Living with SCLC

Happy New Year (a bit late!)

2011-01-03T20:31:50Z

Well I've made it to 2011 and had a really good Christmas with all of the family and celebrated the New Year with a minature bottle of Jamesons!!. Had a hangover this morning! Watched the London fireworks on TV - quite impressive.

Felt quite good since Xmas apart from the cold I can't shift. Started my new chemo this morning so writing this now before side effects kick in (ever the pessimist).

Radiotherapy on neck seems to have helped a bit so not sore all the time.
Don't need to comb hair anymore - gone.

Best wishes and good luck to everyone.
Come on 2012

Radiotherapy

2010-12-10T13:11:00Z

Went for MRI Monday morning. Was struggling to get there as shoulder and neck were killing me and even the oramorph wasn’t helping. Anyway got a pretty thorough scan of my spine.

Went to Clinic yesterday (Wed) and was struggling again and had to ask for somewhere to lie down as that is the only way to get rid of the pain.

Saw my oncologist who said that there are 2 trapped nerves (between vertebrae) at the top of my spine and that they were planning radiotherapy and also thinking about it for my head. But since I was getting worse and unable to control it she went off to speak to radiotherapy people and they came straight to see me.

They also offerd me a bed so that they could concentrate on controlling the pain but I declined. If I can't control it myself they said to ring and they will admit me.

The result is I started radiotherapy yesterday and will get five sessions on my head and neck. (T,F,M,T,W). They also gave me some high dose steroids for my neck/shoulder pain and they have already made a big difference. See oncologist again next Wednesday and we’ll discuss more chemo then.

Can’t complain about the speed they work at or the attention they’re giving me. (Freeman Hospital)

Mo - I was gouing to ask about WBR but they beat me to it :)

PS will definitely lose hair now.

Steve

Back to square one

2010-12-02T20:16:40Z

Had a scan on Friday. Got results yesterday.

Went in to clinic expecting good news as I have felt so well. Came out thoroughly depressed.

Chemo (Cisplatin Etoposide) has stopped working on some of the tumours and others are appearing. Some are still shrinking. It looks like they are going to decide to stop my current chemo and they are considering an alternative chemo called Topotecan. Or, they might give me radiotherapy on some of the tumours. The one in my brain seems to worry them the most as its growing quite quickly (now 24mm). Its worrying me just a bit to!!!!

Anyway – they’re trying to get me in for an urgent MRI so that they can see why my neck is giving me gip and they’ll decide next Wednesday what happens next.

I know everyone says that you have to stay positive but sometimes its reallty hard.

Steve

Fourth Round

2010-11-18T11:12:55Z

Eventually I got my fourth round. Apparently my bloods still were a bit odd so they phoned the Consultant to check and she decided she wanted to see me before she made a decision.
So after arriving on the ward at 11a.m. I had to wait until after 6 when the consultant finished her clinic before she could see me. The upshot was I had an elevated kidney enzyme result which they were concerned about but as otherwise I was well they agreed to go ahead.
I got out at 11p.m.
I'm not complaining - clearly they did everything as quickly as they could and everone was really nice.
Plus I got two hospital meals for free (is that a plus?) and I was offered a bed for the night if I wanted it - no thanks!!
Another plus is my chemo dates have all moved a week so I should be OK for Xmas.

Steve

Chemo Postponed

2010-11-11T12:44:01Z

Went for chemo today but it was postponed because my neutrophils are too low. Aparently even lower today than on Tuesday when I had a pre chemo blood test. It figures because I haven't felt too good for 4 or 5 days. Might get it on Sunday.

Steve

How do people deal with it?

2010-11-01T09:04:30Z

I frequent various blogs and forums and I've been struck by the different ways people use to cope with their problem. The most extreme seems to be those (both patients and relatives) who completely deny or ignore the problem. There are quite a few who have a close relative that refuses to acknowledge and certainly will not discuss the problem.

This got me thinking about how I am dealing with it and I realised that I am the complete opposite.

When a young close relative was diagnosed with cancer I read and researched everything I could until I new as much as possible about the causes, treatments and outcomes. I've done the same with my own Lung Cancer - I could now probably give seminars to experts :)

Although I never realised at the time this is how I used to manage stressful situations at work. I would research the issue until I felt I was armed with enough knowledge to take on all comers.

Bit of a ramble - sorry!

Steve

Third Chemo

2010-10-31T20:27:08Z

Well it's taken me over a week to recover from the last chemo. Just couldn't get going again but I'm OK now.
Even though I'm not losing weight I've started losing muscle tone particularly on my left hand side - I always thought it would go quite evenly. My left arm and hand are noticably thinner than my right. Might get a job in a circus if it continues. Pulled all the muscles in my neck lifting up S a few days ago, presumambly because my muscles are weakening but now that I know I'll have to be more careful.

I'm probably tempting fate but I would like to say that everyone who has said that they will do something for me has done it and when they said they would, the Macmillan people, District Nurse, Clinic staff etc. hats off to them and the NHS who most work for.

Hair still hanging in there - come on you folicles!!
Steve

A little bit of being normal

2010-10-18T14:52:12Z

At last we have managed to get back into our old routine. Babysitting the granddchildren. Visiting family in Yorkshire. Going out for a meal and having a drink. Long may it continue!!

Going on chemo really stopped me wanting to do anything but I'm over that now. Chemo again on Thursday.

Scan Results

2010-10-13T18:23:12Z

Went for CT scan on Wednesday. Went for clinic appointment today and got results.

Tumor on lung, central lymph glands in chest and liver have all shrunk - so that's really good and I will now get more chemo.

Tumor in brain has grown slightly - now 9 mm (was 7 mm). Might have grown before I started the chemo. So they have decided I will get another CT in six weeks rather than twelve to check what its doing.

Also got results of bone scan that I had a few weeks ago. Apparently they always can't tell the difference between cancer, breaks, arthritis and things but signs of something on left rib, right hip and middle of spine.

So - like i say a mixed bag but the important thing is the chemo is working so I will continue to get it.

Considering I originally went to the docs because I had a cough...................!!!

Overall I feel really good - better than I have for weeks