Wullie 2 - Cancer 0

Just a quick update.
Veronica and I went to see my oncologist on Thursday to get the results of my scan.
I'm in remission.
Basically my tumour is the same size as when I went into SCT and this means that I was definitely in remission going to transplant and nothing has changed since then. The mass is just solid scar tissue... and a lot of it.

I'm in the clear.

Now just 4 weeks of radiotherapy and we can hopefully put this nightmare behind us. I still haven't got an official start date for the radio so will be chasing that up on Monday. It should be starting in 10 days but Glasgow hospitals work on some weird time and date system that doesn't reflect the real world.

Scanxiety:-
1) Concern or solicitude during the time period between receiving a scan and waiting for the results which disturbs the mind and keeps it in a state of painful uneasiness.
2) A general feeling of shit-ness

This is where I'm at just now. In a state of "scanxiety"... a word that needs to be added to the Oxford English Dictionary. It is truly a shit state of mind to be in and, no matter what you do, you can't help but think the worst. Thursday can not come quick enough.

Also, whilst I'm on a bit of rant can I say that just because I'm no longer getting any chemo and haven't started radiotherapy yet does not mean I am back to "normal". Yes, I do look "healthy" but I am still battling serious fatigue and the side effects of the SCT... one of the hardest procedures a cancer patient can go through. Why do people expect me to be instantly better and able to run a marathon. Give me a fecking break here... it's only 56 days since the transplant and I don't get classed as surviving it until day + 100!!
Let's have a quick run down of the drugs that I have taken during 16 months of CONSTANT treatment.

ABVD
ABVD is named after the initials of the chemotherapy drugs used, which are
doxorubicin (pronounced docks-o-rou-bi-sin), which was originally called Adriamycin®),
bleomycin (blee-o-my-sin),
vinblastine (vin-blas-teen) and
dacarbazine (de-car-ba-zeen).

DHAP
DHAP is named after the drugs that are used in the treatment. This includes
High Dose Dexamethasone (pronounced decks-a-meth-a-sone), which is a steroid, and the chemotherapy drugs
cytarabine (sigh-tare-a-been), which is sometimes called Ara C, and
cisplatin (sis-pla-tin), which contains platinum.

BEAM
BEAM is the nuclear weapon of Hodgkins treatment. the drugs involved are
BCNU which is also called carmustine and mainly used to treat brain cancer. I have had my life dose of this drug in one go.
cytarabine (sigh-tare-a-been), which is sometimes called Ara C
VP-16 which is also called Etoposide (pronounced e-top-o-side)
Melphalan (pronounced mel-fa-lan)
(Bone marrow now dead so transplant to revive it)

This does not include the daily drugs I have to take in order to keep infection at bay and to prevent pneumonia and shingles.

I challenge anyone to take all those drugs in the same time period as me and feel "normal" as soon as you finish.
Go on. Let's see you do it.

We went to see Thomas the Tank Engine and Percy at the Bo'ness Steam Railway on Sunday. Good family day out and here are a couple of photos.
Erin and Rebecca really enjoyed their ride on Percy.

Toot Toot!

(Click the photos to enlarge)

Radio it is, then.

No messing about with the radiotherapist this time. In what turned out to be a very interesting meeting it has been decided that I will start radiotherapy in about two weeks. Yet again, as soon as I get my strength back, I'm going to go back to being knackered. I'd also better get my butt in gear and buy a new motor. I flogged mine a couple of days back and now I'll be needing one retty sharpish!
The consultant today spent the first 10 minutes of the meeting going through my previous refusal of treatment and basically tried to justify why I didn't get it. His heart wasn't in it though and it was blatantly obvious that if I had been referred to him then I would have gotten it. As he put it himself "Combined treatment for early Hodgkins is by far the best form of treatment.".
Yeah, thanks!
So the upshot of the meeting is that I'll have four weeks of rads to my chest alien and surrounding nodes. We're doing the extra nodes as seemingly Hodgkins works by "dripping" into adjoining nodes so if there is anything that has already dripped down from the mother lode it may currently be undetectable by modern technology so we'll just zap them in case. He was going to give me three but decided that seeing as my disease has been playing silly buggers they'll give me option 2 which is a higher dose over a slightly longer period.
I'm happy with all of this. I just want the specialists to chuck everything at me to make sure this doesn't come back. Stuff secondary complications. We'll deal with them in the future.

This also means that I now have to deal with three separate departments and keep each one informed of what the other one is doing. The NHS don't do interdepartmental communications! I'll also be "followed up" for up to 5 years by each department separately as well so even when I'm confirmed cancer free I'll be having hospital appointments coming out of my proverbial!

Chris, except a call soon. I'll be needing to grill you about your first hand experience!!

Day + 48

Any hope I had of falling of the cancer radar came crashing down today when not one or two, but FOUR hospital appointments arrived through the post this morning. The postie must think I'm at Death's Door! I've got a visit to see a radiotherapist tomorrow, a CT scan a week today and two visits to the bone marrow unit in Glasgow in October... one to do another marrow test (ouch) and the other for the result. Oh, and my routine onc appointment on the 24th August. It's busy having cancer.

I'm a bit apprehensive of the meeting tomorrow. If you've followed this blog from early on you'll know my feelings towards radiologists. I just know I'm going to go into the meeting on the full defensive and not let the poor girl away with anything. Worst still, if this is the pre-assessment crap that I've already gone through then I'll have wasted my time and will not be shy in making them aware of the fact. My Onc must have written a hell of a referral letter to get me in so quickly.

I just hope the treatment starts asap and they don't wait until Day + 100. I want it now whilst the bugger (if still around) is in retreat.

Day + 45

Wow! Day + 45 already and a good 5 days since I've written anything into this blog. The main reason for this? I've nowt to say! I've done jack and I'm getting very very bored. I was that bored yesterday that I ventured into the back garden and cut the grass. This might not sound like much but when you consider that my garden is on at least a 45 degree angle it probably wasn't something I should have done... but I wasn't going to be beaten. A job that normally takes me an hour took just over three but it's done now and I'm never doing it again. I'm going get a wee man in to do it for me.

Still no firm date through for my CT scan so I'm going to have to give my haematology nurse a bell on Monday to see if she can chase it up for me. I've not had another night sweat but I still want to know where I stand.

Kelly, I'll speak to you next time Veronica calls. I passed out last night. Doing the garden completely knacked me out. I'm achy all over. Veronica really enjoyed your "little" chat last night and I'm still fighting my way through cinnamon heaven!

Being in Limbo sucks!

Romanino Discesa-Limbo Pisogne

Being in Limbo truly sucks. I don't know how other folk cope with it but I seem to be having a pretty hard time of it right now. It all started two nights ago. I had a night sweat. I've never had one before but it is a common 'B' symptom of The Hodge so my first thought for someone of my pessimistic nature is that the auto SCT has failed and that the disease is back and progressing. I've been fighting a head cold for the last five days and the night sweat was probably the last throws of that infection (and it was a warm night in Scottish standards AND I'm temperature sensitive after the SCT) but all the confidence I had has evaporated into the ether.

I get a CT scan in a couple of weeks but that is really just to get a base line for the future. In all honesty it'll be another four or five months before I know what is going on; that's when I'll get another scan. I don't know how I'm going to last that long. The CT scan I'm about to get won't really tell me much unless the mass in my chest has grown... that'll tell me a lot!!
The ironic thing is that I'm not looking for there to be any change in mass size. My onc says if the mass is the same size then it is 100% scar tissue. If it has shrunk back a small amount it is probably scar tissue that has just naturally shrunk back. If it has shrunk back loads it means I wasn't in remission going into SCT after all and that the BEAM chemo has killed of more (hopefully all) disease. We then need to wait for the future comparative scan. Follow all that??

Please God, don't let it have grown.

Candy, anyone?

Meet Kelly.
Kelly is over at Chemopalooza, is a fellow Hodger and my joint biggest Cheerleader in the States along with Susan (LauLausMamma) and Peggy in sunny Huntsville.
Kelly is a star.
Today Veronica and I received a parcel from her. It contained candy... an awful lot of candy.

Nine pounds of candy! I think shipping the box cost more than the actual sweeties inside.

Here is a break down. There is a cinnamon theme as that is my dominate taste sensation.

Mentos
Sour Patch soft and chewy candy
Peanut Butter M&Ms ---> gorgeous. The girls love them but Veronica has claimed them
Big Red chewing gum
Twinkies
Hot Tamales
Cinnamon Tic-Tacs
Altoids Cinnamon ---> very strong
Altoids Cinnamon wrapped in dark chocolate
Pop Rocks
Stretch Island Fruit Co. Original Fruit Leather
Ferrara Pan Red Hots
Dentyne Fire - Spicy Cinnamon
Market Pantry Cinnamon Disks
The Simpsons Fruit Snacks for the weans... and they love them!

and a lovely card.

Kelly, thank you very much!!!
That weight I lost during SCT is already coming back on. It's going to take us weeks to munch through that lot!

And those Altoids really do blow your head off.

Oncologist meeting yesterday.

Yesterday I had my first real follow up meeting with my oncologist and haematology nurse since I finished DHAP! It was a so-so affair with some things unresolved.
Some good points to come out of it were:-

• They were both delighted with my progress. "One of the best at this stage post transplant"
• Bloodwork was OK so no need for transfusions. Haemoglobin was down slightly so I just need to watch how tired I am.
• I'm getting an early CT scan (in the next fortnight) as my Oncologist is desperate to know what is going on in there. I'm really pleased about this... it'll hopefully give me some answers and get me out of this state of limbo.
• I'm NOT getting a PET scan. My Onc has lost all faith in them and is going "old skool" with me. They will monitor me for clinical progression for disease... ie things getting bigger... rather than lights on a PET scan.
  
• I can return to work but was advised to wait for the results of the CT scan so I will. I will know the results on 23rd August.
• I'm now free to roam where I please. Go to Gala Days around here and go to the picture house to watch The Simpsons Movie. Woo Hoo!! as Homer would say.
• My shaking and numb feet are neuropathy
• I've dropped some drugs so less to take!

The bad point was that I still don't know what is happening with radiotherapy. My Onc is desperate for me to have it. He doesn't want it to come back and feel that we haven't given it everything we've got. He's writing a referral letter to the radiologists and wording it in such a way so that they'll be culpable if it returns and they've refused me radio again. We'll wait and see.

Finally, I'm famous in the world of Scottish Haematologists and Oncologists. Seemingly my case is discussed in the seedy bars and clubs (and official meetings) where these people meet. It's brought up whenever two haematologists cross! It would appear that no-one can quite believe that I had to go to SCT. I was text book Nodular Sclerosing Hodgkins Disease and should have been cured first time around. My response to ABVD was excellent. The blame has been put squarely at the feet of the radiologists who refused me treatment.

Hopefully some good will come out of my ordeal and it will never happen again. I sincerely hope that the "It's only Hodgkin's" attitude that these radiologist have (the one I spoke to certainly had that attitude) has now gone and they realise that Hodgkin's kills. It might not be as aggressive as lung cancer but IT KILLS!

Day +38