Stem Cell Therapy Medical Overview

Prompted by a number of requests, most recently from my sister, here is an overview of what the doctors are trying to do with stem cell therapy.

Stem cell therapy is used on refractory (keeps growing through chemo) or relapsed Hodgkin's disease. These can happen because a part of the cancer is resistant to the original chemo, survives and then grows back as a more difficult to remove chemo resistant Hodgkin's cancer. What the doctors are trying to do is to really kill this cancer with a very strong chemo treatment, the problem is that the very strong chemo will kill not just the cancer, but also kill all my bone marrow. Killing the bone marrow is a problem because it is bone marrow that produces all your blood cells like a little factory.

So the idea is that they take a sample of my bone marrow stem cells, which are the "factory cells" before the big chemo, and then put them back in after the big chemo to grow back the blood factory in the bone marrow.

The way this is done is to get the little stem cells out into the blood "perheriphal stem cell collection" because this is easier than cracking open the bones to get at the marrow. To get the stem cells into the blood a combination of chemo and growth factor injections is used, the chemo creates low blood counts, stem cells ramp up to make more blood, growth factor causes them to ramp up even more and they spill out into the main blood stream - just in time to get removed.

At the same time the doctors want to make sure they get all the cancer, so they are giving me IVE chemo to try to kill the bulk of the cancer so that the strong BEAM chemo (which can only be given once in a lifetime) is used to "mop up" the few residual cancer cells rather than being expended on the bulk tumours. It is critical to get this right as this cannot be done twice in a lifetime, basically your body cannot take it.

So the schedule goes like this:

Chemo 1 IVE, starts to attack the tumours and starts stem cells producing

Chemo 2 IVE, should have reduced cancer by 50% at least, increases stem cells

Growth factor injections get stem cells to spill into the blood

Stem cells collected and frozen for later use (successfully done)

PET and CAT scans check if cancer is reducing enough (it was 70% volume reduction, clean PET scan)

Chemo 3 IVE finishes off the reduction in the bulk cancer leaving just a few cells to mop up

We are here !

March 28th Chemo 4 BEAM chemo is the really toxic one which kills everything, cancer, bone marrow the lot leaving me reliant on transfusions and pretty sick in an isolation bubble.

April 4th Stem cells, collected earlier above and frozen, are defrosted and added back into my blood.

April 16th or so stem cells have migrated to the bone marrow implanted and start to grow new blood cells after about 14 days, still probably needing support with transfusions as well.

Gradually counts come up and dependence on blood transfusions, antibiotics etc is reduced day by day, when certain targets are met the patient allowed home.

Gradual recovery from the damage of the chemo to the other organs of the body and the slow establishment of fully functional marrow takes about 3 months, it takes about 6 months to feel "normal" again.

That's the plan

So in this process there are three critical milestones, first is getting the stem cells harvested, in many cases they do not come out (done), next is getting the bulk of the cancer killed so the BEAM concentrates on getting the few remaining cells (done), finally surviving the BEAM chemo and successful transplantation of the stem cells into the marrow (next big to do).

If I get through the BEAM treatment, and there is every indication I will as they do not usually lose patients of my age and fitness, then the big question is did any of the cancer cells survive the BEAM chemo tucked away in some corner of my body or did any of the cancer cells get harvested with the stem cells and reintroduced to my body via the transplant. The latter is not so likely in Hodgkin's which in the early stages confines itself to the lymph nodes. The only way to answer this question is to wait and see if it grows back, if it does not grow back in 5 years I am probably clear of Hodgkin's.

After 5 years then the next-on worry is leukemia, cancer of the bone marrow, caused by the treatment which affects 5-10 percent of us, followed by all the usual issues of vital organ damage from the chemo. I will need to get fit and be pretty careful in the future and frankly probably not plan on being around as long as the average person given all the damage and consequences. Early retirement will be a topic of discussion should I get to year 5.

So that's a pretty boring post but I hope it clarifies the treatment regime for those of you who were asking how the overall plan looks. I am feeling better after my blood transfusion on Sunday and hope to start gentle walking exercise tomorrow to start to build up some strength for the BEAM chemo.

Back to cooking, cars and politics next time.

Gerry

Pink blooded man

Ongoing tests today at the hospital have revealed some of the reason for the depth of tiredness of this chemo for me, I am officially no longer a red blooded man, perhaps a light shade of pink in more appropiate, I may even develop a taste for VW beetle convertables if it goes unchecked as Kenny has been encouraging for weeks. Seems like they set a safe minimum red blood cell count of 100 for us chemo heads, already well below normal, and my counts hit 81 yesterday, and were down on the prior day, so that accounts for some of the sitting down half way up the stairs kind of stuff. As a result I have to go into hospital tomorrow for a blood transfusion to keep me wobbling along above the minimum until my own bone marrow takes over. This is pretty straightforward for me as I have my "plumbing", so I just get cliped up and pumped in, but they need to look out that I do not have any sort of a reaction.

So I shall get a few more chapters of Fisk in, now at the Iran/Iraqi war during which the Iraqis suffered 10 times the US casulties in Vietnam, yet it hardly hit my radar screen. Ironically the US and the UK were strongly supporting Saddam as a "loyal ally" at this stage despite him starting the war, exoceting a US frigate and wiping out Iranian troops and villages with chemical weapons, which you guessed it, we sold him the bits for. No wonder it was a surprise when he had none left. Key lesson is the Iranian regium are tyranical nutters who have killed vast numbers of their own people, just like Saddam, and you really do not want to go to war with them as they really go for this "you get to heaven on an express train if you die fighting for your religion", truly frightening accounts of that war and the zeal of the Iranian forces.

Deputy blogger is still on a high from her photo op with Jack McConnell the First Minister and is now planning follow up correspondance inviting him to the Science Festival etc. We had a nice evening last night as Jim and Sarah plus kids came round and we relaxed with some wine (not much for me juicy water being my thing these days) and a great chat as the kids played hide and seek and murder round the house. It was good to break out of the social isolation imposed by the combination of not feeling so well and trying to aviod infections.

So today is "super saturday" in our Rugby series with three games in a row starting at 3pm, two of which are pretty interesting top of the pile being England/Ireland. That shall be the main part of my plan for the day and good relaxation ahead of my first ever transfusion.

Go Ireland !

Cheers

Gerry

Deputy Bloggers Special Day

Today is Lee's birthday, I shall enjoy teasing her that she hit a certian age before me, even though its only by a month or so, I still qualify as a "toy boy"! I called her at the Scottish Parliament and she had to jump off the phone as the First Minister was walking towards her exhibition and she wanted to show him around (check her out with the grand fromage of Scotland on her birthday!). Her exhibition is just outside the main debating chamber and they have a very lively questions session on Thursday, so this is proving to be a lot of fun for her, and may even be the beginnings of a longer term interest in politics and how things get decided here in Scotland. That should set her up well for her birthday tea which Holly and I will be working on in the meantime, while Poppy rehearses for Aladdin - normally we would go out for dinner and some good wines but just at the moment I am a damper on that sort of plans unfortunately. Instead the girls and I have set out to organise a birthday tea for Lee at home, current plans are:

Mood : Candlelit table, Birthday Flowers (from dad) Mozart background play list, chilled glass of champagne in hand when returning from hard day at Scottish Parliament. Hot bath to soak away stresses of political life (Poppy) while Holly (aka "the cooker") and Dad work on the menu.
Starter : Fresh dressed Nova Scotia Lobster (thanks to Waitrose a local shop)
Main Course : Lemon sole au Gratin (retest requested sober by lee), Butter and herb layer bake Potatoes, sweet peas in butter (lee likes peas !), Served with a Reserve Sancerre white wine (sadly not for me)
Dessert : Duchy Original Lemon Tart with birthday candles and happy birthday chorus.
Finish with : Birthday Chocolates (H&P), Espresso coffee and/or liqueur

Having written that all down there is of course the chance that she will come home to find the ingredients defrosting on the kitchen table, and me sound asleep on the couch instead, given the performance of the last few days. However it seems like my fever broke about 2am this morning and with a good sleep through to 10am I am feeling much stronger than I was yesterday or the day before. Yesterday was one of my reasonably rare "low" days so today being Lees birthday has helped me mentally buck up my act and get back on track.

I guess the problem was that I had been pretty sick solidly for about a week, the chemo was making me feel naseaous and very metallic, my fatigue was extreme as I discribed yesterday, and at the same time all these bugs were fighting an insurrection/civil war over my throat and nasal passages which meant I could not breath well enough to sleep. So after two nights of not sleeping and a day back in the hospital I was just mentally shattered, phisically tired like a rung out dog, and needed hugs and reassurance from Lee to keep going. Thankfully the big pills which I started taking at lunchtime started to kick in, nasal passages cleared enough for breathing, tempreature and fever dropped off, and round about 2am my dreams slipped over from scary fitfil green monster things, to normal gentle odd life stuff - and I slept pretty solidly for 8 hrs. That was a major relief. This morning I feel like a big damp blanket has been lifted off my mind and although phiscially things have a long way to go, (industrial scale fungicides and antiboitics at the same time have an alarming effect on body function) I feel we are on the way out of the trough of chemo 3 and the nose is pointing towards the sky from a pretty deep dive.

I hear Holly at the door, so we shall start the routine of homework and snacks before heading into our "birthday dinner" project.

I'll let you know how it goes, in any case its nice to feel like I am back in the world after the last few days.

Cheers

Gerry

Parisites on the home front as well....

The recovery from IVE Chemo 3 is proving to be, as expected, a deeper dive than before. I have managed to eat reasonably well, our stalwart lamb stew thrown in with a mix of smoothies, fruit, youghrt have kept me going however I probably needed more of the latter, at least according to lees magazines, as I have managed to grow both a bacterial infection of my nose/throat and thrush in my throat. Not a specially pleasant situation as the combination of the infections kept me awake all night, despite me being really tired, so this morning I am back in ward 5 getting treated for the infections while blood and swab checks are done to ensure no nasty parasites or bugs are lurking behind the known ones. I am finding that climbing up the stairs to the study leaves me out of breath and needing to sit down as my blood counts drop, when I lie down I feel like I could just jump up and run around like I would have done in the past, its only when I try to actually do anything like that for more than a minute or two that I realise how far from fit I am and begin to understand why the doctors are giving me four weeks to get my strength back before BEAM chemo.

During this whole process I experience the opening and closing of the circle of things I can focus on. Before the treatment I would think about plans for the future, how different colleagues could be coached or developed, how we could reorganise to release more of our potential while thinking about weekends away, holidays or plans for the house - while driving to work or jogging around the park. Now I can only focus on one thing at a time and even then often its things that did not require focus, like eating dinner, walking to the shop to get a paper etc. It must be odd for Lee, or perhaps a relief, for me to be this closed in. I can assure the readers that earlier claims of planning or global domination Gerry returning in the near future are much exaggarated. In fact Lee who is hob-nobbing with the great and the good at the scottish parliment is much more on that course than me, and has been heard to say - Member of the Scottish Parliment seems like a pretty cool life, over the last few days (now that they have let her in!).

So medicine in hand I am heading back to home, just been given the all clear by the very capable Dr Brenda who looks after the walking wounded here with great incisivness and warmth.

Cheers

Gerry

Return of humble yeti

Sightings of the fabled humble yeti have been seen back at mulligan home, he sleeps in a darkened cave for 20 hours of each day, emerging only to sup at a bowl of lamb stew before groaning and heading back to bed clutching anti nausea pills to ward off illness and the parasites transmitted from the Scottish Parliament. There is still some hope to catch a glimpse of this rare beast along with the even rarer "home farm companion" vision of Lee sitting at the kitchen table sewing on decorative bits to Poppy's "Aladdin" costume while listening to the radio, takes one back to the 50's, well only if Lee swapped track suit bottoms for an A line skirt..

So home again, doing well but very sleepy and a bit sick, nothing that good food, plenty of rest and time wont solve.

Cheers

Gerry

Parasites in Holyrood

Good evening bloggers!

It is Sunday night and at last all is quiet at No 1B. I have a small Highland Park at hand, I can hear a tape of "Horrid Henry" playing in Holly's room and the cats are curled up together on the sofa. Poppy is in her room trying on her outfit for the 10th time....for the production of Aladdin in the school drama club. We went to a great fabric shop today and bought lots of wonderful spangly things to accessorise her outfit and then I had to spend most of this evening sewing it together...still good practise for the fashion show we are planning for the Monster fundraising.

Went to the hospital on Saturday hoping to make the aquaintance of humble G (think I was too late for that) he had morphed into planning and plotting G by the time I got there. So when I got back to Sarah's to pick up the kids I was delighted when she brought out a chilled bottle of pink fizz and ordered a chinese takeway...a true friend! We did a little planning for our fashion show, Sarah will try and book the church halls for the 21st April and we will approach some of the local businesses for support/sponsorship etc and most importantly have a power lunch with the local knitting group!

Spent this morning sending E.mails to the MSP's at Holyrood to warn them of our exhibition that we are taking to the Scottish Parliament this week. It concerns "The Beasts within us" and looks at the fascinating (yes honestly) relationships between people and their parasites with a bit of Scottish History thrown in to please the Scottish Nationalists..all about how the Scottish doctors were sent to the colonies as the best jobs went to the English and then the Scots discovered all these rather nasty diseases such as Malaria and Elephantiasis....

Did you know that Malaria kills 2000 children each day in Africa? Bill and Melinda Gates are pouring squillions into this area where the major issues are drug resistance and lack of effective vaccines. They are also doing the sensible thing and providing bednets to prevent the disease in the first place.

Did you know that 1 in every 3 people worldwide are infected with a parasite called Toxoplasma? Once you are infected it stays with you for life persisting in your brain. This was the parasite that killed Tommy in the Irving Welsh novel "Trainspotting". New research has shown that this parasite can alter your behaviour (so I expect Tommy Sheridan might be interested in that one!).

Did you know that parasitic worms may provide the answer to the many millions of people suffering from allergic disease? Disease such as asthma have risen to epidemic proportions in many countries in the developed world, whereas these allergic disorders are still comparatively rare in people living in the developing world. The reasons for this are unclear, but some new research has shown that children living in Africa and infected with intestinal worms had no signs of asthma. Following drug treatment to remove the worms, the children became twice as likely to develop allergic diseases leading scientists to propose that it may be the worms themselves that were somehow protecting people against the development of allergies. The dramatic rise in inflammatory bowel disease in many countries worldwide has also been linked to the absence of intestinal worms. The immune response we make to get rid of worm infestations is the same as an allergic response and the worms have learned to counter this response by inducing more regulatory immune responses that will dampen down the inflammatory responses. Therefore scientists are trying to understand how the worms can counter the allergic responses as this may lead to new therapies. Clinical trials using worm larvae or worm eggs are currently underway in the UK and the USA to treat people with asthma or inflammatory bowel disease.

We are hosting a discussion on using worms to treat allergic disease at the Edinburgh International Science Festival at the Reid Concert Hall on 3rd April at 6pm if anyone is interested in hearing more about this.

The irony of all this is that I may not actually be allowed into the Scottish parliament building tommorrow, despite having been invited by them and despite handing in all the paper work many weeks ago I still have not got security clearance. I have obviously had too many parking tickets! So I may have to set up the exhibit outside the building with all the other protestors trying to get in.

Have a good week.

Deputy Blogger

New Life Celebration on Day -47

Everyone in the family is getting ready for the Christening of Brenda and Jonathon's daughter Grace in Ireland tomorrow just as we have heard the news that my brother Kevin and Nora are expecting. So this weekend is a great celebration of new life in the Mulligan family. Unfortunately because of chemo 3 the Edinburgh branch of the family will not be present in person but perhaps we can have some fun with our video conference technology and join in a bit from here. Anyway congratulations to all concerned for tomorrow new life and new hope all in one week is a real blessing.

I have dropped into the calender speak of the transplant patient, from here on in all the treatments and recovery is described in days before, or days after, the actual injection of the stem cells back into my body. This is planned for April the 4th so today is day -47, BEAM will start on day -8 and we will know if the stem cells have taken residence in my bone marrow and are producing the right cells by day +14. My concentration once chemo 3 is over is to do nothing to "stop the clock", this can include a major infection, specially of my Hickman line, or too slow a recovery of my blood counts after chemo 3. Lee is already warning me she is going to up the discipline on the sterilisation and avoidance of infection.

As to chemo 3 this is a bit deeper than the last time as expected, not in any major bad way, just big waves of fatigue and a lot of sleeping, loss of concentration, hard to stay sitting up for too long that kind of thing. However all of this is no big deal to cope with I just go with the flow and sleep when I need to, some of my sleeping may be caused by trying to wade through Fisk as he moves from the soviet invasion of Afghanistan to the fall of the shah of Iran (yawn! ). Off to sleep now pretty happy and content.

Celebration of new life and celebration of a better chance for an old one, not a bad day.

Cheers

Gerry

PET Scan Clean

Significant events for today are firstly Dr Scott called in to say the PET scan, which can tell the difference between "live" cancer and residual scar tissue has come back completely clean, no hot spots or concentrations of cancer can now be detected in my body.

There may be a cell here or there which is why we still need to stay the course and finish this chemo and suffer the beam chemo. This reduces my chance of relapse from 60 percent to 10-20 percent which seems worth the pain of the treatment. However the key thing is the "mini me" cancer, is well and truly taking a kicking and Dr Scott and the other poison wizards are winning the battle of chemistry in my body, leaving me just to manage the emotions and side effects which are the main content of this blog, but which are a sideshow to the real battle of chemo vs cancer vs body.

Our luck is running well this week, and more and more I realise that it is luck as I see other folks I am being treated with fall at different hurdles, one could not get stems cells this week and two others cannot get their blood counts up after chemo 1 to get chemo 2, another they have just told they cannot do anything more for, other than make him comfortable. They eat well, have good attitudes and supportive families, but their chemistry did not work out - there is no other good reason why I am charging on and they are still in the limbo.

So my reflection is that the work I have done to have a positive attitude is important to help myself, family and friends deal with this situation - as people take their cue from my attitude. And it has really helped me mentally to be going through my diet, eating and blogging routines - keeping things as normal as possible at home for the kids, and allowing ourselves the odd glass of wine or treat in a spa hotel. All these things help us get through the days of treatment and recovery with some good measure of happiness and warmth in the stress and emotion. None of these things however are really part of the core battle for the chemistry of my blood and lymph nodes, in this battle the skill of the dark arts wizards, the legacy of the massive amount of Cancer Research, and the pure blind luck of life, are the key things dictating the actual future of my cancer. Which dictates the future of my life.

I mention this now as sometimes I think cancer patients are told that they will be all right because they have a good attitude, then if they are not all right they can question did they themselves try hard enough, eat enough veg, take enough supplements, do enough yoga - essentially feeling that the failure of their treatment is a failure of theirs. I feel this can put a lot of pressure on those who do fall by the wayside. Its better just to be supportive good friends and "wish the best" just in case your friend is one of the ones who falls at a hurdle, relapses (as I did), or has to face the news as millions do that "there is nothing more to be done", Then they can face that situation without feeling they are letting folks down, but just that their luck went that way.

There is something very humbling about being in the ward here and seeing so many folk in such tough spots, still dealing with it with humour and compassion. It makes me realise we will all die and that it is a natural part of life, eventually the luck runs out, and we can only hope it is after a life we can smile back at and the end itself is not too difficult.

I guess it must be funny for me to be blogging in such dark territory on what is a happy day for us and a great result, in my head I was prepared for good results and bad results and so in letting go my mental preparation for bad results I wanted to share where my thoughts had got to in case it was of any use to you in the future. I also wanted to get some of these thoughts, which we had discussed but not typed, on the blog record to remind me of them later and to make the most of sunny days and warm friendships in the future.

So enjoy your happy times, have a glass with good friends or pursue a dream, the clock of luck is ticking for all of us and looks to be heading to giving me another chance, with a tough time in between, keeping fingers crossed as always.

Heres to second (or third) chances


Cheers

Gerry

Big Fork in the road

Hi Folks,

Well I am all set up in the hospital now connected to my chemotherapy pump and starting to receive chemo 3 of the IVE chemo. I also have managed to download SKYPE (mulliganhomehospital) onto Poppy's laptop and web cam so I can web broadcast to home etc, which the kids are already enjoying pushing each other out of the way for a turn with the trendy headset. I hope this will really help with keeping in touch with their daily stories specially when I am in isolation. The priest that does the rounds and two of the nurses were fascinated with the technology, but unfortunately at that time Poppy and Holly were out bowling. When Lee came to visit she was surprised to be able to talk to the girls at home although still a bit shy of the technology, I think it will really help me stay connected. In fact its worth considering for when I travel on work basis along with MSN for emails (but perhaps both of those will not get past the IT security team at Gore and I don't want to carry two laptops).

Well the big news of the day was the consultation with Dr Scott, she was in very good form as my cancer has shrunk by more than 70 percent, with another dose of this IVE chemo still to go, this is a very good result and she was very pleased with my progress (scar tissue means that it never gets back to zero). Lee and I were very, very relieved. Had the tumours not shrunk, and this clone had grown through the previous chemo so that was a real chance, then we would have been in a real tight spot. With the stem cells in the freezer and the cancer (or mini G as Lee calls it) getting hammered by the chemo, the chances of getting out the other end of this have shot up dramatically two important milestones have been passed.

There is still some nasty treatment to come the BEAM chemo "will make you feel worse than you thought possible on some days" according to the doctor today, this is followed by the stem cell replacement and living in a bubble for four to six weeks but the light at the end of the tunnel just got a lot brighter. Basically if I keep my head down and battle through it there is every chance (80-90 percent) that I will get out of this at the end of the summer and be back into "normal life" with just annual scans to check for relapse or leukemia.

Another odd sign that the doctors are positive is that they are actually beginning to worry about the total Xray, radiotherapy and PET radioactivity load on my body, so will now try to keep scans to the necessary minimum, one about three months after the stem cell treatment and then the annual basis thereafter. Up to this point they had to delve in and find out what was going on "all guns blazing" but their minds are also turning to the future.

From a motivational point of view I feel fantastic, and Lee seems to be the same, with a lot of emotions we have both been keeping in check coming out along with the relief, so a lot of tears and some long way to go but today feels like a turning point. I feel that I can handle the rough days better if I have a really good chance that it is curing me, and not just using up time I have left being sick because of the treatment. So I just have to battle through it, lets see if I feel as tough on the day...I will probably just wimp around and ask for more drugs if previous experience is anything to go by - but in my own head, and perhaps only for today I am feeling like Rambo in training to beat the big Russian guy, bring it on ! (only thing is I feel loud rock music should play automatically in the background but nothing happens)

So, more soberly, new timetable is chemo 3 now, which will have me in hospital until Monday or Tuesday, recovery at home for four weeks to get fitness levels up to be able to sustain the BEAM chemo which should start on 28th of March. That will have me in hospital in isolation until early May so during the monster challenge I may still be in isolation or just having got out of hospital and very wobbly, so I think I will miss out on the party - 2008 instead I suppose. Doctors are saying minimum 3 months to go from the pretty wasted state I will be in to any sort of stamina, more like 6 months before I feel normal again.

So today was a good day, a real high in the emotional roller coaster so we allowed ourselves a bit of a yipee, fighting head back on tomorrow for the day by day dig in.

Oh and the bluesmobile is getting fixed finally by Aston Martin, and I did not have to pay !

Cheers

Gerry

mini g in retreat!!!!!!!

Dear Bloggers,

Quick up date with the best news. Dr Scott and the dark arts poisoning team at the Western General have got G's cancer in retreat enough for them to go ahead with the stem cell transplant...yipee. He still has to go through a few tests but it looks like he has been given the green light for the next treatment stage.

So round 2 to Big Gerry and mini-g is on the run.

off to celebrate

Deputy Blogger

Roses are Red, Violets are blue.....

Happy Valentines Day to all bloggers!

We celebrated in style last night with a rather competitive darts game in a gorgeous Highland retreat at the Spittal of Glenshee where Holly triumphed over Poppy and parents and we all enjoyed a magnificent dinner and sampled a few malt whiskys beside a roaring log fire. For an indulgent escape we can highly recommend Dalmunzie Hotel (www.dalmunzie.com) suggested to us by Ian. The chefs there are going to send us a recipe for Hollys comfort food recipe book to raise funds for The Monster. We had to travel to Aberdeen this week for G to get his Pet scan so we stayed overnight with my sister Dot and my mum and dad helped look after the girls when we went to the hospital. We also took the opportunity to deliver mum and dads belated christmas present which was a computer and internet access so they are busy making up impenetrable passwords and practising with the mouse. Mum has already got the hang of things as she has acquired a free mouse mat from a "charming young man" and John Lewis will shortly be delivering the computer desk...watch this space we predict day trading in stocks and shares starting shortly at No 71.

G is back into hospital tommorrow for Chemo 3 so he is busy packing his bag; computer and gadgets, DVDS: West Wing, Sopranos, Lost and Black Adder....some hefty intellectual books in case anyone with a digital camera is around, otherwise it is copies of Top Gear, Playboy and Viz and the obligatory photo of the bluesmobile, messages and pictures from Poppy and Holly and some Irn Bru and chocolate. He is looking really well at the moment and although he gets a bit tired he has generally been feeling OK so...fingers crossed for a good run with chemo 3.

Tim, Sean and Dave came round today to start the decking on the roof which we are all really excited about as this will be our outdoor roof garden from our lovely study upstairs. We are also getting into training for our Monster challenge and Lorna and I went for a lovely walk along part of the Southern Upland way last week from Longformacus to Abbey St Bathans with Lorna's friends Mike and Alison. Mike is a ranger on the Southern upland way so it was very interesting to hear more about the area. I was up the Pentlands on Sunday in the rain and met a man with an Eagle who was going hunting for rabbits.....Tim has started training in earnest but needs to get a suitable cushion for the bike, Duncan was also whinging along the same lines having gone for a 50 yard bike ride at Torridon this weekend. We have been trying to sort out accommodation for the event which has been quite a challenge in itself due to the size of our team, however we did manage to get places at Loch Lochy youth hostel for the night of the 4th May so we can have a team send off party then and a followup in Inverness sometime...on the 6th May. Duncan has taken on responsibility for the Inverness passing out party on the Sunday so we will keep you all posted. The Scots and the Irish teams will also have a couple of chalets in Drumnadrochit for the weekend for basecamp and for the support people. G and I tried to set up our fundraising webpage tonight see attached link: http://www.justgiving.com/gerrysblogteam

We intend to get a team photo to post on the site so will try and get everyone together for that.

So I shall sign off tonight and wish you all a very indulgent Valentines Day.

Deputy Blogger


Distances

Swifts turn in the heights of the air;
higher still turn the invisible stars.
When day withdraws to the ends of the earth
their fires shine on a dark expanse of sand.

We live in a world of motion and distance.
The heart flies from tree to bird,
from bird to distant star,
from star to love; and love grows
in the quiet house, turning and working,
servant of thought, a lamp held in one hand.

Philippe Jaccottet

Inspired Rugby passes the time

France have just scored a last minute try to take Ireland out of the running for the top spot in the six nations championship after Ireland seemed to have won, inspired Rugby after a close fought game, disappointing but brilliant Rugby.

The Rugby has been my way of passing some of the time this weekend as my body has recovered blood counts and stamina to allow the occasional beer and the games take my mind of the week of critical tests, consultations and the imminent start of chemo 3. Waiting for tests and results, while pottering around doing ordinary things, is strangely stressful and both of us have shown some cracks or stress relieving behaviour over the last few days.

Lee had a good night out after work on Friday and a few glasses of wine while my gastronomical distractions led me to create hand rolled roualdes of lemon sole au gratin from scratch. Getting Lee out of the pub to enjoy the delicate fish dish at its best was more of a challenge (complete role reversal there, I felt I should have an apron and a rolling pin to complement the threat that she would be wearing dinner if she did not get home!). In the end the fish was fantastic, she did come home, and I caught up with a very nice Chablis both ending up with sore heads the next morning as a result. Thankfully it was the start of half term so one of us did not have to get up at 7.30am to take Poppy to Hockey so we all had a great sleepy lie in.

After my wobble of Tuesday I have felt fine with just the odd bit of fatigue and I have crossed off a lot of the "honey do" jobs around the house during the lull in treatment to let my body (hopefully not my cancer) catch up and get ready for chemo 3. Sometimes I worry when I am doing well myself that my cancer might be as tough as me, the old Gerry vs Gerry worry that Lee spoke about in an earlier blog. Well this is the crunch week for working that out.

Unfortunately for the kids this all kind of messes up their mid term week, we would usually try to get away for a short holiday but that is out of the question just now, in fact we have struggled a bit with holidays for the last year but have managed a few memorable weeks in Loch Rannoch, Ireland and Orkney. I asked Poppy if she wanted to have a friend over to play and she said "no there all away, most of them are in France skiing" changed days since I was a child ( and an exaggeration as most of them are actually with grandparents or in cottages in Scotland but a few are in France)

So our "holiday" plan for the week is CAT scan Monday in Edinburgh, up to Aberdeen to stay with Lees sister this time for PET scan on Tuesday (also picking up bikes and getting Lees mum set up with a computer). Staying over at a nice country hotel Tue night with the kids tucked away in an adjoining turret room as our treat. Then returning to Edinburgh Wednesday night ready for the consultation with Dr Scott Thursday first thing and chemo 3 on the same day. Hopefully Dr Scott will have the results of the scans, at least preliminary, on Thur or Friday. If the cancer has been pushed back by the chemo then we are on for the stem cell procedure, it needs to show a minimum of 50% reduction for the prognosis to be good and the treatment to go ahead. Lets hope I continue to be the model patient and get the right answer. In between I will try not to think about it and not worry too much, but honestly that could be easier said than done.

So by the end of this week we will know much more about how the future looks, and be in the depths of chemo 3, these things are cumulative so expect me to be wiped out a bit heavier than the last two times, as long as I can avoid infection, then lots of sleeping and feeling sick should be all that needs to be endured - I will keep up the scrubbing!

I should also have a timetable for the return of my long lost Aston, but it is not getting too much mindspace inside the big polo mints, I must have had an incredible amount of xrays in the last year, even more than I used to pick up flying across the Atlantic every other week! Perhaps I will start to glow in the dark after this week.

Sunday night here in Scotand, some good movies on the TV, and some good food to enjoy so things are not too bad even if my head wants to fast forward to Thursday.

Cheers

Gerry

Wobbly me and wobbly bluesmobile

Sometimes you can speak to soon, although we were delighted at the stem cell result and genuinely intented to celebrate, you can forget that someone took all the blood out of your body and centrifuged it before putting it back that afternoon. Well about an hour after I wrote the last blog my body decided to show me, once again, who is boss. I started to feel wobbly and went to bed having only sipped at my first glass of (very nice) red wine, some hours of fitful sleep and I woke up with a temperature of 38c and a soaked pair of pyjamas, over the night the temperature stayed at this borderline for calling the hospital but by 8am it had crept up to 39 which is past the "go to hospital now" rule I have been given (not 99 as in earlier chemo head edition). I duly phoned in with the measurments and they told me to get in now and bring a bag to stay. Bummer!

Fortunatly I only stayed in till 4pm as my temp dropped of its own account and the blood tests for bugs proved to be negative so they let me go after I had watched the first four episodes of Lost on the DVD, and read some chapters of my "heavy" book just to keep my intellectual credibility up with Dave and Kenny. This time I was in an isolation ward on my own as they did not know if I had a bug, or what kind of a bug it was. Turns out the balance of opinion was that it was just a kind of kick back by my body at being roughly treated, pumped full of growth factor, centrifuged and then left, seems reasonable to me really.

So I got home late yesterday feeling a bit "out of sorts" just because my day had been displaced with hospital and yet I did not feel 100%. An odd day.

My mood was not improved by the discovery that the resolution of the cracked mounting round the jack point on the bluesmobile is not clear or easy. My dealer, and the dealer I bought the car from (who is still liable for this type of fault insided six months I have discovered, but he is cautious to admit) all agree that (a) they have never seen this fail before (b) its serious to fix and (c) Aston martin should really pay for it as its clearly a construction defect or weakness and they build reliable cars. All of which is great, except Aston disagree, they are after all for sale by Ford so I guess purse strings are tight.

So they are all in furious arguement about who should pay, but my car is stuck in the garage in limbo for the moment, which is irritating, and I am having to waste time writing formal letters to set out my legal options to return the car, and to get my money back if necessary. This is not an outcome I realish but a point I need to remind the dealer of, just to ensure the correct application to the resolution of the problem (and in case it becomes necessary). In short all a bit tedious and time consuming when I could have done without it.

On a happy note Johnathon and Sophie our good friends visited tonight and, after appropiate scrubbing down and hand washes, stayed for some of my famous Irish stew and a glass of red wine before heading down the road in the snow, yes our tiles have a light dusting of snow and it looks like we are due more in the next few days. So a happy eveing was had by all and everyone else has retired under duvets except me and the cats (one of which is very pleased to have caught a mouse today in the hall). I am off to the hospital again tomorrow for some regular check ups and line maintenance but have a relaxing weekend of Rugby watching planned ahead, and scans early next week in advance of chemo 3 and consultation on Thursday. All go in Hodgkins land.

Hope things are good with you, Brenda and deputy blogger contine to try to sort out accomidation for the monster challenge, I guess 600 others are trying to do the same thing. I think more hiking is planned this weekend and the recovery of our bikes from Aberdeen may happen when I am up for the scan, so lee can have the same fun Tim has found with sore arse syndrome!

Its a nice change that the sore bits are not mine !

Cheers

Gerry

Stem cells in the bag !!!

Just a quick blog to say that the stem cells are in the bag, the reddish one at the top of the machine, and that hurdle is cleared (and now lab confirmed) - go bone marrow !! The minimum count needed was 15 and I clocked in this morning at 83.

Totally delighted over here, and going to celebrate,- this was a critical one because, although the chance of it not working were low, the consequence was that would be pretty much the end of the line - so vast relief and generally jumping around like a puppy over here!

That is one of the three compound probabilities set back to 100 percent

Cheers

Gerry

Superbowling towards stems, go Ireland !

Evening bloggers, I have decided that a foray into political analysis at 3am after four days of chemo and two days of sleeping one hour a day due to injecting myself with growth hormone has probably not kicked that career off to a good start. So to the many emailers who pointed out the flaws in my analysis such as I did not account for religious wars, nutcase dictators, genocide, evil people and evil deeds done for the greater good (like atom bombs), OK I get it, there are times when talking is not going to solve the problem. Actually I enjoyed the email discussion a lot and the wide input from folks. To my brother, who lived through it all and laughed his way through the blog, and then phoned me to say he got it, but no one else would, thanks. And to Kenny the prize for the most concise analysis - "mullah what were you wittering on about, focus on getting well".

So things are going well here, mostly, Ireland won the opening rugby game well against Wales in a really good game. Scotland got stuffed by England yesterday, which is usual, but left the boys crying in their beer as you would expect. The program was broadcast in the new high definition standard so we were able to benefit from the various bits of kit I have installed over the last weeks to get great sound and a really good picture.

Other than causing me to stay up all night the growth hormone did nothing for the first two days, this caused me to worry that my bone marrow was shot, however finally today the pressure built up and the pain started in the big bones of my body. Which is a good sign that the injections are working, getting the bone marrow into overdrive ready for the stem cells to be harvested tomorrow. I am watching the clock to see when I can take the next painkillers so I doubt I will get much sleep tonight - which is not too bad as I have discovered that this is Superbowl Sunday, and they show the match here in the UK. So that's my plan, orange juice/snacks, movie and Superbowl to get me through to the stem cell procedure tomorrow.

I am feeling confident that will go well, it needs to, no messing, as if we do not get stem cells tomorrow or Tuesday then things are not good. What is odd is that everything else is going along as normal, the kids have school, drums and drama followed by Jazz and Tap, Lee is going to come in to see me during the procedure, but mostly life is going to continue while a machine tries to extract the cells that will, literally, save my life, its an odd feeling to be sure. As I said confidence is high and the last 14 people they did with Hodgkin's all managed to get stem cells out successfully, so lets tick the box tomorrow and move on.

The team which is doing the monster challenge is now up towards 15 folks so we are trying to set up accommodation for about 25 for that weekend 5th May. Lee has been out power walking most nights and today went with Lorna for a nine mile hike as part of her training plan. I think this is a lot of fun for her and a great focus for her and the others. Hopefully I will be out of hospital but there is a good chance that I will be either still in or too sick to travel up to be a supporter, so I am a bit jealous. Lets hope in a years time I will be fit enough to be a participant.

So I have bone pain and touchdowns and a long night ahead, but I am confident about tomorrows procedure and looking forward to getting it "in the bank", the stem cell bank!

Cheers

Gerry

Inflammable Material planted in my head

I always intended as a young man to impress the girls with my cars, later years has taught me this is a poor tactic, and fatherhood has changed the girls I have the most fun impressing. This is me taking Poppy (front), Holly ( rL) and Anna Holly's chum (rR) for a spin in my Aston with the roof down, prior to baldy day a few weeks ago. Little wheel spins on a wide clear street near us brought squeals of "do it again dad" and disapproving looks from the one pedestrian walking his dog. The Aston has a problem with its jacking point cracking which was picked up during an inspection today so is back to the garage to sort out under warranty (two days left on the warranty thankfully). When I was at the garage I saw two same year models with similar mileage for 10k more than I paid so it seems to be holding its value, which is what I hoped for, so I get some service hassle but its a lot cheaper than the depreciation on a new car (so far deputy blogger is buying that line).

Back to the title of this blog (which is a lyric about bigotry from stiff little fingers), a funny side of my extreme fatigue of the last few days is that when I start to recover I get bursts of energy which normally last for 2-3 hours, these can happen at any time of the day or night as I have been sleeping around the clock, just at the moment I am in one of these bursts at 2.35am. Before I decided to get up and sort out the family photos on the computer I was reflecting, in half sleep, on my teenage years as my brother Philip had taken my nephew Matthew to our old school and sent me a booklet on the history of the school including the stories of us running when we were shot at (only an air rifle, so did not really count in Belfast) in the playing fields, our buses being stoned on the way to school (and then the RUC escort patrol stating to the media that we broke the windows from the inside - a blatant lie). Finally the tragedy when a worker on the construction team was killed when a hand grenade was thrown into their minibus.

As I was working away on the photos I was listening to Sting on itunes which ran on naturally to Stiff Little Fingers, as I labelled files and moved things into order the music seeped into my mood reminding me of the anger I felt at the waste of life and the petty bigotry which is necessary to harbour and nuture the seeds and roots of resentment and injustice which is the core of terrorism in all conflicts. My learning's and lessons from this background are very amature, and probably a bit obvious, but never the less easily summarised:

1 To deal with a problem of so called terrorism (usually freedom fighters you do not agree with is a better definition) you have to deal with the reasons or the grievances in the main community.

2 More bigger better guns will not work, its easy to shoot and scoot, only a community (all factions) that wants to support and has a buy in and an interest in the solution, will stop the violence.

3 Talk to anyone who can make it happen, specially the leaders of the insurrection and influencing states, John Hume a remarkable and brave man started the dialogue that opened up the peace process by talking to the IRA and developing the concept that the violence would not work. Maggie Thatcher bravely talked to the Irish Government about the "joint problem" of N.Ireland both governments agreed to let it go if that would fix the problem. But in the end the leaders of the strong factions, not the middle men, have to be statesmen to carry it.

Anyway Stiff Little Fingers were a favourite group as we had friends from all sides, and Philip knew some of them. They were ahead of their time with a song called Alternative Ulster, some of the lines talk about the grip of the bigots and the paramilitary groups on our communities in the 70's and 80's, apologies to the writers for copyright and transcription mistakes I think they are worth a reflection here.

Take a look at were your living.
You've got the army on your street
And the RUC dog of repression is barking at your feet
Is this the kind of place you want to live
Is the the place you want to be
Is this the only life we're going to have

And they say their a part of you.. and that's not true you know
They say they've got control of you.. and that's a lie you know
They say you will never be... free, free

What we need is an Alternative Ulster
Grab it and change it its yours
Alternative Ulster be an anti security force
Alternative Ulster ignore the bores and their laws
Alternative Ulster alter your native land

Twenty five years later, this weekend, the IRA in the shape of the political party Sinn fein made the latest of a number of courageous steps by recognising and supporting the renamed RUC as the only correct and legitimate force for the upholding of law and order in Ulster, as part of a deal which will see them join government with old enemies. Now they and the others have to be accountable to the people and worry about jobs, health and the economy of my native land. Respect to people of true courage and conviction who are prepared to work with the real situation to make the life of the people better, true statesmen finally are creating the Alternative Ulster and the freedom we dreamed of. As someone who had one distant uncle an RUC man, another assassinated for being a catholic, who's dad worked for the British forces (fleet air arm), peace is a wonderful thing.

So a little bit of history tonight, but history, specially personal history, shapes us. Sometimes the most interesting conversations are about why we think differently and history is often the reason. I remember at the last Walleye camp finding myself at loggerheads with my friend Bill over Iraq, prior to it happening, only later did I reflect properly that our youth experiences and frames of reference were probably the cause, so I would have better spend my time exploring these than simply arguing about the resultant different conclusion.

Cheers for tonight, my other favourite band is the undertones who we would see live regulary they had cheerful songs including if I remember rightly an album "more songs about choclate and girls" to be honest they were my favourite, you can only be 17 once.....

Cheers

Gerry