IX. Two sessions of radiotherapy to go

Dear All

I have now completed 13 sessions of radiotherapy and with 2 to go - tomorrow and Tuesday, it does feel like the treatment journey is drawing to an end. However, I was reminded at my mid radiotherapy review meeting with the registrar last week that my walk with cancer has still got some way to go; more of that later.

I can not praise enough how truly amazing the St Luke's radiographers are. Polite, professional, efficient, humorous, dedicated are the characteristics of each team that have had to haul me around to position and align me whilst making sure I'm OK. I guess the first session was the most memorable due to the fear of the unknown but as the two kind Irish radiographers (with self proclaimed slightly cold hands) moved me in position, I quickly learned that all was going to be OK. I even had a bit of a laugh with the radiographer from New Zealand (I dare not bring up the pending Rugby World Cup up with this chap, probably best not to upset a man in charge of administering radiation to your abdomen) who is always cheerful. I am very grateful that the radiographers allowed the above pictures to be taken. These are "pre-degowning" I'm not quite ready to show my bare stomach on the internet. The picture on the right shows one of the green laser lights from the wall which are used to get me in the exact position.

With regards to the radiotherapy side effects, what I've experienced so far can be described as mild with respect to nausea and moderate on the tiredness front. Apart from the increased amount of siestas and power naps I'm craving, my general sleeps are also much earlier and deeper than my usual routine. I have also been craving 'hangover food' and sure I have been responsible for increasing Ronald McDonalds share price. Due to the accumulation of the therapy, I've heard these effects will last for a few more weeks or so.

With only 2 sessions left to go, I have reflected on a question from a friend, "will it be strange not having radiotherapy every day?" and although the answer for this is pretty obvious, I will miss the time out each day which a session allows and time I've spent with the Lord - I'm able to get a good Lord's prayer in during the 50 seconds or so that each zap takes!

The meeting with the registrar was very positive and my long term follow up was discussed, I will put this onto my next blog . . .

Thank you again for all the super notes of support I've received.

Best wishes

Stuart

VIII. Radiotherapy

Dear All

I've now completed day 5 of 15 radiotherapy sessions. I wouldn't quite say 'time flies when you're having fun' but it certainly hasn't been too bad, so far. The main effects appear to be tiredness, some funny tummy sensations, oh and an emotional moment on a rainy Friday afternoon!

The radiotherapy itself has been very 'efficient' (a word I've used a lot in reference to St Luke's Cancer Centre) and the process is all in all pretty quick.

After changing into a rather attractive gown, I enter a radiotherapy room. The room is much larger than I had originally thought, it was light, open with 'florence and the machine' music playing in the background. The hard bench is similar to that of the CT scanner, and when the lights in the room are turned off, green and red laser lights project from certain points in the ceilings and walls and align with my mini marker tattoos (see CT planning blog).The radiotherapy machine sits above the bench like a big lens.

With great skill, patience and some strength (to haul my heavy frame) the radiographers position me precisely with lasers, then leave the room while I'm zapped. On my first session I didn't actually know for certain when I was being treated. I learnt later that it was indeed when the buzzer sounded but it didn't feel like long enough!

The radiographers then pop back into the room, the large lens flips below the bench and the process is repeated from below, through the clear bench into my back.

Before I know it, it's over and I'm off getting changed and on my way! After 5 days I can confirm that it takes longer to get a cappuccino from the main hospital branded coffee shop!

I've been using aqueous cream on the sites which appears to be heading off any issues.

So five days down and ten to go....

Best wishes

Stuart

VII. CT scan post carboplatin chemotherapy

Dear All

I hope this finds you well.

On Monday evening (happy 4th July to anyone reading from the US) I had another CT scan, again with the iodine contrast agent (this time my head felt a little warm but I didn’t get any of the other mild sensations I’ve heard of).

On Tuesday morning I visited the oncology registrar to have the scans reviewed, following a pretty quick turn around. The registrar consulted with his fellow registrar and the consultant and all agreed my lymph node tumours have dramatically (in my opinion miraculously) shrunk following the carboplatin chemotherapy. The fact that the tumours had shrunk was evidence that the tumours exist and I should therefore continue with the planned radiotherapy.

The registrar was very kind enough to print copies of the scans, which I have as you see rescanned (hence the quality). However, pretty impressive to see my insides, I hope you agree.

Super news but as you may imagine a very emotional morning.

Best wishes

Stuart

VI. Blood results 14 days post carboplatin chemotherapy

Dear All

I hope this finds you well.

Friday marked 14 days since I received the carboplatin infusion and I had a follow up booked to check my blood count and ensure that all was going as it should be with this clever therapy.

The nurses in the phlebotomy clinic were on good form. Whilst taking blood my nurses suggested that I looked like a rugby player but not a famous one! I confirmed that I was once a rugby player but that didn't mean I wasn't famous for other reasons!

Anyway, I have again to praise the speed and efficiency of the oncology department as my blood results were ready after a short stroll and coffee. Meeting the nurse I was again armed with some questions. Why was I being requested to have a diagnostic CT scan on Monday when i'd only just had the planning CT scan the previous week - had they found something? Was I allowed to book a holiday in September following my radiotherapy and how long would it be before they would know if the therapy had worked? My chemo nurse went off to find the registrar to get some answers.

Firstly, I was delighted and I mean truly delighted to hear my blood results were very positive (white blood cell count 8.4 and neutrophils 4.75). You may recall from an earlier update that the St Luke's Cancer Centre is affiliated to the Royal Marsden Hospital in London and a review meeting of cases was held every two weeks between groups, with my case being selected for review. Evidently my original CT scan had been discussed and there was some dispute over the presence of the tumours on my lymph nodes and hence the rescan before I start the planned radiotherapy on Wednesday.

This news came as somewhat of a shock but characteristic of the journey I am on. I thank the Lord for the good blood results, with regards to the scan I can only plan for the radiotherapy starting on Wednesday and hope that the scan results are positive on Monday. I will meet the registrar on Tuesday morning and hope to learn more.

I have had some superb follow up from old friends, amazing response in prayer and just great comments on chateaumcguire.com - some innovative and exciting plans to raise some money for Cancer Research UK and St Luke's Cancer Centre - news to follow but do drop me a line if you'd to be involved ! Best wishes

Stuart

V. CT scan for radiotherapy planning

Dear All

I hope this finds you well.

I always wondered what the look on my Mum’s face would be the day I told her I had tattoos. The ones provided for radiotherapy planning purposes were so tiny that I was unable to get much reaction from my Mum or my wife for that matter. I have heard this tattooing business does worry some folk facing radiotherapy and I would like to dispel any fears. Firstly, the marks are so small it is difficult to show them off and secondly they are no more painful than a quick scratch and certainly no more painful than the many blood samples that one has through during this whole process.

Yesterday my wife and I met with one of the radiotherapy team to plan for this upcoming treatment. We had a number of questions; some intelligent (my wife’s) and some pretty whacky and trivial (mine). The radiotherapist did a sterling job, patiently and with some skill, answering all the things we needed to know and smiling sympathetically at my cautious concerns. I had originally been told that I would receive 20 gray over 10 days and I had shared that a friend in clinical research had felt that a little low. He looked at my treatment plan which had been amended and I was now due for 30 gray over 15 days. My questions, as with the chemotherapy, focussed around the side effects and my potential to be productive at work and attending each day. Like the chemo each person reacts differently, but the main effect is tiredness. Not sure how that compares to the tiredness of having a small baby but I’ll take it over the nausea from chemo.

I have been feeling much better this week. Pretty much back to normal, cautiously keeping a low profile, working from home (which has helped keep me keep mentally active at least) and avoiding infection (like avoiding the splash zone when you see Shamu at Sea World).

So this Friday I shall visit the nurse to have bloods following the chemotherapy to check my white blood cell count. I’ve just learnt of a further CT scan on Monday evening (diagnostic, I understand) and then the start of radiotherapy on Wednesday 6th. I admire the speed and efficiency of NHS through this process.

Thank you for the very kind messages regarding this blog and for the superb prayer support, it has kept me very positive indeed.

Best wishes

Stuart

IV. Carboplatin

Dear All

I hope this finds you well.

As you may recall, on Friday I started a cycle of carboplatin chemotherapy following my diagnosis of testicular cancer (which had moved up to the lymph nodes in my abdomen).

I was interested in the side effects I would experience as a result of the carboplatin and was told that it ranges from a strong hangover to being knocked out for several days, with each individual patient being different.

The administration of the chemotherapy itself was more emotionally draining than physical. I had thought long and hard about being attached to the IV drip and being given the cytotoxic agent, and was rather apprehensive. The chemo suite was well furnished and another chap was sitting next to me doing the suduko in his newspaper, attached to a drip receiving a colourless liquid (more about this chap later). With great skill, the nurse hooked me up to a drip and explained about the anti sickness drugs I’d receive during and post chemotherapy. My new friends were ondansatron, dexamethasone and metoclopramide (the latter drops down in dose and I’m still on it).

After the forty or so minute infusion, I was allowed to leave, together with my sickness tablets and a special chemo helpline telephone number. Before I had even left the chemo suite my seat had been filled by another chap about to receive chemo, such is the demand for the resources.

As a seasoned hangover recipient, I felt well equipped for this treatment. At first the side effects were quite mild; hot flushes, nausea; but after a day they stepped up to headaches, dizziness, tiredness, stomach pains, metallic taste in the mouth and then insomnia.

So, after 6 days I am now ready to sit in front of the laptop and am still having to be patient and wait to see if I will feel any further effect from the drop in my white blood cell count over the next week or so and if I’ll avoid infection. A follow up appointment two weeks post chemo will involve checking my bloods and hopefully meeting with the Oncologist to review my status.

Back to the chap I shared the chemo suite with. Ken, a 68 year old ex-military man and father of six was rather hoping for a quite session with the IV drip but was soon fully engaged in explaining his situation. Ken had started smoking at the age of 12 and had lost his wife to emphysema the year before. In his opinion you did not smoke for 55 years and not suffer the consequences. He had developed an inoperable lung tumour and had joined a clinical trial involving carboplatin and etopside. Ken was unable to tell me the details of his clinical trial, essentially I believe because he didn’t know. But he did know that it was a good idea and he knew he’d also benefit from 4 CT scans, an increased level of contact with the medical team than available on standard care, and this he felt would stand him in good stead. He also knew the statistics for 5 year survival and how long it would take for him to regenerate his lungs if he gave up smoking, yet felt that he would continue as he enjoyed smoking. This discussion was interlaced with reflection on how glamorous smoking used to be in the 60s.

Again, this has all been a very humbling experience. Chemotherapy was a scary word, in my opinion almost as scary as cancer itself. It’s not just physical but examines you mentally too.

Almost like clockwork the dates arrived for a CT scan next Monday 27th June, this scan will determine the position and plan for radiotherapy which will start on Wednesday 6th July.

I know I have been carried through this by Jesus, it could have been so much worse and for those who have prayed or sent their thoughts, I am very grateful indeed.

Best wishes

Stuart

Chromium 51

Just having my kidneys checked at the royal Surrey which involves an injection of isotope chromium 51, then nothing until blood samples at 1pm. So here I am at Surrey sports park drinking coffee and watching the USA national Rugby team train - doesn't get more random than this …

III. Options

Dear All

I hope this update finds you all well.

When I last wrote, around two weeks ago I had just had the Orchidectomy (removal of my left testicle) following the diagnosis of testicular cancer. It has been an interesting two weeks, initially overcoming the walk of a cowboy and secondly waiting with apprehension for the meeting with the Oncologist. I just wanted to thank you all for your thoughts, prayers and kind notes during this time - it has been very supportive indeed and I feel my family and I are very fortunate to have such amazing friends and colleagues.

I talked in previous updates of how humbling an experience this has been and none more so than visiting the St Lukes Cancer Centre at the Royal Surrey Hospital this morning.

St Lukes Cancer Centre is affiliated to the Royal Marsden Cancer Hospital and therefore the treatment protocols, training and communication follows that of the Marsden.

I met with the Registrar, a sharply intelligent and witty man who talked me through my diagnosis (stage 2a Seminoma testicular cancer) the options for treatment and possible side effects. He also reviewed the impact of my hereditary spherocytosis, possible infections and long term outcome. The Registrar was very positive that they intended to cure me (97% cure rate for this diagnosis, to my great relief) but the question was how, and ensuring the least side effects.

The options:

- 1 cycle Carboplatin + 20Gy radiotherapy in 10 fractions

- 4 cycles EP (Etopside, Cisplatin)

- 3 cycles of BEP (Bleomycin, Etoposide, Cisplatin)

Discussions suggested that the first option of Carboplatin and Radiotherapy was the treatment of choice from the Marsden and offered fewer side effects.

We were then joined by the Consultant, apparently the big boss in terms of testicular cancer at St Luke's; his manner was slower in pace and he reiterated the same points from as the Registar, with the addition that he would like to review my case at the joint meeting with the Marsden in 2 weeks. However, I should have all the preliminary prep, including banking of things that need to be banked, kidney tests and further bloods. Both Dr The Registrar and Consultant were superb, answering all the intelligent questions my wife had and reassuring me in simple words that everything will be fine.

For those that are wondering, this isn't the treatment course followed by the highly successful cyclist Lance Armstrong, nonetheless I do not think this will alter my chances of winning the Tour de France....

With treatment starting in 2 weeks or so, I look forward to being back in the office tomorrow, at the PCMG next week and speaking with you all soon. I am still rather keen to raise awareness of testicular cancer so please feel free to forward this update.

Best wishes

Stuart McGuire

II. Orchidectomy

Dear All

I want to thank all of you who have called, emailed and texted. Each and every one has been truly encouraging and I am so grateful for the prayers, words and thoughts you have shared. I have also received some inspirational notes from our clients who have faced similar situations. In addition I wanted to thank those of you who have introduced me to Lance Armstrong. I continue to be humbled by this experience and know I am fortunate to have such strong support.

So, I am now a little lighter on the left hand side and still in a fair amount of pain. My Urologist, visited me before the operation and on my leg drew a large arrow pointing up with marker pen with the word "LEFT" which was fairly reassuring to know they the correct one in mind! I had the procedure described to me, where they planned to remove via the top of the groin (or out of the sun roof) so they can take the full cord too.

What I next recall is waking up in a recovery room singing nursery rhymes and talking about the TV show "Mad Men" ? they seemed a little perplexed by my random conversation.

If you are squeamish you may want to move to the next paragraph. That night walking to the bathroom was one of the most painful experiences, the 5 meters felt like 5 miles. The Urologist visited me the next morning and explained that although the operation had gone well, my testicle had been rather reluctant to leave but after further tugging, pulling and extra anaesthetic they had been successful.

It's still rather painful to walk, bend, cough, talk loudly (of which I am accustomed) and I'm not allowed to pick baby Olivia up for 2 weeks, which is rather painful too.

So, hopefully that is the first chapter dealt with. The primary source is hopefully eliminated and I understand the histology is being analysed, reviewed and I will meet my oncologist Dr Julian Money'kyrle at the Royal Surrey Hospital in the next 10 to 14 days to discuss next steps. To be honest, this area is much more unknown to me and I'm really looking forward to having this consultation and getting on with the therapy.

I'm on a pretty strong regime of pain killers including Tramadol, Paracetamol, Ibuprofen but I know I'm progressing well and hope to be back working on Monday next week.

If I can perfect my John Wayne walk I will try to be in the office.

Thank you again for your amazing support and prayers and if you could continue please as I get to grips with this cancer business.

With all my love.

Stuart McGuire

I. Diagnosis

Dear all,

I hope this note finds you well and for those in the UK, still enjoying some rather good weather! You maybe aware that I was off-line yesterday and I want to thank all those who have sent nice follow ups. Following an initial ultra sound scan and CT scan yesterday (11th May) I was diagnosed with testicular cancer, which has moved up a bit to the lymph nodes in my stomach. This was quite a shock as you can imagine but after some reading from my amazing wife, it would appear the prognosis is fairly good with a high cure rate even considering the spread. I followed up with the doctors this morning and it seems that the size of the tumour on the nodes is smaller than 1cm.

On Tuesday afternoon (17th May) I will be having an operation to remove the testicle and will then have some follow up with chemo or radio therapy. Again, I understand the prognosis is favourable. On the work front I know I have great support and I’m very grateful for the best colleagues in the business. I will be on intermittent email and understand that I should be back fairly swiftly after the op on Tuesday. This has been a very humbling experience and it took some time to realise that it was me they were talking about when hearing the results.

My wife and I are very positive, however, we want to encourage all the chaps out there to have a good check of their manhood (perhaps not while you read this!) and for all you ladies to give their men a good check too... Finally, most will know that I do have faith in Jesus and my family and I would be grateful for your prayers. I am comfortable if you’d like to forward this note and very keen to raise awareness. I always wondered why men had two testicles and now I know why!

Best wishes

Stuart McGuire
Executive Director