Here’s to Five Years

I’ve just come back from what has turned out to be my final consultation with the Oncology team at Lincoln County: the 5-year sign-off milestone. It is indeed five years to the day since my last treatment (f**k, where did that time go?).

My nasal passages had a final attempt at forming a barricade to prevent camera ingress; I whispered ‘bye bye’ to the video image whilst admiring the interior architecture of my head; the neck region was thoroughly prodded and massaged, and he pronounced that all is well – I should consider myself ‘cured’ (yay – cue wild crowd scenes).

The Consultant then provided a ‘life’ lecture about the journey I’d been on. Going through my notes, he told me about my very aggressive treatment campaign (no shit Sherlock, really?); the physical and psychological issues (including losing all my facial and body hair over a 6-month period); and how I must now ‘let go’ of the need for re-assurance from the medical team and go live my life. It was a truly surreal and bizarre history lesson…

Given the usual contributory factors of my cancer, and the fact that I didn’t fit the normal profile, he said that I’d been very unlucky in the first instance. At this point, I should certainly stop buying lottery tickets as I’m plainly never going to win. It explains my betting history too. 

For those about to embark on this journey, there have been significant recent advances in non-surgical oncological management of head and neck cancer. These developments are likely to continue over the next decade and beyond as the medical profession develop more effective, less toxic treatments. Some of these involve:

• Improved imaging techniques
• Advances in surgical tools, including robotic surgery
• Improved outcomes through new radiotherapy technologies
• Development of effective post-radiotherapy/chemotherapy adjuvant treatments (adjuvants are added to a vaccine to boost the immune response to produce more antibodies and longer-lasting immunity).

This is the good news: what is more disconcerting is that the standard of oncology services provided in some – not all – NHS hospitals has declined due to funding & staffing shortfalls (quickly climbs on soapbox). The treatment I received was of the highest quality, and I would hate to think that others following in my footsteps would not receive the same – or better. Whatever we might think of the NHS, I owe my life to them. I want others after me to feel the same about this wonderful service. If it requires tax rises to make this happen, let it be so (gets off box: I don’t like heights).

Anyway, back to today: I celebrated by treating myself to fish & chips for the first time in six months, then promptly remembered why I don’t eat fish & chips that often…

So, unless something dramatic occurs, that should wrap this blog up nicely, though I’ll keep posting rubbish on the music page. I’ll also continue to contribute to the Macmillan forums. Thank you for reading it, and for all your kind words: it was always heartening to remember that I had a receptive audience.

I wish you all the best of health!

PS: Embracing my bald bonce 🙂

…and sailing off into the sunset.

Hair today, gone tomorrow

As I get closer to completing the five-year remission period (December this year – tempus fugit) it seemed a good time to provide an update; it’s been a year since the last one. 

I met up with my Oncology team at the end of June, who remain satisfied with my progress to date: so much so, that they’re happy to delay my next check up until December – which will probably be my final inspection. These examinations are now second nature, and all the nervousness I used to feel about going to Clinic 6 at Lincoln County Hospital has subsided. Looking round the waiting area, I get the feeling that other people don’t feel quite as sanguine.

The biggest change may or may not be connected to my past treatment. I mentioned in my last post that I’d started to lose hair: well, it didn’t stop, and I am now a sleek, hairless beast. After a variety of tests and subsequent biopsy, the outcome seems to be that I have developed Alopecia Universalis, a rare condition characterised by the complete loss of hair on the scalp, face and body. It’s an auto-immune disease that can be triggered by anything — stress, or some trauma that “flips a switch” in your immune system. What happens is, your body started treating the cells that make the pigment in the hair follicles as enemies and attacks them. I‘ve a good idea as to what this traumatic episode might have been…

As this has all been rather sudden and visually drastic, I’ve found it hugely stressful. The fact that the eyebrows have gone too gives a completely different look to one’s facial features, and it’s one I’m finding hard to accept. 

The benefits are obviously saving a fortune on hair products & razors (my online suppliers have gone into collective mourning), and my legs, arms, chest, back, etc. look very sleek. I understand that people of a sporting nature – and Love Island contestants – pay huge sums to achieve this state. Also, I’ve taken to buying many, many hats (I refuse to consider a wig of any kind), which – though it could be seen as a strange fashion accessory within the office environment – is very ‘on trend’ in our current sun-kissed climate. Just not in Tesco’s .

This could all be seen as a temporary setback, but it’s most likely a permanent state. In the grand scheme of things it’s a piddling issue, but I was taken aback by the speed of change in my appearance.  Acceptance isn’t easy, but you do discover a whole new world of baldy jokes:

I was in a night club last week and this beautiful girl came over to me.

She patted me on my bald head and asked me, “Is it true what they say about bald men making better lovers?”

I said, “I’ve no idea; I’ve never slept with one.” 

I also have Matt Lucas and Duncan Goodhew as role models 🙂

Until the next time!

PS. Don’t forget: bald is the new black

Two from the Hat Collection 🙂

I’m still here!

I haven’t added anything to this blog for the last 19 months, for no other reason than there is little to report: the quarterly reviews last year passed uneventfully, and we are currently set at 4-monthly periods.  The nasoendoscopy is now second nature, the relief still palpable when the Consultant says he’s happy that all is well.

This week’s visit was more interesting though: yes, the throat is still dry, and I go through up to a litre of water overnight (my bladder complains constantly: ‘what, again?’ ). However, the latest malaise is that my hairline is receding in an unusual manner: from the back upwards. It seems that radiotherapy continues to have an effect on my hair follicles – I still don’t have to shave the underside of my neck, which remains as smooth as a very smooth thing. However, I now have bald patches at the rear. Everyone tells me that I shouldn’t worry: nobody is looking at the back of my head. Apart from constant head massages, I am now planning the mother of all comb-overs.

Honestly, I have bugger all to complain about: I’m thankful to be here and in good health. Even last week’s hernia op was a walk in the park in comparison to my journey into the unknown four years ago. This hospital trip made me think about how much I’d put the past experience out of my mind, and how ‘normal’ everything is now. I’m pleased to have been reminded about updating the blog though: it seems that ‘no news’ is a good news story that people can relate to.

I’m told that therapy regimes are kinder now: as time passes, new developments occur in the field of cancer treatment. The immunotherapy drug Nivolumab has become the first to show a survival benefit in head and neck cancer, after a major international trial found that it was more effective than standard chemotherapy:

https://www.theguardian.com/society/2016/oct/09/immunotherapy-drug-a-gamechanger-for-head-and-neck-cancer

The message is that early diagnosis is the key. It is the main reason I constantly reiterate the need to see your GP if you are at all concerned about any changes you notice/feel. Don’t kid yourself: it might not just ‘go away’, and the quicker you get a medical opinion (not your best friend’s version), the better any potential treatment solution might be.

To end on a more positive note, it’s heartening to think that a ‘cure’ might finally be on the horizon:

http://www.independent.co.uk/life-style/health-and-families/health-news/world-cancer-day-2017-effective-cure-will-happen-five-to-10-years-expert-karol-sikora-a7558846.html

Yes, for every ‘good news’ story, I’m sure you can find ten ‘bad news’ versions (probably all in the ‘Daily Mail’). That doesn’t discount the fact that genuine advances are made every day. Our part in this is to look after ourselves, and be more aware of our lifestyle choices.

In the meantime, enjoy the Summer! I’m off to build an Ark…

PS: My favourite event of the Summer to date – watching Tom Petty at Hyde Park:

…and the spectacular Pink Floyd Exhibition at the V&A:

 

Two Years on

Two years down the road: I was told that this is a significant milestone in as much that, if you can avoid re-engaging with the same cancer during this period, your chances of staying clear long-term is much increased.

My latest appointment with the Senior Oncologist was set for a bizarre time – 4pm on New Years Eve – so the evening could have gone either way. We chatted for some time about how the last 24 months had gone and how current side effects – dry throat, poor mastication, mouth ulcers, lack of facial hair growth – are ameliorated by newer treatment techniques. No benefit to me obviously, but it’s good to know that others about to enter into the unknown will hopefully suffer less side effects.

We then went through the ritual examination, and all was well; nothing he was too concerned about. I have to admit that this was a relief: I’m not sure why I was so nervous about this one, but with a recent first anniversary of a good friend’s passing from identical circumstances (his diagnosis came a month after mine), alternative outcomes preyed on my mind. I’m delighted that the Consultant is happy (and Liz and the rest of the family are obviously ecstatic too), but decided that New Years Eve should be spent quietly, with just the two of us sharing a special bottle of fizz. My past experiences of New Years Eve is that it’s the only acceptable time to wear body glitter without being mistaken for a male stripper, and I thought I’d give that a miss for a year…

There were only three posts by me on this blog during 2015 (all tied into my consultant visits), mainly due to having nothing significant to report compared to my first year post treatment; consequently there is a reduced number of visitors to the site. Indeed, I had more traffic to the ‘Music Hoard‘ page in the summer (have you been there? All my OCD tendencies are laid bare). Future consultant visits are still set at three-monthly intervals, but realistically there’s not much more to add. Still, 10,000+ hits to date is pretty encouraging: hopefully the blog has been of use to those who have read it (and possibly complete b*ll*cks to some), but unless there is anything significant to report, I think it has probably run its course.

Having said that, I occasionally post on the Macmillan Online Community (in the Head & Neck Cancer section). You realise that people starting out on this journey are frightened and scared, and there are a lot of us who, having travelled down this path, can shed some light on what may follow. All experiences differ, but I’m always heartened by the advice freely given  (take a bow, Joyce and others) to try and provide some (hopefully) useful guidance, comfort and wisdom.

Many sufferers find themselves at their wit’s end – to the point of wanting to cut short their treatment, to the despair of family members – and you hope that the mountains of encouragement and support will be of use in getting them through the process. They are all individual perspectives, but this shared wisdom would be my preferred first port of call for anyone about to go on this journey.

I hope you all have a worry-free 2016! Take good care of yourselves, and may all your troubles last as long as your New Year resolutions 🙂

Best wishes

Theo

PS: Radioactive Santa Mask!

The full version…

…and the celebratory fizz!

Scary food?

My latest quarterly probing with the consultant has passed without panic: all is well, to the point where future meetings are to be 4-monthly. I was seen by Mr. McRae, the consultant I originally met with; the one who passed on my diagnosis over two years ago. He’s pleased with the way things are progressing but stresses that it’s still a five-year wait, though the likelihood of reoccurrence is much smaller after two years – and that deadline is pretty close.

There are a number of cancer scare stories being foisted on the public by the press on an almost daily basis, and one UK newspaper seems to publish them more often than some (you can probably guess which one). Here are a few, and as someone who loves to eat fish, the first two caught my eye:

New salmon cancer scare  The Scottish salmon farming industry faces a sales ban and fines after traces of a cancer-risk chemical was discovered in the fish.

Malachite green, a cheap disinfectant treatment for eggs and young fish, was banned in June 2002 but traces of the chemical are still being found in up to 19 per cent of farmed salmon.

The industry is still reeling from a U.S. study published last week, suggesting people should not eat Scottish farmed salmon more than three times a year.

Read more here

Fish cancer scare  Experts fear people who eat fish from waters contaminated by a radioactive pollutant discharged by nuclear plants and factories are at a greater risk of developing cancer than was previously thought.

The health risk from exposure to tritium remains low since doses are still within international safety limits. But scientists are concerned that people who eat fish from waters contaminated by tritium may have received much higher levels of radiation than had been estimated before, according to a report in New Scientist magazine.

Further information here

Breast implants in cancer scare  Women with breast implants are up to three times more likely to die from lung or brain cancer than those without, it was reported today.

The findings come after a long-running US study of 13,500 women who received breast implants, comparing their risk of dying from cancer with the general population and other people who had undergone plastic surgery.

And the study found that women with saline implants suffered the same higher rates of lung and brain cancer as those with controversial silicone implants.

It found they were twice as likely to die of brain cancer and three times as likely to be killed by respiratory diseases, with lung cancer the biggest of those killers.

More detail here

Apart from the need to point fingers at those who produce the food we eat and address issues surrounding cosmetic surgery (then hold the perpetrators to account), the general tone doesn’t necessarily provide a balanced and objective viewpoint. So are they just scare stories? Articles like these are the cause of genuine concern and panic among those worried about cancer, so what should we actually believe, and how much should we be concerned? There are people who believe that ‘all food causes cancer’ (fill yer boots with articles on the web), and those who swear that certain foodstuffs contain miracle cures (see more details here), but who should we look to for clear and accurate guidance? Are we letting articles like the ones above cloud our judgement?

Having had a go at the press, it still pains me that thousands of people in the UK die unnecessarily because they are too scared to mention early symptoms of cancer to either family members or their doctor. A recent survey of 2,000 for Cancer Research UK suggests 40% might delay getting symptoms checked out because they are worried what the doctor might find, yet early diagnosis is key to treating cancer successfully.  Once you’ve devoured the mountain of ‘information’ out there, your first point of call should be your GP if you have any concern regarding cancer: do not self-diagnose, especially via the internet. Don’t rely on hearsay, or friend’s advice – no matter how well intentioned. Your doctor is where your questions should be directed at, and never, ever be afraid to ask them!

On a lighter note, I’ve just come back from a week in Spain, starting off with a few days in Valencia. It’s the first time I’ve been there, and it won’t be my last trip. I love the city: it would not be difficult to set up home there…

Until the next time, I’ll paraphrase the wonderful Bobby McFerrin – don’t worry, be happy!

PS. A few images of Valencia:

Soapbox time

I had my latest three-monthly prodding and squirrelling session a couple of days ago, this time with my original Consultant. He seemed happy enough with what he saw: it’s also the first time I felt completely comfortable with the nasal endoscope. All this time, it’s felt like my head is being violated and my nose feels physically detached from my head for a couple of hours afterwards. You endure the discomfort, but I’m cool with it now. Just a check on my thyroids to go and it’s ‘see you in 3 months time’.

It’s now two years since I noticed the original lump in my neck, and 19 months since I completed my treatment. As the first couple of years post-therapy are critical in terms of any reccurence, the closer I get to that milestone, the happier I feel. Now the next bit will sound like soapbox preaching, but it’s important, so please read on…

In the UK there is relatively little public awareness of head and neck cancer, but squamous cell carcinoma (HNSCC) is the sixth most common cancer worldwide. It constitutes about 4% of all cancers in the United States and 5% in the UK. Head and neck cancers often spread to the lymph nodes of the neck, and this is usually the first (and sometimes only) sign of the disease at the time of diagnosis.

This type of cancer is strongly associated with certain environmental and lifestyle risk factors, including tobacco smoking and alcohol consumption, Patients with these types of cancer are at a higher risk of developing another cancer in the head and neck area but – the crucial point – this cancer is highly curable if detected early.

The symptoms of head and neck cancers may include a lump or a sore that does not heal, a sore throat that does not go away, difficulty in swallowing, and a change or hoarseness in the voice. These symptoms may also be caused by other, less serious conditions.

I’m not writing this to frighten people: I just want to make you more aware of this particular type of cancer, and emphasise as strongly as I can that it is important to check with a doctor or dentist if you have concerns about any of the above symptoms. Who knows, you might thank me for it one day 🙂

Okay, sermon over with.

We’re soon to do a bit of sailing, this time around Sardinia and Corsica. We’ve sailed there before and had much fun, including one of the most startlingly beautiful entrances into port – sailing into Bonifacio harbour in Corsica. I’m very much looking forward to it!

Until the next time – enjoy life!

PS. Bonifacio from the air – pretty, n’est pas?

Medicate With Tea

I’ve just come back from my latest (now) three-monthly review, renewing my love-hate relationship with the nasal prowler. A different consultant, unsure of my past notes, but reassuringly thorough during the examination. He’s happy with my progress and fields my questions with ease: I feel suitably relieved, as do the rest of the family with this news. We march on…

I’ve had a number of unusual ailments recently, i.e. ones which don’t involve winter sniffles / man flu or falling over stuff. Its never been in my nature previously to panic, but now you can’t help feel that they could somehow be linked to the cancer. I’ve since had a number of additional blood tests and examinations, but the doctors don’t feel I’ve any need to be concerned – so I’m won’t be. I still can’t shift the mouth ulcers, or the nightly dry and sore throat, but the Lymphoedema has calmed down, so the need to massage is significantly reduced, and the Kinesio tape is consigned to the bin. 21 months after the cancer symptoms made themselves known, life feels pretty normal.

At present, there is much publicity regarding cancer awareness in both the media and social network sites, with many warnings about the increased likelihood of people developing the disease in the future. We’ve been vigilant to the dangers of smoking for many years now, but we’re gradually becoming more aware about how much our diet and alcohol intake can potentially be instrumental in causing cancers. A review of how both lifestyle and diet affects the risk was published in 2011, and it found that 4 out of 100 cancers were linked to alcohol, and around 1 out of 10 cancers may be connected with your diet. Factors included eating less than five portions of fruit and vegetables a day, eating too much red meat, not eating enough fibre and taking on board too much salt. Apart from obesity and alcohol, there isn’t much specific evidence at the moment that diet can reduce cancer risk, but a healthy diet may help and it will also lower your risk of other diseases, such as heart disease.

I’ve become far more conscious of my diet since treatment ended: this doesn’t mean I’ve become a born-again food fascist, just minimising processed foodstuff and taking on board far more fruit, salad, nuts, vegetables and fish. My strangest side affect is that I’ve developed a sweet tooth: I find it hard to resist chocolate, something I could previously quite happily live without. If I come round to yours, hide the Kit Kats (other processed choccy bars are available). I’ve also developed an addiction to infusion teas (otherwise known as ‘hippy sh*t’ tea to my friends). Considering I’d not gone anywhere near a teabag in my previous 55 years, this is quite a step change.

Apart from that, things are generally steady. Cancer rarely comes up in conversation until I think about the three-monthly inspections. It’s quite satisfying to be getting on with my life: it’s also great to be going to lots of gigs again. I’d forgotten how much I missed sweaty venues with sticky floors…

Until the next time!

PS. Yes, the title is yet another song reference: ‘Medicate with Tea’ by Emilie Autumn
http://www.youtube.com/watch?v=ty33_k9iLgs

PPS. The latest use for a Radioactive Mask (no.7): take it skiing.

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog, and I thought i’d share it with you. Considering that this was my first year blogging (indeed, my first ever attempt at creating an online presence), and it’s a fairly, er, specialised topic, I’m gratified with the feedback received and kind responses I’ve had to specific posts. I hope some of you have found it useful, and if not, I refuse to take responsibility for wasting your time 🙂

Please feel free to pass on my link to anyone you think might be interested. It’s not exactly an alternative to J K Rowling, but then again “Harry Potter and the Lump of Doom” might be misconstrued…

I wish you all a happy and healthy New Year! Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 6,700 times in 2014. If it were a NYC subway train, it would take about 6 trips to carry that many people.

Click here to see the complete report.

It’s Been a While…

In fact, three months have gone by since both my last examination and posting on here: so what’s changed? Well, I saw the Consultant last week: he’s pleased with my progress, saying that there is no sign of the cancer in the treated area. He’s happy enough to sign me off for another three months, stating that should I feel any ‘differences’ in my circumstances – no matter how remote – then I should report in immediately. I’m not sure if that made me feel any better or confident in his prognosis, but as I do definitely feel in fine form nowadays, I’ll let it pass…

Regarding my persistent dry/sore throat issues, I picked up some useful information on one of the Macmillan forums. Whilst chatting to his ENT consultant about a similar problem, this individual was told that, apparently, a lack of saliva is not the whole story.  We have three large pairs of saliva glands and numerous small ones, and the radiotherapy causes some damage to these: some of them do recover with time, though the smaller ones are sometimes permanent casualties.

Even with a reasonable amount of saliva back in his mouth he was still getting a very dry and painful throat, which paradoxically seemed to be made worse by drinking water: exactly what I am experiencing. It turns out that we also have a mucous membrane lining in our throats, and this too is damaged by the radiotherapy.  Water gives me temporary relief for a few seconds, but washes away the little bit of natural lubricant that my body is managing to put there.  Oily foods during the day are sufficient to keep the dryness at bay, but night time is when it’s most uncomfortable. Having gone through various unsuccessful attempts with recommended mouth sprays, it seems that it’s just another thing to get used to. That and the wobbly jaw.

Honestly? This is pretty insignificant in the grand scheme of things: a year after the thumbs up from my consultancy team, I’ve come out of this in pretty good shape. Others I know well have not been as lucky, and I’m reminded what a complete crap shoot this whole experience can be. Quick diagnosis can be a significant factor in successful recovery, so I cannot emphasise enough that, should you feel that there is something ‘not quite right’, go straight to your GP and ask questions – and don’t be fobbed off with non-committal responses.

Apart from this, Liz and I had our ‘special’ holiday – the one we cancelled from last year. If you ever get the opportunity to go on safari, grab it: it’s a life-affirming experience. Attempts to sneak a lion cub back via hand luggage were quickly and firmly discouraged…

Lastly, I finally got to see the Peter Gabriel tour I had to miss out on last October!

Hope you all have a joyous time over the Christmas and New Year period!!

PS. Peter Gabriel doing his thing, followed by some cute ‘n’ cuddly things…

A Year to Remember

I’ve just had my latest consultation, including the ‘Snotcam’. We talked about all the various issues and after-affects that beset me, but the consultant is satisfied – nay, happy – with my progress; enough to reschedule future inspections on a quarterly basis. Not much I’ll miss about those trips to Clinic 6, except seeing the Duracell-powered Marie, my wonderful Macmillan nurse. 

My next visit is planned for early December, and this one (hopefully all being well) will be a bit of a landmark. I was first diagnosed last August, but my preferred ‘C’ birthday is 11^th December; marking one year from the day I was told by the Oncology team that they believed the treatment regime to have been successful (cue loud synth-led fanfares). 

Before today’s consultation, what struck me whilst absent-mindedly peering up from my book (they were running late) and looking round the waiting room, was seeing people who were not just going through the same inspection process, but also those who were being told the news for the first time. I saw such a person today: I started to recall that afternoon last year, and felt a cold, dark shiver. No insult to the staff at Lincoln Oncology Department, but my obvious preference is to never have to go down this road again – and my daily regime has changed to hopefully give me the best chance of achieving this aim – but I find it interesting to look back and realise that everything about my outlook to life and future expectations is now different. It’s also comforting that so much of what surrounds me remains the same – my wonderful family and friends, home, favourite places – but I seem to love them all even more. I find it difficult to explain why this should be… 

I’ve conversed with many wonderful individuals through both this blog and online forums, and the ability to share experiences – both good and not so good – with new visitors who are just about to embark on this journey (hopefully providing a level of reassurance), is very satisfying. Reading through other people’s experiences post-treatment makes you understand that no two journeys are the same: we’ve all reacted differently regarding our ability to cope with the consequences of cancer, both mentally and physically – pain management, fatigue, work, daily routine, interaction with loved ones, etc. I’ve met with / chatted to a number of people in similar positions, and one of the things we do share is ‘gallows humour’ – comparison of scars (ranging from ‘wow, that’s neat’ through to ‘urgh’); painkillers (from useless, via valiant attempt, through to mind-blitzing); food (disgusting, manageable, verboten); drink (when did a beer start to taste like beer); sleep (can you catnap standing up?) – basically, whatever it takes to get you through this.  

Sadly, one person whose blog gave me many laughs and thoughtful moments passed away last week. Even though I never met him, his ability to cut through the crap and fully understand his situation (making you question your own thoughts and feelings), whilst smothering the whole thing with a layer of vicious humour and liquid prose, filled me with admiration. My thoughts are with his family: I hope they understand how much he brought to others. 

Let’s look at cheerier things: we’re off to London soon for a very late Birthday treat – a rather special restaurant. We tried something similar just before Christmas last year, but it wasn’t a great success for me, and I didn’t have the balls to get our famous-name chef to liquidise my main course. I’m sure this one will be far more successful 🙂

Until the next time!

PS. 101 uses for a Radiotherapy Mask No.6: turn it into a spooky desk lamp.