Thymoma anyone ?

Thymoma bashing

2011-07-18T18:53:37Z

Found out this AM at my Addenbrokes appointment that the octreotide jabs I have been on for the last 3 months have been working as planned! Last few weeks have been a little scary as this was Plan B .... however apart from a little more localised pain my thymoma has taken the hint and is on it's way back to where it was end of last year. My fight is now a war of attrition - octreotide is more of a stealth weapon than chemo - but anything proposed by Addenbrookes and Papworth is Heaven-sent. They are truly miracle workers. As always, more than happy to help anyone ... my specialist subjects are tagged below ..... All the best to all, Richard.

Round 3

2011-06-13T19:22:15Z

3rd dose of octreotide today. Last 8 weeks have shot by. CT scan in a couple of weeks to see how it is working. It has certainly done something .... even if only to extend the hand of hope. Whilst I accept my lot as a 1 in 3 with some (twisted) amusement (ok, thymoma is not so much of a rib-tickler any more but I'm sure there is some new material out there ...!), there is no way I could handle things without those life savers in Addenbrookes and Papworth. They are truly stars. Richard.

Round 2.2

2011-05-30T21:27:08Z

Had my second octreotide jab recently. Side effects? What side effects! If a drug does not qualify you for a Kojak re-make audition then it really is not trying hard enough .... Reality check is that it was designed for ailments way worse than mine and I am just fortunate that it causes significant "collateral damage" to thymoma. Been some time since I was in treatment the first time, and it is humbling.
My thymoma is definately alive .... but I'm sure that it is being gently encouraged to return to Hell. Octreotide is a bit more stealthy in it's approach, and the proof will be in the scan in a month or so. But I've also taken both barrels from a sawn-off loaded with cisplatin ... much as I loved it though I think I can wait a bit longer before that particular repeat.
Always willing to help anyone I can.
Richard.

Round 2

2011-02-15T13:33:04Z

Been a good 12 months or so. Celebrated my first year of being back full time at work - after being out for all of '09 - last week. Been charging around flat out and am loving it.

Had to request to pull ahead my latest check up at Papworth due to some nagging discomfort over Christmas though ... and suffice to say the lurgy is no longer lurking in the shadows. Not the main nasty this time - but his little friend is up and running - so looks like it is play time again ... Just a little poke in the ribs so far, but hey, can't be ignored so time to do some serious cancer bashing again.

Good thing about thymoma is that it acts slow ... it caught me out before but this time there should be plenty of time to call on some serious fire-power. First weapon of choice this time is an octreotide / scan combo., courtesy of those great people at Addenbrookes, to see if there is a non-chemo way of handling this relapse. Hope there is, because much as I love cisplatin I think I have had my fill of it ....

That will be next week's delight ....

Richard.

Out patients time again

2010-11-10T17:58:37Z

At Papworth yesterday late PM. I was the one trying to forget where I was taping away on an iPad in case anyone reading this was there also .... Two years to the day when I first collapsed, one year since I started back at work part time, and now nine months since I returned full time. Appointment was good, and the world is good. Thymoma still there but slowed right down. It'll be back with a vengeance some time but I bashed it once and I know my enemy well .... Thoracic Outpatients is hardly my favourite place in the world but the Team are life savers. More than happy to help anyone who may be on the same path - my bio is accurate re the chemo I had and more importantly how to shake it off. All the best to all Richard

One year post-cisplatin

2010-07-16T19:30:31Z

Been just over a year since I kicked the cisplatin habit. Can honestly say that not one part of me got on with it in any way - but it can sure kick some serious cancer butt.

Towards the back end of last year I was able to be objective about things - all I can say now is let that WMD do it's thing. There are no guarentees - and as it never signed the Geneva Convention be prepared for some collateral damage - however it is well understood and no reaction you have to it will be a surprise to the Doctors ...

Seriously though, I have just had my one year post treatment appointment at Papworth. Appointments now less regular (ok 3 months to 4 months but who cares ?!), and now only one scan a year. I've always got there early, never complained (daft thing to say really as they are truly life savers), and both get on well with and have absolute confidence in my Oncologist and his team. I have no idea of my prognosis - but my thymoma is still dormant so life is good. Every month further solidifies my position on that probability distribution of life expectancy - and that is ok by me.

A few thoughts on recovery and long term impact of chemo:

It takes the same amount of time that you were on chemo. to even contemplate normality. You will know when you are better.
When you go back to work, only handle a couple of days and if you comute (especially to London) travel outside the rush hour. The escalators on the Tube are a killer
Take at least two months on reduced time
You will feel bitter - looking around an office and thinking "why me" is completely normal. Just remember what you have been through - there is no one else you can see who has anything like the strength you have
You will be shattered - perhaps more than when you were on chemo.
Think very hard before you go back full time. I have been working full time since the beginning of February and have only just about got myself to a physical level that thymoma allows me to be at.
Chemo can mess up your immune and digestive systems. I am actually less prone to infections than I have ever been (that is more because thymoma had weakened me over time pre-treatment) - however when one gets through it does hit me hard. Re digestion, it's more a case of think before you eat - don't hold back but you will be more prone to minor "upsets".

I have got though all of this by being very "matter of fact" - and I apologise for how I may be coming across - but that is just me. From the moment I was first "drained" after my thymoma went well and truly critical (well you have to lose something first to make room for the treatment ...) I have tried to understand exactly what had / would happen to me from an engineering perspective. Sounds perverse, and yes I have been to some very dark places in between, however technically understanding the interactions between the tumor, chemo and the rest of me has (for me) been a comfort.

There is no cure, and I know that sooner or later my condition will require a further "seeing to" with an ever less effective toolkit. But, again, I know I am in good hands.

And I guess that comes to my real regret in life. Since I first logged on to this site end of last year I have been appalled at the variable (could use stronger words here ...) level of service the NHS delivers to different people. There is no excuse - as there are some outstanding models around for the rest of the NHS to follow at very little expense. My own experience is with Papworth and Addenbrookes - and to me they have been outstanding. I could not even attempt to express my gratitude to them.

I am more than happy to help anyone in any way - and can easily drop back into "objective mode" re what to expect, how to cope (Del Monte now do pineapple flavoured ice lollies - they can certainly drill through that metallic taste!), etc.

All the best to all

Richard.

Slowly back to the daily grind

2009-11-07T11:29:07Z

Spent two days in work this week, and will very gradually ramp things up over the next couple of months. Only catch is I keep thinking I can do more than I actually can ...

I find that I am getting a little breathless again because I am scared to breathe deeply in case it hurts (it used to - not any more though thanks (?!) to 6 litres of cisplatin). Have been advised to take up Yoga to try and fix this - I must have been carrying the condition around for many years as taking shallow breaths has become the norm for me. But this is a minor irritation ...

Sad to see the site can be abused - there are ways of locking it down (e.g. restricting access to those who have been "screened" by Macmillan, etc..) although could be seen as too draconian (?).

All the best to all.

Richard.

Who said food and chemo doesn't mix ?

2009-10-28T08:02:59Z

http://news.bbc.co.uk/1/hi/health/8328377.stm

I always new that only being able to enjoy Indian food during my chemo sessions was actually a good thing ... !

A good day

2009-10-26T20:35:14Z

Have to be honest - every day is good since perhaps beginning of March. Last year was horrible - walking 10 paces left me struggling for breath - then I was diagnosed which was even worse. And then ... the treatment started.

When the chemo began to "kick in" and it's effects began to eclipse those of my thymoma (ok - the "unexpected" emergency admission to Papworth in Feb may have done something to help also ....) the world began to look good !
When the chemo wore off and all I am left with is a cough due to slight pressure on my left lung from the "nasty" that is still there I was happy...
When I realised I could rush for a tube train I never thought I could be so happy (ok, that is also a bit sad !)
When I look back and see the last year has been but a blurr ....

Then today I met with my company's occupational health rep. and have worked out a back-to-work plan. Suddenly I realised how lucky I am in many so many ways.

I only hope that I can help as much as I have been helped.

Richard.