Out of the blue..

I'd almost forgotten about my cancer blog.  It's a period of life that is somewhat thankfully behind me and the fact that I'm able to live a normal life with few physical reminders is testament to good fortune, good doctors/surgeons and support of family/friends, as well as resilience of the human body and mind.

I was reminded about my blog couple of weeks ago when contacted by David who is currently going through a similar story - same cancer, similar spread and similar failure of high-dose chemo and is now faced with lung surgery the same as me.....even from the same surgeon!   It's good to be able to help in some small way, even if its just answering a few questions, putting minds at rest about the prospect and after-effects of major surgery.  It's a journey into the unknown for cancer sufferers - the chemo, the surgery, the after-affects and there seems little first-hand information available to put minds and rest and give hope.

I recently watched an online video of a muscle-sparing thoracotomy operation similar to that I had.  Not sure it was a good idea as it's pretty major invasive stuff, but despite having two operations and seven bits removed from my lungs there has been no real affect on lung-function or life-style.  The pain from the operation is temporary but the cure in terms of finally removing the last remnants of active tumours was permanent.

As I write, David has just undergone his surgery and fingers-crossed it will be the only one he needs, and he too can look to the future and getting back to living.

Love & Support Are Priceless - Guest Post

I was asked by David Haas if I would host a guest post and am only too happy to oblige.

Love and Support Are Priceless

Love and support are priceless commodities, especially for cancer patients. For many cancer patients, they do not have people in their close network of friends who know exactly what they are going through; therefore, they turn to support groups to be surrounded by other cancer patients.

Support groups are not just for patients with common cancers like breast cancer or skin cancer, but they also can be utilized by people suffering from rare diseases, such as mesothelioma. Cancer groups are for literally anyone. They are for people who are in remission, people who have mild cancer and for people who just want a genuine perspective on cancer and how it affects people's lives.

These groups are more than inspirational to many people; these groups are life changing. Without them, many patients would have a rough, lonely journey. Patients in remission can give helpful advice to new patients, and new patients can learn things that only another cancer patient could teach them. Doctors do well to give patients all the technical information they need to know, but they can't offer what many patients really want: care and sympathy.

Writing about your feelings and talking about your feelings are therapeutic; they really help people understand themselves in a better light. Moreover, talking about your feelings can help your mind to ease and relax, which in turn helps the body operate more efficiently. When the body is relaxed, the organs and immune system can do what they need to do to help the body recover from intense surgery and radiation treatment.

Support groups help emotionally, as well. Every patient can lean on each other and be an emotional support for other patients. It is empowering to know that there are other people who are not only going through the same situation, but also strive to help keep other patients positive. By being optimistic, patients can help encourage each other, helping them to embrace anything that is thrown their way.

If you have cancer, or you know someone who does, find a support group that you can attend. There are even support groups online, where patients write to each other and join in on discussions. The love and support from these groups are priceless.

By: David Haas

3rd year and clear!

Well, its not been much of a blog of late, but that because thankfully there had been little to report.  My check-ups at the Royal Marsden had slipped to every 4 months.  My last visit was a couple of weeks ago and despite the usual slight trepidation and sudden conscious niggles and aches that always seem to appear in the couple of weeks beforehand, my tumour-marker blood-test and chest x-ray was normal.  I have a CT scan booked for January and then the Prof is happy that I can go down to 6-monthly check-ups.  Next month will be the third anniversary since my last surgery, so definitely cause to celebrate.

The trip to the Royal Marsden is always a salutary reminder of how many people are fighting their own battles with cancer, struggling with the mental and physical effects, coping with the stress and strain on their family and loved ones, and the courage and fortitude people shown in adversity.  For each good news story there are plenty of others less fortunate and we should all remember them.  Those who do pull through are an important inspiration for others, even they don't know it. Everyone needs that hope and realisation that people can and do get through it. 

I was lucky - testicular cancer has a high clear-up rate (approx. 98% if detected early) and chemotherapy has a high success rate (85%) even if the cancer has spread.  I was in a smaller minority with recurrent secondary tumours in both lungs and high AFP markers and my cancer became chemo-resistant but even so the survival rate for stage IIIc and categorised as intermediate-risk the 5-year survival rate is still around 80%. Three years down, two to go - I'll take those odds, and take each month/year as it comes.

......And Again!!

This week has seen the awkward few days wait between having a CT scan and getting the results. I trundled over to the Royal Marsden this morning to receive the news from Professor Dearnley that my scan was clear and the 'lump' which was visible on my lung from my last scan has actually shrunk slightly, which backs up the consultant's original view that it was probably scar-tissue from my last operation. It's now two years since my last treatment, which is a bit of a milestone having previously twice re-lapsed after 6 months, and the risk of recurrence is diminishing with each passing month. I think I need to treat myself to a mountain-top or two to celebrate!!

All Clear...Again!!

I had my follow up CT scan on Monday with the intent of checking whether the new 'thing' in my right lung has grown at all. I met Prof. Horwich at the Royal Marsden today and he confirmed that everything seems fine. My AFP tumour marker is still normal and the scan shows no apparent abnormalities in my lungs. They the believe the slight thickening on the edge of the lung picked up on the previous scan is probably scar tissue from my previous surgery - it seems to coincide with the area that I had a drain inserted into the lung.

Panic over! Thanks to all who crossed their fingers...again!!

John Hartson...our thoughts are with you.

I was shocked and sorry to hear the news that John Hartson, the ex- Arsenal, Celtic and Wales footballer, has been diagnosed with testicular cancer that has spread to his brain and lungs. I understand he has undergone emergency surgery to the brain and remains in critical condition.

I would like to wish John and his family my best wishes at this difficult time and hope they can remain positive and draw strength from the thoughts and support that everyone will give. John has always been know for his strength and fighting spirit and this should stand him in good stead.

I know too well the effect and shock of a sudden diagnosis but he is in good hands. There are so many unknowns but there are also so many experiences from other people to draw inspiration from, in the same way I did.

Unfortunately, its also a salutory reminder that this insiduous disease silently affects so many people, yet only gets media airtime when it affects somebody in the public eye. Every day around the UK there are people being diagnosed and we must ensure that we all do everything can to support the fight against cancer. For that I applaud efforts by people such as Lance Armstrong in his crusade to raise awareness through his LiveStrong foundation and also the efforts of thousands of people across the UK raising money for worthy causes every week, in their own little way. We can all make a difference!

The Verdict

Back to the Royal Marsden today to find out the results of this weeks PET scan. When the consultant popped his head round the door and said "I just need to pop upstairs and see the radiologist, I can't make head or tail of his comments!', I immediately feared the worst. How difficult could "all clear" be to understand? Clearly its wasn't, so I was left hanging for a few more minutes. When he did arrive he still didn't really choose his words that carefully. "The report said the scan showed there was some activity.." Ok, that's not really what I wanted to hear. "...but the scan results were amplified so much that everywhere showed some activity and the activity was deemed to be no higher than normal tissue, so the radiologist has concluded its a negative scan". That's good news! I know he was only trying to explain himself but he really couldn't have managed to give good news so badly if he tried!

The upshot is that I do have a nodule in my right-lung but the PET scan doesn't show it as active. It could be scar tissue from previous surgery or there is a type of my cancer (differentiated teratoma) that does not show on a PET scan. The plan is to have another scan in 2 months to see whether there is any change in size and if so I'll be under the knife again.

More bloody waiting but such is life on remission. Today's news is the best I could of had so I'm grateful for that. Thanks to all who crossed their fingers (and toes) on my behalf and any inconvenience it may have caused!!

Mixed News..

My latest meeting with Prof. Dearnley at the Royal Marsden was to review my recent CT scan and blood test. When he started with the words "It's mixed news..." I knew there was something not quite right. The blood test showed my AFP tumour marker to be normal, however the CT scan showed a nodule on the bottom edge of my right lung. This is slightly unusual in that each previous re-occurence of my cancer has been marked by an associated increase in my AFP levels - which thus far has shown to be a reliable indicator. There is a chance the nodule could be scar tissue from previous surgery or benign but I've been scheduled in for a PET scan to check. Back to the waiting.......should have crossed my toes as well!

The Waiting...

My consultants appointment has been put back to the 6th May, so I'll need to wait a little longer to get the results of my latest scan and blood test. Reckon I'll get cramp in my fingers if they are crossed for that long!

Quick Update

Haven't posted for a while as all's been well and I've been concentrating on my other blog.

I'm due my first post-remission CT scan on Thurday, back at the Royal Marsden.  As usual there's a little trepidation ahead of getting the results (which won't be for another week), but fingers and toes are crossed as ever!! 

A Mountain High

I've been contemplating the direction of the blog for the past few months. Conscious that as remission is progressing the posts have become less frequent.

Inspired by others blogs, I've re-discovered my passions for the mountains but rather than skew my cancer blog off in another direction I've decided to create a new blog, 'A Mountain High' http://www.amountainhigh.co.uk/ to chronicle my outdoor exploits.
This will leave this cancer blog truer to its original intent and ensure that its content is visible and accessible to others unfortunate enough to be going through a similar journey themselves. I'll add a link on the right-hand side to each blog so you can flick between them.

My cancer reinforced the need to make the most of your time, do the things you enjoy and not let life pass you by. Hopefully my new blog will help encourage and motivate me to do just that and if in any small way inspires others then even better.

One year and still clear!

On Friday I popped back to the Royal Marsden for a 2-month check-up which primarily relies on checking the AFP levels (a tumor marker which is used as an early indicator of cancerous activity in the case of my cancer-type) in my blood and which were again normal. There is always that awkward few seconds when you realise that the consultant hasn't actually checked you results before he comes into the room, and you can see him scanning down the paperwork to check the latest results. Thankfully they were normal, else his whole demeanour would have to change in an instant.

It was a bit of a milestone since it is now just over a year since my last operation - the longest time I've been cancer-free for 4 years (previously I've re-lapsed at 6 months, both times). Whilst I feel lucky, a visit to the RM is always rather sobering, particularly when I feel so fit and well and yet looking around you are instantly reminded what an insidious disease cancer is, affecting anyone and everyone, each all fighting their own battles, some winning and some not...

My check-ups are moving to quarterly from bi-monthly which means an extra month between having to worry about the results each time - there is a always a tiny bit of you which thinks 'what if'...but so far so good, and that's good enough for me!!

All's normal..

...and to cap off a memorable month, my latest check-up which I decided to defer till after the wedding was clear - tumour markers all normal!! Back to the Royal Marsden in November.

Quick Update

Ok, I know I've been remiss in updating, but the fact there is little to report is good news. Back to work, back to normal and haven't had cause to think about the 'c' word until the week before my check-ups. Had two more bi-monthly checks and tumour markers have been normal each time. The trudge over to the Royal Marsden does remind you of what you've been through and importantly is a visible reminder of how many people are currently being affected by cancer. It's sobering to think I'm sitting there feeling relatively fit and healthy, yet there are hundreds of patients, new and old, young and not so young who are coming and going through the RM each and every day, and whose prognosis perhaps is not so fortunate.

As for myself the outlook is one of cautious optimism, as Prof. Dearnley kindly puts it. My history of relapses is such that each clear test is a further milestone.

Just like to again thank everyone for their support over the past few years - I couldn't have done it without you all. It's good news so far...I'll take that, two months at a time!

Back to 'Normal'

Back to the RM last week for my first tumour marker blood test since the op. With the recent fire at the RM in Chelsea the Friday clinic, which is not well known for punctuality, was even busier than normal. Frustratingly, I never get my tumour marker results back on the same day, so seeing the consultant was largely irrelevant. He was impressed by the matching scars and sent me off for a chest x-ray which was fine, and also arranged for a CT scan in four weeks. He promised to call with my tumour marker result the next week. Guessing I would not hear anything and I would have to chase them up, I was surprised to receive a call last Monday morning. My tumour marker was normal (or to be precise, 7, with lower than 10 being classed as normal)!! The best news I could have hoped for! I'd already worked out that with the time elapsed since the op, if there was no other source of cancer, then my markers should have dropped back to normal, but hearing confirmation was the news I'd hoped for.

No real cause for rejoice just yet - I've been here twice before and relapsed but at this stage its the best I can hope for - I'll take that for now!

Been back to work for the past couple of weeks, which is another important piece in the normality jigsaw. Its taken a few days to get my brain into gear, I'm a wee bit of the pace after 8 months off - loads to catch up on (or nothings changed, in some respects).

We've booked a holiday to Dubai in Feb - my first holiday for a year. Fingers crossed that is - we don't have great track record of booking holidays we can actually go on for varying medical reasons!!

Thanks for everyone's support. Not out of the woods yet, but the path is a little clearer!!

"Make sure the scars match!"

"Do you know which bit to take out", seemed a reasonable question (if it were not for the fact that the Royal Marsden were involved). In May I had been aware of two lumps in my right lung - one appeared to be a nodule which had been there sometime, never grown and never appeared active and hence was presumed to be benign. The other had appeared recently and was the focus of my treatment. The subsequent chemo had apparently shrunk the tumour and at my most recent scan it was declared 'hardly visible' (which clearly makes it harder for the surgeon to find). When I was finally admitted for surgery I asked the surgeon if he had seen the scans - the response being a less than inspiring "I'm not sure", but at least he did march off to a computer and brought up my scans on screen. Flicking through the slices of the CT scan he could see nothing but a couple of areas of scar tissue, which he suggested were possible remnants of tumours, and then a small nodule further down my lung that I was pretty sure was the supposed benign lump. 'There it is - I'll whip that out", he declared confidently. I profferred that it may be the benign lump that had been there some time but to no avail. 'I'll take out anything I find" was his parting shot. Less than convinced I did try and contact the consultant from the RM but to no avail, leaving me wholly in the hands of a man I hoped had sensitive fingers.

"Make sure the scars match!" My final request to the surgeon prior to him dissappearing off to the production line, sorry, the theatre, in which he plays the lead role. I was second on his list for the day, leaving an awkward wait between waking up and being prepped, made worse by the fact I was nil by mouth and starving. It was almost midday before they came to take me away. I'd already decided on giving an epidural a go this time round (after deciding on patient-controlled morphine last time). The epidural line into my spine was the only one to go in while I was conscious...........

....woke up in the recovery area of theatre feeling remarkably lucid and pain-free. Then dropped off to awake in the High Dependency Unit about 7pm. Previously the morphine dulled the senses if not all the pain. With the epidural I was wide-awake and pain-free! It was working so well they reduced my epidural to half-flow to prevent my fingers going numb. Tough its doesn't work as well for everybody - the chap opposite was in surgery before me (same op, same surgeon) but was crying out in pain. At first I felt sorry, almost guilty that I was laying there feeling fine and he was in so much pain but as the night wore on my sympathy waned - I couldn't sleep because of his moans, poor chap. In the morning I was instructed to get out of the bed into a chair, a feat more easier than last time - the epidural meant I was far more mobile. After a few more lines removed from varying orifices I walked back to my room, unaided.

The surgeon confirmed he'd removed 5 bits of my lung which were sent for pathology tests. He'd had a good rummage (god knows how he managed to get his hands in) and basically removed anything that moved, or felt the slightest bit abnormal. I trust he left me with sufficient to endure a couple of minutes of physical activity at the very least.

It was difficult to gauge how much pain the epidural was masking. The nurses tested the extent of the epidural scientifically by placing an ice-cube on varying points on my back and checking whether I could feel it. Gradually the effect was reducing and the pain increasing to the point where two days later they turned off the epidural pump and swapped me onto morphine pills and two days later I was discharged, my main side-effect being one of constipation from the morphine. Yep, cancer is a pain in the arse!

....and yes, my scars match!!

Well they found it...!

..my brain that is. The MRI scan confirmed that I do (contrary to some people's misconception perception) have a brain - a remarkably well formed one at that! Oh, and from a tumour point of view the scan appeared to be clear, which leaves the small nodule in my lung as the only identified/visible active tumour. As it stands I'm still waiting for a date for surgery. Normal Royal Marsden service resumed when the surgeon never received the CD of my scans. After much chasing and hassling I managed to get a replacement disc sent, only for them both to arrive on the same day, 2 weeks after my referral! I was hoping to get in quick and be out in time to be relatively fit for Xmas but I should know better than to make plans...!

..another update.

Well I know it's been a little quiet this end - symptomatic of the fact that I'm currently playing the waiting game. My original date for the PET scan was delayed due to the scanner breaking down, which put me back a week. I finally had the PET scan last Wed and met with my consultant to review the results on Friday. The PET scan re-confirms the small tumour in my left lung is showing some activity but that the scan did not pick up anything else (or anything that's within the scanners sensitivity), so it looks like surgery is definitely on the cards. The week before I had asked about the chances of cancer spreading to my other testicle and a week later the consultant 'suddenly' suggested arranging an ultrasound scan of my 'bits' (which were clear) and a MRI scan for my brain - 'just to make sure'. The MRI scan is scheduled for today and I should get the result later in the week - thats presuming they can find my brain!

The morning after the weekend before...

Well I crossed my fingers but should have crossed toes as well. The CT scan showed the tumour in my right lung unchanged and my tumour marker has started to increase. The upshot is the high-dose chemo has not had the desired effect.  The view is that my cancer has become chemo resistant so they see no benefit in going through high-dose chemo and its own associated risk again - it's back to the surgery route as a last option.

I'm due to have a PET scan in the next two weeks in order to check there is nothing else to worry about and then I expect they will get on with surgery pretty quickly - same operation as I had in June but on my right-side. At least I'll have matching scars - it'll look like its where my angel wings have been clippped.

Update

Back to my favourite place today - The Royal Marsden for post-transplant check-up and a CT scan. The blood-test showed my blood has recovered remarkably and its essentially back to normal following the high-dose chemotherapy, which means they can schedule me in for the second lot - 2 weeks today! Thats dependent upon the results of the CT scan and tumour markers, which I'll receive on Friday. It's a strange thing hoping that they'll let me have another hit of high-dose chemo and another transplant - but its infinitely more preferable to them deciding its not worthwhile. High-dose here I come...fingers crossed!!