Meeting Dr. Haynes

This is virtually lifted from my face book site but it explains it the best so I may as well use it! That is me on Christmas Day, before the Steriods took hold and made me fat!

My tumor is a sizeable one, I’ve always known that, football sized they told us to start with and all the chemo so far had failed. Dr. Haynes reiterated this to us on Christmas Eve 2007. He said he was worried. 80% of people respond to RCHOP, 85% of people respond to IVE if they don’t respond to RCHOP. I had responded to neither. The 5 year survival rate for people who responded to RCHOP was 90%+, for those that didn’t, that survival rate dropped, essentially my chance of a cure, dropped down to 20%, this went up to 30% if I could get a Bone Marrow Transplant (BMT). Not good odds. Thats me and Becky on Christmas Day.

When I met with Dr. Haynes my symptoms were all back. He gave me some high dose steroids (20 tablets a day plus all my others!) to get me through Christmas as I didn’t want to start treatment during Christmas and he agreed that it would be good to spend Christmas at home. Nottingham is one of the best Lymphoma centers in the country and the staff and consultants are second to none.

The doctor said, he works on everyone elses difficult cases and mine was a difficult one in comparison to them. He was pleased at how together I was and how I took the news but to be honest I think I was just in shock! He gave the NHL a very specific name, one that’s more prevalent in women than men and also in people under 40 but the name itself passed us by in all the info!

Next he explained the plan from then on….it was to start on GEMP, new drugs, new regime. I would have the Gemcitabine the following Friday as an outpatient, the same the Friday after that and on Day 15 I would have the Gemcitabine followed by the Cisplatin along with a lot of fluids and I would need to stay in hospital overnight for this part. I also had steroids as part of this regime and they kept my awake a lot and coming off them can be annoying as you can get mood swings. We were told this regime on me had a 50% chance of working. I also had a blood transfusion with my first lot of Gemcitabine as my counts were low. It was no big deal, I sat in a chair and they put blood through a drip. Boring really!

The plan was to collect stem cells from the GEMP, even if the GEMP didn’t work but they got Stem cells it would be a positive thing! A stem cell collection is just like collecting blood which then goes through a machine – takes out my stem cells and puts everything else back into me. No pain – just boring as it takes 4 hours and you can’t be unhooked! This would be done after the 2 week cycle when I am producing enough stem cells. The pic is me, dad and becky messing around with my Buffs sometime in the Christmas Holidays.

My only chance of a cure now is a bone marrow transplant using someone else’s bone marrow. Ideally this would be my sibling – in my case my sister Becky and she was tested immediately. It is safer and less risky if it’s a sibling but there’s only a 1 in 4 (25%) chance of her being that match. If she wasn’t a match we were told we would go to the national register. There was a good chance of finding someone on there. In the meantime they could give me a stem cell transplant using my own cells or if they can’t collect any from me for a number of reasons use someone else’s or give me high dose chemo. This wouldn’t offer a cure and I would almost certainly relapse but it would buy them time to find a donor if Becky isn’t a match. They can also use different kinds of chemo and high dose chemo which would blast my tumor but would destroy my stem cells and at that time they don’t want to do that but they were alternative options.

We were told on that day that they are still aiming to cure the cancer. If you get to 5 years in remission (no sign on cancer in the body and none for the previous 5 years) they can class you as cured. If they can’t get a cure they can offer what they call palliative care which is treatment to control the disease for some time, essentially different types of chemo etc - eventually the disease will overcome this and that is when they turn to just controlling any symptoms I have which is essentially a terminal prognosis. Scary stuff. Lets hope we never get here. I guess though u never know. I could be cured, I could not be - It’s a gamble. And it is something you think about – you cant help it.. I cried a lot but I think the steroids helped keep my spirits up at the time. Also I am positive, you can’t be all the time, its impossible but I was positive at the time.

I posted the following on an update to my friends at the time when I was told all of this regarding positivity:

Although I absolutely 100% appreciate all the messages from people please try not to say ‘Keep positive or keep your chin up’ because I hear this everyday from lots of different people and I already know this and to be honest it gets to the point where I get annoyed and I really don’t want to get annoyed with people especially when its not their fault. If you’ve said in the past don’t think I’ve been offended – chances are I haven’t – it’s just that nowadays its something EVERYONE says and it gets irritating! I need to be honest with people because that’s the only way I can be. If you don’t know what to say tell me! I would much rather hear ‘I don’t know what to say’ than something that doesn’t make sense or nothing at all. And if u feel too uncomfortable saying anything that’s fine. I’m not going to get offended or anything! With regards to uni, this is when I really decided that I probably wouldn’t be returning in September and I told my friends this. I may return in the future but I don’t know if I will and I have no idea when. Its something I can’t decide right now and I will have to decide when the time is right. That pic is me with my covering of hair before it all came out and grew back all stubbly like it is now!

So that brings me up to Christmas Day which in the circumstances was ok, it was a little bit weird cos you can’t help thinking ‘where will we be this time next year’ but it was a nice family day, I saw my Nan and Granddad. Although my Granddad wasn’t too well. He had emphysema and has been ill for a while but he’d been ok but a few days earlier had developed a thrush infection so he wasn’t too well when we saw him but it was good to see him all the same. Also Becky was home for 4 weeks which was brilliant and I miss her now she’s gone back to uni. But Christmas Day itself was nice. We watched tele, opened presents, ate Christmas dinner and I got my taste for chocolate back! Thats me and Becky posing one day in the holidays.

But Boxing day came and with it more bad news…though it was nothing to do with my illness…