, is the same story as whenever I used to go into a bar or attempt to buy Smirnoff Ice in Tesco … a distant memory now that I am a proud teetotaller, for the foreseeable future at least!!!). Point noted: evidently, I must remember to bring my ID next time I’m at an invite only cancer get together. Anyway, having made it past the vetting area we happened to stop by a stand for the lymphoma association – the one charity I’d somehow managed to not be involved with. We exchanged the usual pleasantries, ‘What stage is your cancer?’, ‘You’re an inspiration’ etc. before the lady asked myself and my mum if we wanted to pose next to the poster on the stand, a sort of lymphoma photo booth if you like, just without the additional dressing up accessories, unless you count my wig. She then insisted we were introduced to the man that ran the local lymphoma support group, where I had a bit of a faux-pas, having not realised he had offered a handshake which I ignored, being caught up describing the finer details of neutropenia. This led him to say ‘Oh, sorry. Yes, I know some people who are immunocompromised avoid shaking hands’. I eventually politely did the honours but out of sight proceeded to drench my hands in alcohol gel for fear that the man knew something I didn’t! We settled into our almost front row seats for the afternoon talks involving subjects as wide ranging as physical activity focused around chair exercises which will come in handy when I move into my own ‘home’, a presentation on dealing with fatigue which sent the majority of the audience to sleep, and, topped off with a complementary mindfulness session (of which I am a self-proclaimed addict of sorts with my Headspace routine) to the sound of a chorus of autumn birds and other fowl. After an attempt to gain a fifth + opinion on how long till I can have a bargain bucket (or similar food item from unsavoury source) with the dieticians (to no avail) and a debrief with a lady from Macmillan who I’d obviously caught the attention of, we headed on our way – I joke but it was another successful and informative outing from (goes without saying) another fab charity/my ‘employer’, so to speak!

Otherwise, it was a fairly quiet week which was much appreciated for once. On Wednesday, we were down to the station to pick up Catriona who was up for a long weekend so visits were scheduled to Cheshire Oaks and Broughton with the main intention of sourcing appropriate Halloween attire for the long-awaited Heaton Park Halloween Fun Run/Stroll/Walk taking place on the Sunday. Thursday saw a visit from Tia to discuss volunteering opportunities with CLIC Sargent and general TYA gossip. We were fortunate that, for once, chemo had not got in the way of a family celebration as we marked my Dad’s birthday on the Friday with an expedition over to Trentham near Stoke for a wander around the lake and shops. Plenty of ‘instagrammable’ photos taken (my new hobby as some of you may have gathered) and after a rather lengthy cross-country return trip to avoid the weekend traffic, Sean arrived as well later on that evening.

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A cheeky lakeside selfie – what perfect way to mark a family birthday not catered for by the NHS!

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Just swanning around Trentham!

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Some rather spooky photography on my part. Mind you, with clocks going back the days are getting shorter though perhaps not quite to ‘iPhone Noir’ proportions!

Saturday saw a spot of déjà vu and a risk of a repetitive strain injury with a further subsequent trip to Cheshire Oaks and then back to Delamere for an afternoon wander with coffee in our posh farm shop discovery of the previous week. Then of course, the day had arrived – so long in the planning ie. see previous postings for tales of the August photoshoot – we were up early to put on our tasteful ‘makeup’ and accessories. We then trundled along to our second home of Heaton Park for the fun run, semi-expecting to be the only ones to turn up. However, we were pleasantly surprised to be joined not only by some family friends but also some 500+ runners! Not taking part myself as it went slightly beyond my post-chemo fatigue remit, I was put to work starting off the race on the frontline, squeezing in a brief interview with Radio Tameside before handing out goody bags on the finishing line as the ‘star guest’! We are proud to say that every one of our party successfully made it around the course avoiding zombies and all sorts (apparently staffed by children from a local behaviour unit … or at least that’s what the lady told me when asking for an additional ten prize bags). We were rewarded with sandwiches, coffee and pies at the local café before returning back home for prescribed R&R and bubble baths. A huge thank you as per for all those who have been visiting the JustGiving page and donating those coppers and spreading the word. A link subtly posted below for those still interested in viewing the ‘totaliser’!

( https://www.justgiving.com/fundraising/the-boyd-family-run?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=The-Boyd-Family-Run&utm_campaign=pfp-share&utm_term=ak9dqDNX7 )

Heaton Park Halloween Run!

Team Boyd modelling the fetching Dreams Come True Summer/Autumn range with selected accessories! And is that a blue sky in the background …

Heaton Park Halloween Run!

Finally able to put my bald head to good use. Though, see what I mean about the ‘chemo’ eyes and loss of colour. 

Heaton Park Halloween Run!

Just another typical Sunday … starting off a fun-run! A nightmare in Heaton Park … I don’t know what’s scarier: the fancy dress or the size of that approaching rather un-neutropenic crowd!

Heaton Park Halloween Run!

Hard at work! No rest for the werewolf/skeleton/Hodge cross breeds!

A.O.B.: Just a small piece of exciting news here … my rapid hair growth. The bald look will not be hanging around for too much longer leading to concerns over whether or not I will truly be able to get value for money out of my wig (I may have to start wearing it in the shower and to bed!!).

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#nofilter #nohair … Not for much longer though!

I believe that is all to report on the Hodge front for now as I must get on to the difficult task of choosing appropriate Instagram filters that can do justice to my exceptional photography skills.

Hasta luego x

Traybakes, Temperature Tantrums and All The Trimmings

I begin this landmark BUMPER blog posting with a small flashback to my A Level English Literature days … In the words of the right honourable Charlotte Bronte of moors fame, ‘Reader, I finished chemo …’. However, much like that infamous novel, cycle 6 day 15 was also a bit of a gothic saga.

All had started so promisingly. My usual Tuesday appointment and check-in with the consultant went along swimmingly minus a small debate over whether or not he wanted to know if my lungs had managed to succumb to toxicity i.e. whether I would be getting a repeat PFT (for those of you who enjoy medical acronyms). The answer: yes – If I wanted one as he didn’t seem overly bothered so as per, keen to get my money’s worth, I have that pencilled in for this coming Tuesday. Onwards to the pharmacy to pick up my happy pills (Emend anti-emetics) and I should have sensed that my chemo that week had been cursed when the pharmacist who, from 6 months of reading my prescription chart feels like she can count herself as a close confidante (all good intentions of course), said “Last chemo this week, don’t come back here again then!” –although direct I could tell there was genuine well wishing amongst the attempts at efficiency savings. My real issue – I FORGOT TO TOUCH WOOD (at least that’s my theory). Anyway, next stop: our traditional coffee with the warthogs at the zoo including a rather rash purchase on my part of a newspaper papier-mâché Giraffe sculpture for the art collection to mark this momentous occasion.

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Celebratory end of chemo Giraffe to mark what may be an end to a close relationship I have formed with the ticketless area of the zoo

Wednesday – 24 hours until my big day: taking a slightly more holistic approach to my digestive health and also in an attempt to begin to ween myself off unidentifiable kebab meat, I settle on the more nutritionally friendly Fried Egg and Chips for my pre-chemo lunch. The main task for that afternoon was to head over to M&S to pick up a selection of treats and tray-bakes as well as a card to take in for the unit staff. Though, fairly confident from my eavesdropping that the majority had spent the last 6 months on one fad or another, I also purchased some clementines to lessen the blow. Whilst on our errands I was pretty sure I had spotted one of the hospital volunteers who does the Tuesday shift, giving out free samples of Prosecco – and yet it had never crossed her mind to bring in a couple of bottles or even some boxed wine into the unit. Typical!

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A pre-chemo snack a la Willy Russell. I draw your attention to the suitably neutropenic hard yoke. 

Finally, the day I thought would never come: Thursday 5th October. The whiteboard counter on my windowsill stood at 1 more treatment to go and I could not wait to get the eraser out. Of course, like going into your last exam, these premature feelings of euphoria were tinged with a nausea inducing whiff of Antiseptic cleaning fluid and Country Vegetable soup. Aka Dread! Luck was already not on my side as I’d been given a 10:30 start time, my latest yet, so I already knew I was in for the long-haul stint and, due to the standing room only rush for Rituximab which seems to plague Haematology units, my obs (ie. first contact) weren’t completed till 12:30. We therefore resigned ourselves to acceptance and cracked on with our usual crossword. Little did we know something was beginning to rear its ugly head … a TEMPERATURE!!!!! Ear thermometer engaged. Beeps. (The sweat is often gathering on my brow at this stage whether or not I’m febrile) … 37.7, “hmm a little high”. Credit to the Health Care Assistant, we tried our usual tactics of sticking it in the other ear, taking it again until you get a temperature you want – all the usual stuff. “I’ll come back in 20mins and see again”. Of course, the Haem-Onc suite operates in its own time zone and so 20mins can easily become 40+. Time may have passed but my hot flush hadn’t. “37.8. We’ll have to get the doctor to take a look at you”. In the meantime, windows and the patio doors had been opened, however, some of the slightly older and more vulnerable clientele began to complain of the cold, to which I politely replied, we’re all in this together so it’s a small price to pay for me to get my last chemo! I had also received pressure from many members of staff to remove my hat in an attempt to cool off (not as you may have first thought that Ward 60 is a place of worship). I had one small issue with this … in celebration I had decided to give the wig an outing but had also done some experimentation combining it with my grey hat (affectionately known as my Cancer Cap). Unfortunately, the reassuring bulk of my headpiece in comparison to my usual meagre hair rations meant that it was a bit of a tight squeeze to keep the two in place and if one went, so would the other. This did not help with anxiety. My options were few: A) Get it over and done with and go from full head to bald head in a matter of seconds B) Pull the curtains round and do some adjusting C) Sneak to the toilet to access a mirror. After pressure from my mum to avoid eternal embarrassment, I opted for C. Quick tending to the head complete, hat secured and wig not so safely stowed at the bottom of my backpack underneath a packet of Ginger Nut Biscuits, crisis had been averted. As I’m sure you’ve gathered from the symbolic length of this paragraph, the waiting continued. The registrar eventually came, gave me the once over, did some mumbling and came to the conclusion. “I don’t think we need to admit you just yet. Antibiotics and Chest X-Ray. But you can have your chemo” – I breathed a sigh of relief. “Ok, so your Dacarbazine is down for 60 minutes so we should have just enough time”. Ahhmm, wait a minute. Wrong answer – to the loyal readership, you will well know that this was out of the question and I had been planning to go all out today and aim for the Guinness World Record 3 hour mark. Calculations complete – “No, we don’t have time. Can you come back tomorrow?”. After a visit to radiology and a return visit to the pharmacy to pick up my hefty antibiotics as well as a replacement Emend which I had already popped in anticipation earlier on, it was well after 4 before we were finished up. Determined not to see it as a wasted day, we headed across the road for a debrief over a Morrisons Latte, getting home just in time to surprise my dad with how well I was looking following our outing.

Friday, Last Chemo Take 2: We returned the next day filled with regret that we had handed over our Thank you gifts a little too early (nevertheless, they were of course much appreciated). Things ran a little more smoothly bar some cannulating difficulties as my veins have begun to resemble those of a drug addict (mostly true). Finally, at around 5 o’clock in a deserted unit where even the cleaners had long since left, I was bandaged up, temperature taken: 37.7 to which my consultant responded “Just let him go”, hugs exchanged, we were on our way.

Post-chemo emergence was not quite the jumping for joy ecstasy I had been naively expecting. Evidently, 24 weeks of poisoning had taken its toll and Friday night I felt ROUGH and we were back to the bucket beside the bed routine of chemo no. 2!!! My transition has therefore been exceptionally steady and deservedly, most of the past week has been spent indulging in lengthy naps and daytime TV, with major excitement limited to a brief expedition to Aldi and a return visit from Franki from the Teenage Cancer Trust for a discussion on the zoo warthogs. My time in splendid isolation has been well-spent though as I continue to keep those brain cells active with my Oxford accredited History of Medicine Online Course (such a historian!) as well as dipping my toe into the world of meditation through my Headspace App (a gift from the wonderful people at Trekstock). The only major attraction on the chemo tourist trail this time was a steady stroll and autumnal iPhone photo filtering at Delamere forest on Sunday.

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If you go down to the woods today, you’re sure of a big surprise – a habitual Haem-Onc attendee! 

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Going for a ‘hike’ in the woods a mere 9 days after finishing chemotherapy – you’re barking up the wrong tree! 

There has been one final development on the hair front … I am now happily bald. HOWEVER, I would like to add that I did finish 6 months of chemo still with hair on my head, a proud achievement. Recent weeks have left me not being able to leave the house without a woollen hat or wig depending on the mood.

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The relatively omni-present (these days) wig & hat combo – Or, as I prefer to call it, my Justin Bieber look!

Anyway, so it was on our Delamere wander when my dad noticed that I had a few whiskers on my left cheek and suggested they needed some tidying that I thought, well if I’m going to shave that bit I might as well just do the whole thing. I have secretly wanted to shave the head for a while now but had been persuaded otherwise. I’m not entirely sure why I have this fascination; whether it’s down to, in a twisted sense of inappropriate morality, wanting to do the whole ‘chemo experience’ / if it’s as other people describe, a chance to be a bit more in control for once / mainly I think, in a practical sense, I was just getting that bit fed up with constantly waking up and having to brush the hair off my pillow and fish it out of my mouth (yep – fur ball) and undoubtedly my mum was thinking the same with regards to the shower shedding. There’s mixed press as well as to whether or not shaving off the remnants allows a fresh start for new hair growth but I’d also had some concern that when the hair returns it can come in all sorts of shapes and colours so rather than having a 2 tier colour spectrum going, I might as well have a blank canvas, though admittedly it would have been a talking point. Also, a final justification, at least now that I am open-top I will definitely know when even the smallest hair returns and it shall be a pleasure to watch my scalp flourish over the coming months. In the end though, the Doxorubicin needed some help in shifting the last speckles of herbaceous border from up on high and, Cluedo style, it was my dad with a razor in the upstairs bathroom that finally revealed my rather reflective scalp to the world … 100% with my blessing of course (before the more concerned amongst you get on the phone and ask Jane the social worker to make an unscheduled home visit!). How am I enjoying my new look?? To quote the ‘inspirational’ figure of Flo-Rida: ‘I don’t like it, I love it’! It’s all quite tragically ‘novel’ (but do take that with a pinch of salt as I would be one of the first people to admit how tough losing the hair has been!) and a rather appropriate turning point in my chemo/cancer/Hodge CV.

‘WARNING: THE FOLLOWING IMAGES SHOW SCENES OF GRAPHIC HAIR CUTTING’

What hair loss? … Admittedly, shaving my head AFTER having finished chemo does make me feel ever so slightly like I’ve come out the wrong end of a student dare OR that I have signed myself up for some sort of cult. Mind you, I could well have done with the amount of stuff I’ve had my name put down for in TYA circles. 

Well there we have it, there were definite times when the end felt a million miles away (much like this blog post) and that I would be spending the past 24 weeks with my head firmly down a toilet. There are still a couple of things on the Hodge checklist to get ticked off (Scans/Appointments/PFTs/Neutropenic Diets etc. so we’re not quite out of the woods yet). Rest assured that the upside of that scenario, chemo may be finished but unfortunately the blogging isn’t …

A plus 😉 x

Fidgety Cockatoos, Fittings and The Final Countdown

Time continues to fly by in lymphoma land thanks to the well trodden path of chemo peaks and troughs (admittedly more of the latter) …

After the excitement of all my TYA visits that brought the last post to an end, I was in need of a bit of escapism and some retail therapy so Saturday was spent covering my nose and mouth amongst the crowds at Cheshire Oaks. The major purchase of the day on my part … a Lindt Advent Calendar – yes I am guilty as charged of being unable to resist a festive bargain and I look forward to returning there in a couple of months’ time to look down upon those crazed shoppers purchasing at full price!

It turns out though, I was not the only one looking forward to December as on Tuesday I was up at the crack of dawn to try and beat the rush hour traffic across town for a return visit to the dietician. The verdict – even to the untrained eye it is clear that my weight gain curve continues to increase exponentially – at least on my steroid free Hodge scale of things. My binge eating efforts are clearly paying off as the dietician remained pretty gobsmacked that someone could have managed to put on approx. half a stone whilst still on active treatment! I also discussed the dilemma of those times in the afternoon when your stomach begins to rumble but you’d really rather have a solid snack rather than reach for a Fortisip Compact. As a result, I am happy to say we reached the shared conclusion that common sense will prevail and Compacts can take a back seat in favour of whatever I happen to be craving at the time (at the moment, this seems to be Ready to Eat Roast Chicken multipacks, possibly an attempt on the part of my conscience to appease the KFC withdrawal symptoms). However, this leaves us with the major issue that I still have a plethora of these unmentionables filling up the fridge (c.22+) and before you ask –No, I have already mulled over the logistics of pouring them down the sink but have decided not to for fear that their calorie richness could result in a blocked drain! I suppose I will just need to rekindle my downing routine. Anyway, to cut a short story even shorter, I am to return for a follow-up in December when I fear, if I continue at the current rate, I may well be on the receiving end of a referral to Slimming World.

For those more insightful readers, you may have also clicked that there was another return visit to take care of. Indeed, for once, my pre-chemo Wednesday was a busy one as we headed back to our stomping ground of east Cheshire mansion country to pick up … THE WIG! As per usual, to get our petrol money’s worth we made a pilgrimage to the mecca of the golden triangle, Alderley Edge, for a bit of snooping, a wander around a wooded garden and the obligatory coffee stop at the local haunt of The Wizard.

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The obligatory Latte in a glass – the defining feature of Alderley Edge! 

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Eastern Cheshire is just a place of magic – both of the tearoom and hair restoration variety.

Before long, at the slightly more sociable time of 5 o’clock we were heading back to the ‘Private Hair Clinic’ rather apprehensively I must admit. One of the other problems with these ‘exclusive’ venues once you’ve actually found them, is the lack of parking. Indeed, as we pulled up we could see that the single parking stop rather annoyingly had a Porsche sitting in it. After allowing a little leeway just in case it was another client, we soon decided that I should head in, just to let the hairdresser know that we were there and ready to go, before he put out my wig with the recycling. Whilst my mum parked the car down the drive, I was whisked away into the chair and awaited my new accessory. Before long, out came what can only be described initially as a cross between something befitting a stand in for Dot Cotton from Eastenders and a half-hearted attempt at a taxidermy badger. Unfortunately at this point, my mum also walked in and we both gave each other coded glances of ‘Just smile and don’t say anything’. Luckily the hairdresser’s intuition grasped this and he said – ‘don’t worry, we’ll give it a trim!’. Nevertheless for the vast majority of the consult I was still left thinking, ‘I’ll only have to wear it the once / Thank god I’m not actually paying for it’, until all of a sudden from beneath the real hair locks, I looked up to the mirror and what did I see … Me! Or at least the closest you can get to me off the shelf! A very surreal moment and to be honest it was only after looking through old photos that you realise, yes, I did used to have a fair bit of hair up there rather than the whisker like strands that are slightly lacking on the insulation front these days. The trick with the wig, apparently, is to leave it looking like you need a haircut so obviously there are always going to be some slight limitations but taking this into account we left with a bit of a spring in our step, content that our trips east had been far from in vain. Not forgetting, my own polystyrene head (the real reason for all this trouble) and vital instructions on how to care for your new head vegetation (30 degrees spin cycle once a fortnight, don’t wash with whites). All very exciting though it does take some getting used to and there is still such a thing as bad hair days even with a wig!

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The product of an afternoon trimming and significant financial investment – I shan’t reveal the cost of the wig but safe to say I would be advised to take out an insurance policy asap. for my prized asset! Also it’s something about the rear view that I think makes it truly authentic. 

Being such a novice at this real fake hair game, it was a little too daunting to go through my new hair routine in time for chemo 11 as it would probably have required having to rise at c.5am, so appropriate head covering was chosen instead. In typical chemo luck, my ABVD regime was not content with stealing one birthday (my own, way back in June) but two as unfortunately cycle 6 day 1 also happened to be my mum’s birthday! Fortunately, my dad decided to join in on the day’s festivities and took her out for lunch at the local 2 for 1 restaurant so all was not lost! Rather disappointingly this also turned out to be the longest day so far, in for 9:15 out by 6:00, AAHHH! My only major source of entertainment being the usual chemo gossip of my reclining chair neighbours mainly centred around concerns over the welfare of a Cockatoo who had been left in its cage all day when, in an ideal world, it would have been let out to fly at around 5pm, after newspapers had been laid out to cover the heirlooms of course. There was equal concern for someone else’s two cats who had only been left with dry food rather than Whiskas (Crikey, they could have asked me to lend them a couple of Ensures if they were that desperate!). Many other not so ‘confidential’ words were exchanged which I may one day put to print in the bestseller, Overheard on Chemo. Again, I did not leave empty handed as I was gifted with a traditional Dutch breakfast cake thing to sample at a later date!

It was one of those post-chemo weekends again when I had to be on top bouncing back form as Catriona and Sean were up for the extended birthday celebrations. Saturday was spent wandering around Norton Priory on the outskirts of scenic Runcorn with plenty of iPhone macro photography of the autumnal foliage. Sunday was a birthday treat with a trip out to Arley for the Great British Food Festival which was thoroughly enjoyed by all despite me not being able to take full advantage of the free samples so it is noted that we must return next year. For now, smelling the range of Biltong’s and eyeing up the Toffee Vodka will have to suffice.

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Beware – a neutropenic’s worst nightmare! Pass the Dettol please … 

In my 2 week cycle of things, it was yet again time for Jane the social worker to pay a visit with Tia in tow to lessen the blow slightly! Here we were also gifted with a selection of unidentifiable herbs and medicinal mints to plant in the garden as usually happens when social services pay a visit. Wearing the new headpiece led to the discussion of the eyebrow issue and for Jane to leap up with various powder concoctions whilst exclaiming that she had done a course in beauty in a past life but equally to keep this on the QT so as not to cause jealousy amongst her other anonymous clients wherever they may be. This took up the majority of the visit with varying degrees of success and I think I got off quite lightly particularly as Tia admitted herself, her scouse brows might be a bit hefty for me! The visits continued on Friday with Franki from the Teenage Cancer Trust popping in for a brew and catch-up as well as passing on details of the upcoming male TYA look good feel better event – well established for women, the Clatterbridge contingent are piloting their own for young men with advice on all sorts about making yourself look presentable whilst on chemo with FREEBIES apparently as well so obviously stingy as I so often am, I was sold and signed my name on the dotted line.

As neutropenic living dictates, me and mum were left behind as my dad ventured across the water to Ireland again and with our well established Keep Calm and Carry On attitude we began our ‘long weekend’, though my sister rather jealously (I assume) pointed out that surely every weekend is a long weekend when your main engagement is fortnightly drug taking! I beg to differ, indeed I struggle to see how I would ever have time for a full time job when there’s so much quality daytime TV and pottering to be done. Back to the point … we made the most of not great weather with a wander up the Wirral to Port Sunlight then to see some glassblowing in St Helens (of course) before finishing off with some cattle spotting at Attingham Park on the outskirts of Shrewsbury.

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Unfortunately given the persistent alopecia appropriate headgear is a must for me these days!

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Sometimes a woolly hat can be the best wig of all – note evidence of the changing seasons as the Primark fedora of previous outings is now safely stowed away!

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Some rather appropriate macro photography for the beginning of October

And now I sit writing this, wearing the wig which is growing on me so to speak, even after a minor incident attempting to use some wetlook hair gel on it with mixed results. We live and learn … Oh and yeah, the small other thing to mention for those numerically capable amongst you, I have indeed had 11 chemos and the rather tempting prospect of just 1 more to go on Thursday. Mixed emotions (doom and delight) obviously, though it is handy to have a little bit of motivation that by this time next week (fingers crossed) cannulas and cytotoxic cocktails should be a distant memory with only a lack of eyebrow x2 as a subtle hint to my occupation for the past 24 or so weeks!

So I bid you Adios and the next time you hear from me, the red bags of Dacarbazine should be gathering dust somewhere far, far away at the back of the cyto fridge!

Ciao x

PS. Just thought I would also take the opportunity for a subtle bit of promo for the legendary Heaton Park Halloween Fun Run which is now only weeks away. The rest of the Boyd clan shall be running (and walking) raising funds for the amazing work of Dreams Come True – one of the fab charities I have been lucky enough to work with (and model for!) – who provide children and young people with serious and life-limiting illnesses the chance to achieve a dream, providing a vital opportunity to make some life-lasting memories and to escape from the routine of hospitals, hospices and appointments, if only for a little while! So, if you happen to have any of those old round pound coins hanging about, they would be very much appreciated! AND an extra huge thank you to those who have already donated 🙂 x

https://www.justgiving.com/fundraising/the-boyd-family-run?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=The-Boyd-Family-Run&utm_campaign=pfp-share&utm_term=ak9dqDNX7

Wanders, Wigs and Wishing it was already October!

Before you complain about it being all quiet on the blogging front recently, I offer up the following excuses in my defence

  • I was waiting to see if anything would come re. one of the Ws in the above title – one of my major recent adventures in the cancer world
  • My subscription to Microsoft Word recently expired (aka. my drafting/proofreading resource – yes I know, as natural/free-flowing/off the cuff/stream of consciousness style as my blogging may seem, there is method in the word assembly – also my spelling these days can be as suspect as the teleportation like contraption used to whisk off my Tuesday blood samples from the phlebotomy room straight to the lab.

Now where did I leave off last time … post number 9. I recall I had a fairly busy off week of pottering around the place, general tidying and artistic photo/postcard arranging which for some reason has become a bit of a frenetic obsession of mine recently. Come the weekend, determined to make something of the fact that rather annoyingly I hadn’t been given the NHS ‘ok’ to travel over to Dublin for a family wedding, myself and my fulltime carer (if the DWP is asking) (Mum!) headed off on a couple of expeditions to make the most of the last slither of summer in eastern Cheshire, with alcohol gel fuelled picnics/visits/extensive application of iPhone photo filters of dramatic garden scenery and the obligatory outdoor sculpture exhibition that no rural escape would be complete without. Come Sunday, we braved the torrential rain and headed across the border to Llangollen to briefly rendezvous with my sister and Myles who had been up for a wedding. We managed some rather thrilling window shopping focused on a local taxidermist’s enthralling display of stuffed weasels (and similar).

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The key to staying upbeat during chemo: A spot of animal stuffing!

Mount Pleasant Gardens

Appreciating modern art Cheshire Country Life style. Photo only complete with the perfect filter for capturing static livestock

Biddulph Grange Gardens

Being neutropenic can often feel like walking along a hypothetical garden path, not knowing what might be lurking around the corner: a coach load of sniffling children? a soft cheese??

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Taking a moment out of my busy routine to recline

As ABVD routine prescribes, the days leading up to chemo day seem non-existent by the time bloods, prescriptions and the pre-chemo shop are completed. In particular, on a Wednesday, it seems that by the time my doner kebab has defrosted, the day is over – a similar phenomenon I find to the day before you go away on holiday apart from in this scenario the dread is not ‘Where’s my passport?’ but rather ‘Am I ready to be ill again?’ and the thought regularly crosses my mind of whether or not I could just get away with skiving off this week! Unfortunately, although vein pain has improved in recent sittings, the 2hr Dacarbazine rate selected may need to be pushed back for my own vascular sanity and to prevent, to use the colloquial term, an onset of Superficial Thrombophlebitis. Nevertheless, I did not leave empty handed (besides the obvious excess fluid) as my riveting chemo conversation had earned me a box of Cadburys Heroes from a neighbouring one-off Haem client – I know, I just tend to have that effect on people.

On the other hand, one unwanted gift I shan’t be boasting about is the perpetual grey cloud that appears to descend over me following chemo, in particular on the Saturday post-poisoning. It almost comes just at that point where you feel just enough alive to realise …. how just about alive you feel – everything seems a struggle, life is rubbish, no incessant Friends marathon on Comedy Central can bring a smile to your face, everything is annoying … I can go on you know! The only cure – go to bed. Advice to others – temporary avoidance. By Sunday, although I still stumble around the house I can at least see the sunshine emerging or whatever similar horrendous inspirational quote you can come up with (no doubt taken from a certain Fault in Our Stars – dare I mention it – ‘This is not a pipe …’, no no, something along the lines of ‘You Can’t Have a Rainbow without a little Rain’ or similar …. Uhhm, pass the Cyclizine please!).

Emerging tentatively from the other side, the focus of major excitement this week – one word, WIGS. Last week, after much consideration and long deliberations, I decided to get in contact with another fab charity (yes, trust me there is no shortage in the TYA field if you know where to look) Hero by LPT (another one for the google list for the curious amongst you). They have always been well established as the leaders in the wig market for children and young adults suffering hair loss (chemo-related or otherwise) but often, you’d WRONGLY assume that chemo wigs are only for women and it is this myth LPT are attempting to banish through the recent launch of the Hero campaign. As I often boast, I personally think my hair looks pretty remarkable for 20 weeks of alopecia inducing drugging but thought, you know what, why not? (I’m only planning on losing my hair from chemo once in my life so I might as well do it properly, so to speak!). After speaking to the charity I was put in contact, on their recommendation, with a hairdresser who would be happy to have a consult with me and investigate the options. Excitement mounted after a quick google map revealed that I would be attending no less than his Private Hair Clinic within striking distance of Hale/Wilmslow/Alderley Edge – the golden triangle for those in the know (and for those not, think either Real Housewives of Cheshire – not that I have ever had any strong desire to indulge in that / Man Utd Footballer mansions) – I couldn’t refuse this brush with high society. The day of the appointment (Wednesday) arrived and as per usual in our chemo downtime waste not want not attitude, we made a day of it with a wander around Tatton Park in an effort to perfect my received pronunciation whilst also taking shelter from the torrential monsoon like showers of recent days. Armed with an address, the Old Post Office, we headed onwards but had the slight hitch on arrival of not being able to spot the place. In fact, the establishment was so exclusive, there wasn’t even a sign on the door, merely a red adjacent post box as a historical hint! Half expecting to find local resident Rio Ferdinand or Harry Styles of Holmes Chapel fame in for a trim, I settled in to my in depth consultation over the hair issue! Head measuring complete, it was on to the rather touchy issue of colour matching for my new garment with a selection of samples being pulled and placed as my rather fragile hair was assaulted from all angles. Adequate colour selected (Golden Retriever with Maroon highlights), we were on our way, though if I’m being perfectly honest the only colour I think you could find up there at the moment is Bald Patch. You’ll have to await news and photographic evidence of said wig or Hair Loss Solution, to use the correct term, in the not so distant future (i.e. I am to return next Wednesday!!). The war against Wig Referral being marked as an N/A due to the fact that I was male in my original chemo induction and ‘Wig Equality’ continues …

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Pre-wig appointment: try as you might, I’ve still yet to find an appropriate iPhone filter that can add eyebrows and a decent amount of head foliage. 

It has been one of those rare things of a rather successful TYA Cancer Support week for me, as on my return home I was greeted with the lovely postal surprise of my welcome pack from Trekstock (the charity, I know I am in desperate need of a synonym, behind my Heaton Park brunch). Similarly, on Thursday I had the pleasure of a long awaited visit from Franki, the youth support coordinator from the Teenage Cancer Trust at Clatterbridge, to tell me all about exciting goings on re the cancer social scene, with the Find Your Sense of Tumour conference happening in November (which I’d had my eye on for a while) as well as the local monthly meet ups in the Liverpool area including amongst other things, the traditional Nandos & Panto in December! She also reassured me that I am definitely not the only under 24 onc club member in the area!!!

With just 2 chemo Thursdays left to go, I feel like I’m in touching distance of the finish line which has unfortunately induced regular dreams of poached eggs and KFC bargain buckets. However, to my disappointment I made the mistake of asking my consultant about bone marrow recovery rates (aka. how long I would have to avoid shellfish and crowded delis, post-treatment) and was slightly perturbed to hear him mutter something about 3 months … AHHH! – though I shall be seeking a second opinion from the nurse practitioner who I vaguely remember saying something about 4 weeks and hopefully we’ll be able to come to a fully risk assessed compromise! In the meantime chemo cravings have mainly comprised of a jar of black olives and snacking crackling to satisfy my salty tooth. AND of course, Compacts have been consumed but in spite of their petite size, the hearty stench of Whiskas remains. I rather unluckily decided to risk trying one neat, something I won’t be doing again in a hurry!

So there we go, the last couple of hurdles are around the corner but I have been warned these can be the roughest of the lot but at least the end of the hypothetical marathon is in sight and all I have to do is waddle across the line!

Ciao x

The Fault In … My Calendar, The Weather and Chemo Sticky Labels

Yet again, I’m thinking I’m going to have to add chemo induced writer’s block to my rather elongated medical cv hence the usual delay in blog proceedings. Anyway …

I wish I could say that chemo 8 ran like clockwork as per the previous 7, well it almost did excluding a small hiccough towards the end of the day. Just as we were getting the low down on the mechanisms of action of each of the chemical compounds (apparently it’s the red one which does the most damage to those annoying cancer cells but is taking my hair with them amongst other things) and I was getting myself psyched for my final vesicant of the day the deadly Dacarbazine, when the nurse came to the final inspection before letting it run free to wreak havoc on my veins, she noticed the small issue of the date. On closer examination, the labelling of the drug stated that it’s expiry date was the 9th August, and although maths may not be my forte, I was pretty sure it was the 10th! Now usually (admittedly pre-neutropenic days), I wouldn’t think twice about rummaging through the fridge and diving into something only a day or so out particularly if it looked and smelled alright (we’re all guilty of that and there’s always that debate over Best Before and Use By etc.). However, I think when it comes to poisons that really aren’t meant for human consumption at the best of times, I don’t like to take any chances. The pharmacist was called up, paperwork was scrutinised and in the end it was deemed the error was in the labelling rather than the production so I was assured that it was perfectly alright to administer. Although they did rather worryingly still offer me the option to have it made up fresh if I was prepared to wait. Keen to get out of the chemo unit that side of Christmas and as reassured as I could be that this was top notch chemo, I gave them my blessing to infuse me in spite of the faux pas and I certainly don’t think there was any question over its potency as I was once more out for the count for the next few days.

Just as I was beginning to slowly emerge from post-chemo slumber, my sister came up to visit for a few days. Time was spent soaking up some fresh air over at Speke on Sunday, tottering around on Monday, a repeat visit to see the elephants, warthogs and toucan at the zoo (a Tuesday ritual) as well as attempting to sneak in as some extras once we found out that they were filming for the next series of the Secret Life of the Zoo on channel 4 (look out for yours truly looking inquisitively at the Prevost’s Squirrel enclosure!). On Wednesday, we took the opportunity to return to see the animal sculpture exhibition at the cathedral now that I felt that I could give the taxidermy my full attention without fear of collapsing from ABVD fatigue. Plenty of coffees consumed before Catriona headed off back down south on Wednesday evening.

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Back at one of my old haunts … No, not what was formerly known as Ward 60 (Haematology Department), but the elephant enclosure! Similar but with less reclining chairs.

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Enjoying chemo-down time with coffee and Warthogs whilst trying to avoid excess media attention – the major challenge these days!  

Unfortunately, I couldn’t even indulge in a long overdue lie-in on Thursday as it was time again for a visit from the social worker Jane. I’d managed to negotiate with her that she could come and see me if she brought along her colleague who is meant to focus on post-chemo transition and to let you know that there is a world beyond the Haem-Onc unit so I was pleased to see Tia in her company when she arrived at the door. As per usual a couple of hours ‘easily’ passed with me agreeing to all sorts of extra opportunities that may or may not come to fruition but I was rewarded for my early morning efforts with a present – a lovely bag of swag (no joke) from the fantastic charity Amy’s Swag (do give them a google) who put together chemo survival kits for young people facing stays in hospital and which was filled with all sorts from chocolate and sweets to one of those very fashionable mindfulness etc. colouring in book things as well as a loofah for good measure! All in all a very much appreciated haul! Fortunately, no talk of rehoming abandoned border collies this time! And perhaps this might mark my transition in my social work pathway to someone with a slightly better sense of direction but who I will be just as grateful to be in contact with!

The major exciting event of this chemo cycle came on Saturday. I’d been doing some research into the Young Adult Cancer world recently, particularly when I was feeling that the typical TYA offerings of a 4 day residential / high ropes course with a bunch of 16 year olds in a forest somewhere wasn’t particularly up my street (or entirely suitable for the immunocompromised), and I’d come across one particular charity called Trekstock (again if you’re looking for some procrastination do give them a look on the old internet) – a cancer charity specifically for people in their 20s (and 30s). I was even more delighted to see they were organising a meet-up in Manchester that weekend and so I marked it on my calendar and after some apprehensive debating about whether or not to attend, I decided to be bold and go for it. Luckily, when checking the details on Friday night I suddenly realised that the event was on Saturday and not Sunday as I’d previously thought – a close call. Unfortunately, that did mean a tight schedule to get there and back since I was reliant on the ‘parent taxi’. Nevertheless, we set off. The original plan was to meet in Heaton Park (my second home – aka. see scene of photo shoot of previous positing!) for a stroll before going off for coffee later on. Unfortunately, the northwest weather was not on our side and we were met with grey skies and showers so the plan was changed to head straight to the café. Therefore, I was deposited on a street in Prestwich and didn’t really know what to expect. In the end, it was simply a very pleasant and chilled chat over coffee although I had to resist the temptation of the selection of variants of poached eggs / eggs benedict and settled on the obsessive neutropenic brunch option of 2 lattes and demolishing a pack of Wotsits when no-one was looking. They’re planning to host more meet-ups in the near future so I will definitely keep my eyes peeled on those and I left feeling pretty pleased with myself to have finally discovered that I am definitely not the only person under the age of 60 to be familiar with IV cytotoxic infusions (and also I was quite happy to have sort of ticked off one of those unspoken chemo to dos that aren’t up everyone’s street – the support group – though I must admit it was far from the stereotypical circle time a la Fault in Our Stars!). (Subsequent Guilty Confession with absolutely no shame attached – the first time I watched it was on one of my post-chemo recovery days – before you send bulk orders of tissues in the post, yes I did know what I was letting myself in for!).

The days continue to fly by as I lurch from one dose of chemo to another and I am now proud to say that I have just begun cycle no. 5 of 6 (aka. 3 horrific Thursdays to go); though I was once more treated to another dietician bulk delivery of the replacements for my Coffee Ensures which I am proud to have finished. Await feedback on how they compare to their slender cousin Compact Mocha.

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Fancy a game of Fortisip Jenga? The irony that something branded as Compact has to come in bulk order!

Chemo 9 did not pass without medical turbulence either, again with the cursed D of ABVD as some issue with the drip stand meant that after quietly snoozing away for an hour or so and looking forward to getting on my way home, the red bag was lifted to reveal virtually the same amount of Dacarbazine as we had started with, hmmm! Evidently I’d been put on the 1ml per week rate. Apologies reluctantly accepted, they then set off at a slightly quicker pace which meant that by the time I was finished, I’d narrowly avoided being asked to mop the floors and lock up on my way out. The only positive I can take from this chemo kerfuffle is that having Dacarbazine over 2 and a half hours rather than my usual 60min full speed ahead meant that my arm seemed fairly content and lapped it up without too much complaint!

On a more general medical side of things, there continues to be a debate over to PICC or not to PICC … line in order to relieve me of my vein pain complaints. Unfortunately, there seems to be no halfway house between suffering in silence and getting the infamous line fitted. No doubt if they’d offered me one from the start, I would have certainly taken it and accepted the associated implications of an extra visit to the hospital every week for its upkeep but I’m more of the view that wouldn’t it be handy if I could go without for these last few doses (which to me at least, seem like nothing!!!). For now, I remain free of any attached loose tubing. And, as per usual there remains a question mark over the hair issue, particularly since I have been reliably informed that there is indeed a charity who make real wigs (not just the fancy dress kind) for young men and my mum has been tempting me to get one, because why not, especially on those days when you are feeling slightly more vulnerable on top. I may have to put the issue to a public vote, we’ll see!

I think that’s quite enough Hodge goss for the moment, so to borrow the commonly used French expression …

A plus dans le bus x

PS. For those of you who want to see the results of 2 hours of hard photo-shooting (and also to make up for the lack of photos included with this post), I will discretely leave the link to the page for the infamous Heaton Park Halloween Run, at your own risk. If I may say so myself, I think my pale complexion is quite fitting for the theme … However, I suspect chemo-grey will not be appearing on a Dulux paint chart anytime soon!

https://www.sportstoursinternational.co.uk/events/halloween-fun-run/

Dealing with Dacarbazine Rashes, Bald Patches and the Press!

Once more I have been plagued by the affliction of blogging laziness (as well as lymphoma!!). I seem to be trapped in some sort of chemo time warp and if it wasn’t for the demands of my ‘extended’ loyal readership, I would barely have realised that its almost 3 weeks since the last post …

Chemo 7 came and went in a bit of a blur of crackers, chicken soup and a rather startling red rash to match the Dacarbazine’s fetching overcoat. This time I’d decided to embrace the new tactic of napping through the last lot of poison but was unfortunately woken by a crowd of nurses checking that I was still with them as blotches soon engulfed my torso! It was evidently quite an eye-sore and in order to ensure calm on the rest of the unit, the curtains were drawn (never a good sign on that ward) and my consultant called forth. In the meantime, as the drug had been stopped, typically my rash had gone and so after confirming that I was indeed still breathing and with his typical gusto of nothing will get between his patients and chemo, we carried on before waddling home for hibernation and several anti-emetics before early to bed.

Rather to my ‘annoyance’, the social worker had insisted she come and visit the next day at 11:30 so I had to drag myself out of bed but fortunately, slightly put off by my general demeanour and lack of enthusiasm for the most un-neutropenic free activities (including a concert and residential in London) she was trying to put my name down for, she moved on! I managed to sneak in a cheeky nap mid-afternoon before my Auntie and Uncle arrived over from Dublin for the weekend. By Saturday I had picked up just enough to join them for an afternoon in town to see an animal sculpture exhibition in the cathedral including the usual formaldehyde soaked corpse of a Damien Hirst calf! Unfortunately, not quite on my top form I probably didn’t appreciate fully the works of art so may have to return at some point later! Sunday was spent heading over towards Manchester for a stroll around Dunham Massey to see the deer before dropping our visitors back to the airport and heading for home. Come Monday I soon discovered that although I’d felt reasonably okish for post-chemical overdose, I’d only put off the inevitable and still very much needed my usual 2 days of nothingness and daytime TV to recover.

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Higher or lower? The price of a life-size Zebra replica or a 3 day course of the miracle anti-sickness tablet ‘Emend’, I wonder! Either way, both are vital to the post-chemo recovery!

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Enjoying the rare phenomenon that is summer sunshine in Britain and having a significant amount of head hair after 7 doses of chemo!

 

My midweek took a rather unexpected turn to say the least … Once upon a time, six doses of chemo ago, I’d been persuaded by the social worker to put my name down for a charity called ‘Dreams Come True’ (a similar setup to their ‘competitor’ Make a Wish) who organise exciting things/holidays (but no Hot-tubs or Building Extensions as the application form strongly stipulated) for children and young people with serious illnesses. The upper age limit was 21 … if you’ve done the maths I applied a mere 2 weeks before my 22nd birthday but was happy to hear that I’d been accepted but equally aware of my age status/feeling there was probably plenty others more deserving than myself, I was hoping to lie-low with it! Fast-forward to a couple of weeks back and I get a surprise email from the fundraising and events co-ordinator for the charity. I opened the email with trepidation only to see that he had asked if I would attend a press-launch for a new fundraiser they were hoping to organise in Manchester. After doing some calculations and working out that it landed in the middle of one of my ‘good’ weeks, I felt like the least I could do was turn up, particularly trying to stay on the right side of a charity who were probably going to give me a free holiday at some point in the future. Anyway, Wednesday we set off to Heaton Park with little idea of what was in store. After meeting with the charity rep and sports company it was soon revealed that the event was going to be a Halloween themed run at the end of October and therefore for the photos an element of fancy dress was required! Now fortunately for my own sake as a so-called ‘Dream Child’ I was only requested to appear as some form of charity mascot/runner so I was able to politely turn down the Batman costume lurking at the bottom of the carrier bag. We then set off to begin what I assumed would just be twenty minutes or so of happy snaps leaving enough time for a wander around the park before hitting the road. Wrong – bribed with a free Latte and in typical professional photographer mode I was posing for just over an hour and a half, most of the time spent worrying about whether or not the rather strong gusts of wind would take off my precarious remaining hair coverage. At risk of having someone call the police to report the suspicious behaviour of a man with a camera and a middle-aged man dressed up as Dracula chasing after a ‘vulnerable’ young adult (myself), at 6 o’clock we called it a day! Photographic evidence (after being censored) may or may not follow at a later date … the things I do for charity (jokes) and I tell you, if things continue as they are I may be in need of an agent!

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Getting the pre-photo shoot pep talk whilst trying to ignore suspicious looks from passing dog walkers. Not everyone is cut out for being a celebrity! 

 

Again, I was most definitely in need of some lazy days to recuperate from my brush with the paparazzi, heading out on Saturday for a BBQ to restock on any lost calories. Come Tuesday it was already time to head back up to the hospital for my pre-chemo checks, but determined to turn the day into something slightly more pleasant, myself and my mum finally fulfilled our promise of going to the zoo (around the corner from the hospital) for a coffee and to see the elephants and warthogs –  the main reason being that you don’t have to pay to see them and it certainly was nice to clear the head of haem-onc in the company of exotic animals.

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It’s so rare to come across anyone that can truly empathise with you over the struggles of the high calorie diet. 

A.O.B.:

  • Hair loss seems to have been the major topic of conversation around the professionals recently with some mixed debate on whether or not the time has come for the infamous ‘chemo-cut’ as I call it. I’ve been umming and ahhing about this for a while but concerned about disrupting the status-quo of being congratulated wherever I go on the amount of hairs on my head, for now I’m quite happy to plod along covering up the growing bald patches in any way I can – long live the comb over! I’ve also had some rather mixed success in attempting to retrieve my eyebrows which appear to have gone walk abouts involving, I must confess, some experimentation with an eye brow pencil, AHHHH – what has the world come to!!! This task has been aborted until the arrival of more experienced support (aka. my sister) next weekend and I’m now thinking I’d have probably had better luck with a mirror and a black marker pen.

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Who knew something so small and innocent looking could do so much damage. I know, it’s my own doing – why did I do a degree in French & History when clearly a short-course in Hair & Beauty would have come much more in handy! We live and learn … 

  • I’m also happy to say I am now in employment (no rest for the neutropenic) … sort of, not really, as after seeing an advert I decided to apply to be a Young Information Reviewer for cancer charity Macmillan to keep me on the straight and narrow over the next little while!

I think that’s all from me for now as the much anticipated chemo 8 looms tomorrow (or cycle 4, day 15 depending on the way you look at it) so I best get back to consuming a 4 figure sum of calories to keep up this weight gain thing (we reached new heights/lows of a side portion of chips with my kebab today for lunch). It’s a hard life having to eat like food is going out of fashion but I’ll swallow the antacids and try my best …

 

A plus x