But wait, there’s more…. …. IT’S A NEW PLAN

We met with the surgeon and, unexpectedly, the oncologist today. At the oncologist’s behest the surgery is back on again, as we thought would be the case. So in actual fact we do not have a new plan, just the old one reinstated, but if I wrote that it would make for a lesser headline (and it would remind me of the current state of politics in this country. Face it people, tony rabbit does not have a plan, at least not one that he is being honest about. As for k rudd, if I wanted a nut reinstated then he is not the one I personally would choose… Oh, and the lack of capitalization of the names of the people who inhabit the house on the hill in our capital was not an oversight on my part. I can’t believe people voted for any of these clowns- on either side, but don’t get me started).
I am glad that surgery is going ahead as it will give me a degree of peace of mind for the future. The surgery will not happen until mid-August, partially for scheduling reasons and partially to give me the time to get into the best shape that I can. That means that we have about four weeks free between now and the pre-operative scan/appointments that will start on the 30th of July, so we are going to take the opportunity to go home to Tasmania for a while. It will be a wonderful thing to be home, albeit briefly, after 139 days away (but who’s counting).

We also saw the dietician, who was very happy with my progress, especially when I told her what I had been eating over the last couple of weeks whilst we have been staying at Robyn’s Mum’s place then at My Mum’s place. If a mother can’t fatten someone up who can? I put the last couple of kilos I have put on down to recent helpings of bread and butter pudding with double cream, oh, and I think the custard may have helped too, not to mention Maggie Beer’s icecream. In fact I think it was the custard that finally got me back to the 74kg I was at before treatment, which is great because my clothes fit me again, but If I hang around here much longer I am going to have to give Jenny Craig a call (aka Custard Guts R Us), looks like there will be no more prescription pizza for me. On the other hand, the dietician did say that it is not a bad idea to be carrying an extra couple of kilo’s going into the surgery, mmm more custard then… The dietician thinks that I am going so well that they do not want to see me again unless I start losing weight… I can’t see that there is any great risk of that happening. Mmmm, food.

THE FUZZ IS IN TOWN!

Sorry, no, not these guys (they obviously have thier hands full already):

And I'm not talking about this type of fuzz either, but check your fridge, I'm sure you have some lurking in there somewhere:

 The fuzz I am referring to is this:

 Yep that’s right, we have hair growth again, more specifically, I have whiskers on my chinny chin chin and also some sparse growth on my heady head head. Actually, if I am completely honest, the stuff on my chin is more like bum fluff, and my top lip looks more like it needs a good wash rather than a shave. .. Maybe I am going through puberty again, Robyn will be ecstatic… Ha!

Cheers, Pete.

Best Laid Plans

We returned to Melbourne on Thursday so that I could have my pre-operation Ct scan on Friday morning, and also to prepare for Mondays surgery. Late on Friday afternoon a member of the surgical team called to tell me that the surgery had been cancelled as the latest scan had revealed that the enlarged lymph node that was to be removed had shrunk in size from 17mm in diameter to 11mm. This is shrinkage unexpected and good news, however it also raises a number of tricky questions.
At 11mm the lymph node is now classified as 'non specific' i.e. it does not fall into the category of being definitely problematic or definitely benign, and as medicine is a conservative profession by nature the surgical team does not want to undertake a major operation without  there being a definite and specific need to do so, hence the cancellation (it seems that the surgical team made the cancellation without consultation with the oncologist who ordered the surgery, which is inopportune as I think oncologist would have requested that the surgery go ahead due to some complicating factors).
The complicating factor, and the reason the surgical team should have consulted my oncologist prior to cancelling, is the history of my disease over the past few years. This lymph node was first identified as being a potential problem back in 2011 and surgery was raised as a possibility at that time, however the lymph node fell into the 'non specific' category then too. That fact, in combination with the fact that the chemo I had at that time had appeared to be successful, meant that the surgery was deemed unnecessary and I was placed on a monitoring regime instead.
Fast forward 18 months to my latest relapse and it all feels a bit like deja vu, except that I have been through another mountain of crap to get here and I don't want to be sitting here in another couple of years facing the same problem, or worse, I'd rather have the hopefully temporary hassle of major surgery and gain some long term of peace of mind. That may seem weird to some, but I have to bear in mind that treatment options get more limited and more brutal with every relapse, so I want to do everything I possibly can now rather than risk another relapse.
Offset against all this is the possibility that the enlarged lymph node has not actually been the source of my problems over the last few years; that is just one of many question regarding this matter that I will pose to my oncologist when he returns from leave on Monday week. I have a feeling that my oncologist will share my opinion that the surgery is necessary and he will request the surgeons to go ahead irrespective of what the lymph node is doing, on the other hand he may want to wait and do another scan in month or so to see what the lymph node is up to.
All the above adds up to a sense of confusion at the moment.
Cheers, Pete

Recovery and operation update

Hi everyone,

Things continue to go well with my recovery, we have now been up at Robyn’s Mum’s place for just on a week now, and if I compare how I was a week ago with how I am now I can easily say that I feel much more ‘normal’. My head is clearer, I am less tired and I no longer need to hand the jam jar to Robyn to open! Superman, eat your heart out. It is nice and quiet here, so I am getting plenty of good rest. There are also more opportunities for light exercise here than what there was back at the apartment, add in good food, good books, good films and good company and it has turned out to be exactly what I need right now. Many thanks to Robyn’s Mum for having us (Robyn and her Mum are busy preparing what promises to be another delicious dinner as I write… it’s a hard life).

 It is bloody cold here in the mornings though! It was -2 on Wednesday morning, we woke up to -4 yesterday and today greeted us with a very crisp -5, it was so crisp you could almost bite off a piece of the morning air and chew it. I know some of those hardy souls reading this from colder climes will be laughing into their cornflakes at my suggestion that -5 is cold, so I probably need to  harden the $%^^ up, but that can generally be said for the entire human race. I was lying in bed this morning watching tiny little fairy wrens and other birds go about their business in the chilly morning air and thought that we upright, hairless apes are pretty soft (including those who have an excess of body hair… eww).

On the other hand, birds are crazy. Anyone who has seen the otherworldly courtship behaviour of the superb bird of paradise, watched pink flamingos dance, looked in bewilderment at the antics of a cockatoo, or simply looked into the alternately witless then wicked eye of an emu knows this to be true. But then, try finding me any animal that isn’t at least a little bit nuts. I’m not saying that people are not nuts, clearly they are, especially the ones that choose to live in colder climes than this…

It appears that I am getting side tracked again, I should be telling you that all my post chemo appointments with the haematologist, oncologist and dietician went well last Friday, which they did. I should also be telling you that my hair is growing back, which it isn’t… the upside of that is that I have not had to shave for over four months now! And I should tell you that my tumour markers continue to behave themselves, there was a slight jump in one of the secondary markers (alpha fetoprotein, or afp), but that has now returned to normal. The relation between afp and active tumour growth is not as definite as is the case with my primary marker as afp can be elevated due to other factors, so it was never a major worry. In my case it was probably due to a slightly overworked liver, but it is all good now.

The only other thing that is new is that my skin is quite itchy. I have learnt that itchy skin is a fairly common late side effect of high dose chemo, and it will resolve itself as my body continues to rebuild itself and my presently sensitive skin toughens up a bit. I have also learnt that there are lots of these minor side effects that the docs never get around to telling patients about until they happen. Not a big deal.

In other news, we had to go back to Melbourne today to have my pre-op check up and fill in the pre-op paperwork as my operation has been rescheduled from the 15th of July to the 1st of July. This suits me fine as I feel I will be ready to cope with the operation by then, and it means that we should be able to get home a couple of weeks earlier. I believe that the 1st had originally been doctors preferred date, but it was unavailable until a cancellation occurred only yesterday, so things have worked out ok. We will return to Melbourne on Thursday afternoon so that I can have a CT scan on Friday morning, then I will be admitted to St Vincents on Sunday

Cheers, Pete.

A change of scenery.

Hi all,
Not much to report at this stage. I have an appointment with my haematologist tomorrow to make sure everything is on track, from my point of view things are going pretty well. My energy levels are still very low and it seems to me that I am taking longer to recover than what I have done in the past, on some days I get very tired without doing very much at all. Given that the treatment I had was much more aggressive than what I have had in the past I probably shouldn't be surprised that my recovery is taking a little longer.
I also see the nutritionist, who should be at last be happy with me as I have managed to put on some weight this week for the first time in ages inspite of the fact that my nutritional requirements continue to be very high. I am now less than 10kg down on my pre-treatment weight and continue to eat my way through a small mountain of food each day!
After this week we  at last have a bit of a break from hospitals and appointments so we plan to take advantage of that by getting out of town for a couple of weeks. We are going to stay with Robyns Mum for about two weeks, she lives on a lovely few acres a couple of hours outside Melbourne, so it will be great to enjoy the space, the fresh air and the peace and quiet. We will then move to my Mums place for the lead up to the operation, for the operation itself and during my recovery in hospital Robyn will probably move back into the apartment as it is nice and close to the hospital. I am not sure when we will be able to go home to Tasmania as it depends on how quickly I recover from the the operation and how many post surgery checkups I need, at this stage I am guessing that it will be late July or early August, I am certainly looking forward to getting home, whenever that may be.
Cheers, Pete

Surgery, Immunisations and stuff

Phew, it was a big day on Thursday. In the morning we walked the 1.5 km over to the hospital for appointments with the surgeon, the nutritionist and the stem cell coordinator (who later walked into a bar…), after that we had another short walk to catch up with a friend for lunch, then it was back to the hospital to pick up some medications and then we walked back to the apartment.  When we got home it was a matter of go straight to bed, do not pass go do not collect $200.

At the appointment with the surgeon I was told me all about the upcoming surgery, at the appointment with the stem cell coordinator I was told all about upcoming immunisations, at the appointment with the nutritionist I was told to eat more food. Guess which appointment was my favourite.

The surgery I am having is known as a bilateral retroperitoneal lymph node dissection. Be careful not to say that too quickly or you may require some surgery yourself. It is scheduled for the 15th of July and it will be done at St Vincent’s hospital instead of Peter mac as St V’s has a couple of addition surgical services on hand that are not available at Peter Mac. This will be my first major procedure to be done away from Peter Mac so we will see how we go, hopefully the surgeon is better at his job than I ever was at this game:

The purpose of the surgery is to remove two enlarged lymph nodes in my abdomen, one of these lymph nodes is low down in my groin near the psoas muscle, the other node is higher up and sits next to the aorta (the major blood vessel that goes down to the legs). Additional lymph nodes around the enlarged nodes will also be removed as a safety measure as there is a chance they may also be diseased, overall about 10% of my lymph nodes will be removed. 10% may sound a lot but like a lot of the body’s systems the lymphatic system has plenty of reserve capacity built in, so I shouldn’t miss them under normal circumstances.

The surgery itself will take about four hours. To gain access to the lymph nodes the surgeon will make an incision in my abdomen from just below my sternum down to a bit below my belly button, so I should end up with another fine scar to add to my collection. I will have to make up another story as to how I got this one, shark attack maybe? Done that one. Or defending little old ladies from a rampaging hoard of thugs? Dunno, I’m open to suggestions, here is a pic of an RPLND scar for inspiration, sorry if you are eating your breakfast while reading this:

After making the incision the surgeon will take out my bowel and plonk it on the table next to me while giving a stern warning to the nurses that my bowel is not a skipping rope and it should not be used as such, thank you very much, and no I don’t care how hungry your dog is, you cannot take it home as we need to shove it all back in somehow before we are done.

 Once my bowel is out of the way the surgeon will shove the other organs aside, identify the things like blood vessels and nerves that need to be protected and then get on with the task of identifying what should and shouldn’t be removed (“no nurse, that is not an enlarged lymph node that is his liver, we will leave it in as he might need it”). Once the diseased and suspect lymph nodes have been removed everything is put back where it should be and I am sewn up with a nice fancy needle work. Simple.

The usual warnings about this being major surgery with the attendant potential risks and complications apply, blah blah blah.

Recovery will require a stay in hospital of between five and seven days. Most of the post-surgery complications involve the bowel, which understandably gets a bit upset by being yoinked out of my body and then shoved back in again. We’ll see how we go.

 

I learnt some more interesting stuff during my appointment with my stem cell coordinator Trish (who has been an absolute marvel throughout this whole process). Even though my blood counts have returned to normal and I have a functioning immune system again it turns out that I do not have a fully functioning immune system.  The process of destroying my immune system and then restarting it with the stem cell transplants has led it loosing it’s ‘memory’ i.e. my immune system no longer fully recognises a lot of the diseases that I was vaccinated against as a kid and therefore it may not make an effective response if I am exposed to them, which leaves me open some pretty nasty infections. To combat this I will need to be re-vaccinated, as I will be receiving injections usually received by babies I fully intend to cry like a baby when I get them. The re-vaccination won’t happen for a couple of months as my immune system needs to build up a bit of strength of its own first, in the mean time I need to continue to avoid sick people, which is kinda hard to do when you have to hang around hospitals so much! We’ll see how we go.

Cheers, Pete.

Recovery mode, good problems to have and some not so good problems to have.

Considering all that has happened over the past four months one of the problems I now have is a pretty good one. I’m bored!
This has happened before when I was recovering from chemo back in 2008 and 2011. The boredom comes about because the fog and fatigue lifts from my mind much faster than it lifts from my body. My head wants to get out and restart my life (again), I want to start enjoying this amazing world we live in, I want do stuff, to take advantage of being so close to the city, but at this stage my body isn’t up for much more than a short walk each day. Whatever, it will pass as my recovery continues.
My recovery from the chemo is going along nicely and most of the side effects that can settle quickly have done so. My blood counts are good, even my haemoglobin is back over 100 for the first time in months. My stomach has settled so I am eating well, which is a very good thing as my body needs lots of nutrition as it repairs itself post chemo, a lot of patients continue to lose weight post chemo but my weight since I was discharged from hospital seems pretty stable. Apart from the occasional huge sheet soaking night sweat I am sleeping well too. The docs don’t seem to have an explanation for the night sweats beyond saying “yeah lots of patients report that”. The sweats only happen about once a week and they vary in intensity, but they can continue to occur with neither rhyme nor reason for months, I guess that when you consider just how much crap has been pumped into my body and how much stress it has been under it is not surprising that things like this occur, on the other hand, they could simply be due to one of the medications I am still on. Nonetheless it is great to be out of hospital and sleeping in a dark, warm, quiet and comfortable environment, it means the aspect of fatigue that is just caused by lack of sleep is no longer a problem and my head is clearer than it has been for months. The other aspect of fatigue, that caused by the chemo, will also improve a lot over the coming weeks but it will take months or possibly years to go away, it may never go away completely given how much chemo I have had over the years and indeed it is something I have been fighting since 2007. Another one of the long term issues recurring since 2007 due to chemo is peripheral neuropathy (numbness/tingling in the hands and feet, tinnitus in the ears). Its effects have been particularly detrimental to my tinnitus this time around, it is a bit of a concern as its effects on my hearing are quite noticeable, so it is something I will have to discuss further with the docs.
My hair has not started to regrow as yet, it is always something to look forward to as it is a mystery as to what I will get. Blond or brown? Dead straight or wavy? Course or fine? Maybe I should be offering odds, my money is on blond straight and fine, time will tell!
Cheers, Pete.