Now, maybe, the English led sports media will take a reality check.

Day + 146

Hey! You know what really grinds my gears? Tiredness... and not just any old tiredness. Man, I am cabbaged. I just cannot seem to get out of the cycle of fatigue that I am stuck in. I'm on a one day on one day off routine right now and it is annoying. I go back to work next Monday (on a phased return; 3 days a week) so I'm hoping that might knock me into shape. I've been working from home these last few days so my brain still works... which is a bonus.

You know what else grinds my gears? People telling me I look great. I can't tell if people are talking about the amount of weight I've lost or the fact that I look better after transplant. I suspect for the majority of people it is because I am thinner. and the shallowness of that actually hurts. Not one person has ever said "You look great but how do you feel?". I feel shite, by the way!

The final thing that grinds my gears?
Depression.
I haven't been this low since my collapse at the end of SCT. Talking to my onc nurse a couple of weeks ago lifted me out of it but I'm afraid I've let myself sink back in. I see her again tomorrow so maybe she can give me a lift again.
I now suffer from many side-effects as a result of all my treatment:-

1) Severe fatigue... as moaned about above.
2) I can't feel my toes unless it is cold and then they hurt like hell. This is called neuropathy.
3) Lost about 60lbs coz of SCT and radio
4) Still can't eat properly and need morphine every now and again for throat pain
5) My hair has turned black and I need to shave my back! I'm turning into a silver-back mountain gorilla.
6) Paranoia about twinges in my neck
7) Veins are hard as rock.
8) Chemo-brain
9) No tolerance for trivial matters.
10) Depression... the worst of the lot.


On much happier news all my bone marrow tests came back as good or excellent. I have no sign of pre-leukaemic cells, the stem cells have engrafted nicely, my bone marrow is functioning as it should be at this stage and there is ZERO sign of The Hodge. It couldn't be better really.
Veronica and I have book our wee trip away to Boston, MA next year. We arrive on the 26th June for 7 days and are really looking forward to meeting the people who have helped us during our difficult times. We'll obviously miss the kiddies but will enjoy our first taste of freedom since Erin was born as best we can. Getting travel insurance is proving difficult but I just need to find that specialist cancer one!!
Talking of the weans, they got a mention in the Lymphoma Association quarterly newsletter. You can check it out here. They actually raised over £2100 pounds when you include the amount my company raised but for some reason they ignored everything my work did! The newsletter is actually a pretty good read so please have a look.

So, apologies for the fairly down post. This is probably why I haven't updated for so long. I'm now just keeping my head down and focusing on the trip to the States. It is giving me something to really look forward too.

Day + 120

I forgot to let you all know how my Bone Marrow Aspiration and Trephine went. It happened last Friday and was my fifth one in total.
It was fine.
There was hardly any pain at all this time around. Dr. Katrina was perfect and I'd had a whack of morphine earlier in the day so I think that the combination of an excellent doctor and drugs did the trick. She had a brief naked eye visual examination of the cells recovered and was very happy with them saying that "they look very healthy and there are an awful lot of them". This hopefully means that the engraftment of stem cells was a complete success

I thought I'd explain exactly what this procedure is.
First you have a local anaesthetic injection into the skin over the biopsy site - usually your hip bone - to numb it. When this has worked, the doctor puts the needle in. For a bone marrow aspiration, the needle is quite thin. For a bone marrow trephine, the needle is thicker. Either way, the doctor needs to put the needle through the skin, into the hip bone and into the centre of the bone, where the marrow is. If you are having a marrow aspiration, the doctor then sucks a cubic millilitre of bone marrow cells into the needle. You feel a sudden, sharp pain when the doctor starts drawing the bone marrow cells out. If you are having a trephine biopsy as well, the doctor will take this needle out and put the second one in.
If you are having a trephine, the doctor will turn the needle back and forth (hard!) while pushing it further into the marrow. The aim is to get a one or two centimetre core of marrow out in one piece. Once it is in far enough, the doctor will draw out the needle, containing its core of marrow. The needle going into the hip bone can be painful, but it doesn't last for too long. The core is then placed in a solution and looks like the worm in the bottom of a bottle of good tequila.

So, I'm still not eating, although I can manage lightly boiled eggs mashed up in a cup. I am being weaned again!
I am going into the office tomorrow to have a full and frank discussion with HR and my boss about when I should return to work. I'm not up to it right now. I know my GP has written a report so it'll be interesting to see what that says.

Finally, we are setting the wheels in motion for our anti-cancer visit to Boston. We have settled on the 26th June to the 3rd July and have picked our hotel. It's just a matter of getting flights now but things are slightly inflated due to the 4th July celebrations. I'm sure we'll find something.

Veronica and I (and the weans) went to see my Super Doc today. I haven't seen him in over 2 months so it was high time we touched based. Fortunately Wonder Nurse was also kicking about so I got alot of emotional and psychological garbage off my chest... which was nice. I'm arranging to have a few more one on one sessions as my mental health is not the greatest at the moment and I know it is worrying Veronica.
Anyway, all my blood work checked out OK again and I passed another quick "prod test". The rest of the consultation was just general chat and what to do now. I'm not having another scan until after Christmas (Woo hoo!) as my oncologist doesn't want to see "a large, shrivelled up dead tumor during the festive season". We're really pleased about this as it means we can just concentrate on the weans and not having me panicking about results like I was last year... it made Christmas suck. Also, I haven't heard him talk this confidently about my condition for a long time and it was nice to hear it.

Anyways, off to Glasgow tomorrow afternoon for my final bone marrow aspiration. Can't say I'm looking forward to it but it's the last one so let's just get it over with. This BMA is to see how likely or not I am to develop Leukaemia later on in life. I get the results in November.

Radiotherapy is not the easy option!

Contrary to widely held beliefs, mine included, radiotherapy is not a stroll in the park for everyone! Today I gave into my throat pain and went to see my GP as I couldn't get through to a specialist in Glasgow. The advantage of seeing my GP is that his brother is my Stem Cell Transplant consultant so he can use the old boys network to get me the info I require.
After a thorough examination where everything was poked and prodded (no hard nodes... yey!) my GP decided that specialist advice was indeed needed and so sent me on my merry way whilst he worked his magic.
I'd just got home when he called to say that he had gotten through to my radiotherapist (someone I have yet to see) and that the intense pain is to be expected due to the area of therapy. I should have been given morphine at my last appointment in Glasgow... whoopsie! My GP has now given me the morphine (take 4 times a day) and told me that the pain should peak on Friday / Saturday and that it should be plain sailing after that.

Hopefully I'll be able to eat something early next week.

Treatment complete.

On May 29th 2006 I had a 5cm lymph node removed from my neck for biopsy. This was my first taste of treatment for cancer.
Today, October 11th 2007, has seen me take my last treatment on a journey that has lasted 17 long, hard months.

Thank-you to everyone who has helped myself, Veronica and the girls make it this far. You know who you are and we couldn't have done it without you. God Bless you all.

Day + 104

I promised myself I wasn't going to update the blog until I had something positive or happy to say. Unfortunately I still don't have anything really positive to write about but I've been nagged to do a quickie update so here goes.
I have three more radiotherapy treatments to go and frankly they can't finish soon enough. The daily grind of a 4 hour round trip into Glasgow everyday has taken its toll and I am 100% puddle-ducked. I'm still not eating and the throat is worse than ever so I'm surviving on prescribed Calshakes. I take two a day and they give me nutrients and 1200 calories.... I've been told I need circa 3000 calories right now. The fact that I am managing to drink these shakes has meant that I don't need a feeding tube inserted in my nose and I have been managing a meal (usually something spicy) every other day. I'll be glad when this is over.

Day + 100 came and went. I didn't think I would make it but I did and I'm very much still alive. I managed to go from leaving hospital to day +100 without getting ill and then on day +101 I caught the nasty lurgy and cough that my little girls have been fighting all week. Bloody typical!

Big congratulations to Skie who was released from SCT today. At only day +12 she has shown remarkable strength and put me to shame! As too has my man Brian in California! Brian has to undergo what they call a "tandem SCT". This basically means that he has to have 2 SCTs in quick succession. Instead of getting BEAM chemo in a one'er like I did he gets the M for the first transplant and then the BEA part for the second. He has just been released from his first one and at day +16 appears to be doing just great.
Also, Duane continues to make a remarkable recovery from his allo-SCT and is a constant source of inspiration to me.

Day + 93 Things not much better.

Not much has changed since my last post. I'm still not eating and this has now been exacerbated by the fact that the radiotherapy has made swallowing an "issue"... that is, I can't swallow without being in extreme pain. The doc has prescribed a white liquid to take before meals that totally numbs the throat but I'm still not that keen on the actual physical act of eating. I can't get past the smell of cooked food without wanting to throw up.
It has become such a concern to me that I went to see a dietician yesterday and have being prescribed high calorie milkshakes... the same ones I had on the SCT. These too are disgusting to drink but it is easier on the throat than food so I am going to persevere with them. She told me I would be in trouble if I lose more weight between now and next week so I have an incentive to drink them!

I think the throat problem is due to having the radiotherapy so soon after SCT. Because I had grade IV mucositis my throat lining was wrecked. It probably hasn't recovered fully and now the radio is destroying the new cell lines faster than my body can replace and repair them.
Anyways, I'm off now. Number 10 of 20 treatments today so half way there.

Day + 82. Things getting a little weird.

It's been a tough few days all round. I started radiotherapy on Thursday but unfortunately decided the night before that I should develop diarrhoea. It has not been pretty. Travelling an hour on the train into Glasgow for treatment whilst trying not to soil yourself is not a pleasant experience. I lost one pair of undies due to the fact that ScotRail decided the particular on-train toilet I had to use shouldn't have any toilet paper stocked.
Arseholes.
Thankfully this little stomach upset has now just about passed but I have one more slightly worrying problem.

I don't want to eat.
Nothing appeals to me. Everything tastes like utter crap and the smell of food cooking makes me want to vomit... it is that bad. At the moment I am surviving on fruit and Weetabix. I went for a curry with work on Thursday night and hardly ate a thing and this is not like me to turn away mountains of free Indian food.
I feel terrible and will have to give my Oncologist a call on Monday. The radiotherapy will be burning calories like nobodies business and I'm not replacing them. No wonder I'm knackered and the weight is dropping off again.

I guess I'd better buy in some calorie shakes until I get over this.

Now the dog has it...

Just returned from the vets with a poorly Kelly in tow. She has been diagnosed with spleen and liver cancer and has between 1 week and 2 months to go. The vet said that he had never seen a spleen so large in a dog and some of her blood readings were off the scale! She is still bright in herself and very playful so there was no way I was putting her to sleep today but the first sign of any distress or discomfort then I'll be taking her back to "get the deed done", as it were. I'm gutted, to say the least. She's coming up to 12 years old so she's done not bad... she was only supposed to live till 7 or 8 as she gets so many steroids to keep her skin condition under control.

On my cancer front I've had good days and I've had bad days. My hair is coming back fast and I'm not losing any more weight, although I still don't have a good appetite as my taste buds are still narfed. I go in for tattooing tomorrow and radio begins on Thursday.

Day +76 today. In 24 days time I'm an official auto SCT statistical survivor.

Day + 70

Just a quick "few line" update.
Things are moving slooooooooowly and I think this is why I am dipping in and out of minor depressions. Nothing serious or worrying... just some black days when I want the treatment to start so that it can finish.

I was in Glasgow today on the CT simulator so that measurements could be taken for my radiotherapy. I now have three large crosses on my body... one under each armpit and one in the middle of my chest. I had to promise under pain of death that they would still be there next week. They are my alignment crosses and will make sure that I am in the exact same position for every radio therapy treatment... they get permanently tattooed next week and my treatment begins on the 13th. My last treatment is on the 11th October and I get the double joy of radio and a bone marrow aspiration that day.
I can hardly wait but at least I now have a definitive final treatment date.

The end is in sight.

Then we need a holiday... even if it is just to Ireland.

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