tooth hurty

Last week I developed a dental abscess.

It came on really quickly, a bit of toothache for about 24 hours then a lot of swelling and a temperature of 38.  That meant a visit to Velindre on a Sunday evening again.  Fortunately all my blood tests were normal so I didn't have to stay in hospital.

What it did mean was 1. antibiotics 2. chemo delayed for 2 weeks 3. removal of the tooth

When you're a trainee surgeon one of the first (and most frequent) operations you do is to lance abscesses.  The vast majority of these are very close to peoples bottoms and have to be done under general anaesthetic.  The smell from the pus that they contain stays with you forever and seems to cling to everything despite wearing a mask and gloves and a surgical gown.

Well- an abscess, is an abscess, is an abscess.  So if you have your tooth pulled out to treat the abscess the only way the pus can exit is straight into your mouth! Should be some emojis here of someone being sick!!!!

Anyway I haven't had chemo now for 3 weeks so Im feeling pretty normal physically.  For the first time in 2 months I was able to train in the boxing club.  Really easy to spur the others on by saying that they've got to beat the targets of someone who's got cancer!!

#thedress

Good news from the CT scan in that the tumour has shrunk significantly.
There is still tumour/scar tissue/whatever constricting the brachio-cephalic vein so Ive got to continue with the blood-thinning injections for the whole course of the treatment and reassess when I have another PET scan at the end of chemo.  I don't particularly mind as its better to be safe than sorry and surprisingly the injections are almost painless.  Top tip: try and inject the stuff as slowly as possible.  Im usually in a rush cos Ive already gone to bed and forgotten to do it.

My abdomen has bruises of various ages and hues all over it from the injections.  I guess I should have put a picture of it on twitter and see what colour people think it is, just like '#thedress'.
It looks black and blue to me but some may think it looks gold and white!!
(BTW I thought the dress looked gold and lilac in most pictures)

In Between Days

Ive now had my third course of Chemo and, at a rough estimate, taken over 600 tablets and injected myself over 50 times.

Its been a while now since my last blog (not that you've probably noticed).

Ive started to divide time up into chemo weeks (feeling abit rubbish) and non-chemo weeks (not feeling too bad).  Most of the time Ive been able to get out of the house and take the dog out and in the non-chemo weeks have even gone to the gym.  I don't think there is any right way to approach illness but this is just my way.  So far the week-on, week-off system had allowed me to plan my 2 weeks in between hospital appointments and chemo infusions.

I'd expected to feel a lot worse physically than I did and am lucky that that has been the case.  I guess that I have been a little bit complacent about the whole process, despite being told on a number of occasions that I need to think of myself as a patient a bit more (doctors always think they know best ha ha!!).  Im not trying to be big or clever or 'brave' (I might be stupid!!) Im just reacting to how I feel, and, fortunately that hasn't been too bad so far.

Prior to each course of chemo you have an appointment in clinic and have your bloods checked to make sure the chemo doesn't kill you off.  The clinic appointment definitely comes as a reality-check for me.  Whilst Im under no illusions as to what Ive got and its potential implications, hearing terms such as 'life-threatening illness' does tend to get my attention.  As I say, this isn't because I don't know that, its just something that I don't think about.

I also get told that the symptoms from the chemotherapy are going to get worse as the course goes on.  
That has been evident this week.  The start of this week was the start of a non-chemo week so the effect of the steroids (mainly restlessness and insomnia) and chemo (bit tired, strange taste) start to wear off  and I should start to feel more normal.  Come Monday though I was absolutely shattered and this meant I spent most of my birthday sleeping.  Ive also felt very nauseous and achy.  So for the first time since Ive started treatment Ive essentially been house-bound for 3 days and mainly been asleep!!

Using the word 'nauseous' always makes me think about the story of the medical student and the senior consultant (not too sure if its true but why let truth get in the way of a good story).
The Medical student has examined a patient and the Consultant peers down his half-rim glasses and asks the student what the patient is complaining of.  "The patient is nauseous" comes the answer from the student.  The consultant looks at the student with utter contempt and says "you, boy, are nauseous.  The patient is nauseated".
Ive just googled it and grammatically the consultant is correct.  I should change the word 'nauseous' in the paragraph above to 'nauseated', though both may be true and I may make people want to throw up!!

I have a CT scan this afternoon.  This is routine after 3 courses of chemo to check the effect on the tumour.  Im also having an injection of contrast to look at the vein to my left arm.  Maybe I get to stop my daily blood-thinning injection?

Happy Birthday

Id just like to take this opportunity to thank everyone for their birthday wishes and gifts.

Ive had so many cards and messages via Facebook etc. and people have been so generous with presents too.  On the non-edible side Ive had books and CDs and lots besides.  Then for afters: lemon drizzle cake; welsh cakes; chocolate pizza; haribos; chocolates.... and plenty of wine.

So whilst cancer is supposed to make you lose weight, high-dose steroids put it on.  So maybe I could eat and drink all of that and still remain weight-neutral!!??

Anyway thank you to everyone for their generosity, Im definitely stretching this lymphoma lark out til Christmas!!

I'll Decide

I really should just dictate all this nonsense and get my secretary to type it all up like normal!! It seriously takes me ages to type all this!!

Two rounds of chemo done and the third this week. That will be half way through as far as the chemo is concerned, with 2 Rituximab infusions to follow after that.  So far so good as far as side effects are concerned (apart from the previously mentioned steroids), I think Ive been pretty lucky.  No real sickness, not too tired and abit of peripheral neuropathy.

I don't know why but Ive felt pretty bullet-proof about the whole thing.  Im sure I can deal with whatever gets thrown at me as far as the physical side of things are concerned.  I don't believe that I can actually 'fight' the lymphoma and I don't like that being used as a term for some patients that survive longer than others. How could anyone suggest that anyone with cancer would fight more or less than someone else?  Some people live; some die; some die sooner than others.  It doesn't mean that they've fought more or less than the others, its just the way it is.  My body and the chemo will do my fighting, Ive just got to keep on being me (without hair obviously lol).

I believe there is a big difference between 'fighting' and having a positive attitude.  My positive attitude is taking a slightly less than serious view of the whole thing and I think/hope this blog helps me do that, without coming across as being too flippant.

Strange how you can surprise yourself though.  Perhaps Im not totally this 'what will be will be' kind of person that I thought I was.
Something that I saw today really stuck in my head, completely out of the blue.  Earlier this evening I saw a man wearing a baseball cap with "I'll decide" written on it.  Ive no idea what its supposed to relate to, but I seemed to relate to it.  Seems like there may be some of that 'fight' (whatever its supposed to be?) in me after all.

My futures not up to you lymphoma, its up to me - "I'll decide"

 

Hair today, gone tomorrow

Hair has now gone, down to the wood.  A whole new world of scalp care awaits!!

As I said bits started coming out on Friday and things gradually escalated over the weekend.  When I woke up on Monday morning it looked like a cat had slept on my pillow.

I did think that losing my hair was going to be a big psychological turning point in my attitude to my illness and thinking about it had actually made me feel quite upset.  However theres been no thunderbolt.

Most people seem to think that it suits me, that I have a nice shaped head!!  Maybe they're just being kind.

If I look in the mirror or catch a glimpse of myself, it just isn't me.  I can put my hood up and its me again, my face.  I can see my reflection in the window as Im writing this and it takes bit of time for me to register that that is me.

What is it that actually bothers me so much?
Its not the actual look of it because it does suit me in a strange way, I do have a pretty symmetrical head!!  And its not the fact that it says 'you have cancer and you're having chemotherapy', which is what I initially thought would bother me.  Its difficult to explain why I don't like it really.  It just isn't me and thats what makes it wrong if that makes any sense.

'Roid Rage

I hope I don't curse myself, but the actual infusion part of the chemo (thats the R-CHO part of the regime) doesn't seem to have given me too many side effects.

The killer for me is the 'P' part: Prednisolone, high dose steroids.  For a start they are issued as 5mg tablets.  That means I take 20 of them.  I thought they might make me feel euphoric but unfortunately Im agitated and restless during the day so I can't settle to watch TV or read etc.  (I had a great Amazon delivery of The Sopranos and Curb Your Enthusiasm from one of my colleagues that Im dying to start watching).  You just feel like you have to be somewhere else but there isn't anywhere else that you need to be.

The worst thing is the insomnia.  Even taking a sleeping tablet I was getting 3 hours sleep and then cos of the restlessness I couldn't even sleep during the day.

After about a week of this I was determined to get some sleep.  So a few glasses of red wine during the evening, then a sleeping tablet and a strong painkiller, should do the job.  I thought Id give them a bit of time to take effect before I went to bed.

Because of the risk of developing a clot in the vein to my arm, every night I inject myself with a blood-thinning injection (Fragmin). Its easy, normal syringe, just pinch bit of spare tyre on your abdomen and inject straight into the custard guts!! No problem

That night I also had to have my first injection of Filgrastim as well.  This helps you make more white blood cells to help fight infection.  I hadn't looked at this yet and had put the box straight in the fridge for storage a few days ago.  Anyway, same technique as the Fragmin, shouldn't be a problem, how difficult could it be?!!

By now Im half pissed and half asleep because of the tablets.  I open the box and find this, OMG what is going on, its got a spring in it!!

Im now panicking a bit.  Shit I'd better read the instructions.  I get the instruction leaflet out of the box and the writing is absolutely tiny.
Forget that, in it goes!! (The spring allows the needle to retract into the barrel to make it safer to dispose of). Panic over, bedtime, still wake up at 3 o'clock!!

More from the beginning

Blooody hell I wrote loads last night trying to get over Ebbw Vale's home defeat to Cross Keys, and then I managed to delete it all!!

Anyway, as I said, I bored a few people over Christmas and New Year but my arm was now swelling to the point where it was difficult to get my watch on.  I had also developed some lovely varicose veins on the front of my shoulder and chest.

So on returning to work on January 2nd I showed it to a colleague and we decided a further vascular doppler scan was necessary.  That didn't show any clot but suggested some sort of obstruction deeper to the area that could be scanned.
Next investigation was a CT scan with an injection to show up the blood vessels.  The injection is supposed to give you a sensation as if you've wet yourself but actually gave me quite a warm feeling down into my toes that wasn't unpleasant at all.  I have to say at this stage the worst thing I was expecting was to have a clot that would require blood-thinning injections and tablets.  I certainly wasn't expecting to be told that I had enlarged lymph nodes in my chest pressing on the main vein running from my left arm.  Even as an orthopaedic surgeon I remembered that stuff like that isn't normally very pleasant and no amount of googling told me any different.

Looking back I suppose I reacted to that news in a very 'surgical' way, by which I mean: lets find out whats wrong as soon as possible and get on and treat it.  By the end of the day I'd had: doppler scan; CT chest, abdomen and pelvis; MRI pelvis and biopsy of lymph nodes in my neck.  Thank God Id paid my national Insurance!
I was due to see an oncologist on Monday, lymphoma was top of the list as far as diagnosis

Velindre Cancer Centre is an amazing place.  Jam-packed full of patients but everything seems to just work.  However Im sitting there thinking "this is all wrong, I shouldn't be here".  I suspect that his is the view of almost everyone who comes here, after all its not a place that anyone wants to go to as a patient.  I think that this is something that the  staff all understand and it actually makes the whole experience a very positive one.

I discuss the likely diagnosis with the oncologist.  Lymphoma is top of the list but there are a few less common but not so nice ones brought up as well.  At this stage Im backing lymphoma, its a common cancer with a high cure rate and far better than some of the things we've discussed. Weirdly whilst Im there the results of the biopsy from the lymph nodes in my neck come back. These show CLL, Chronic Lymphocytic Leukaemia.  But it's thought that this is separate to whats going on in my chest and I need a biopsy of the lymph nodes in my chest.  Again 'surgical mode' switches on, I need this now!

Next an appointment to see the thoracic surgeon who will perform the biopsy.  If I didn't have any idea that something serious was going on before this appointment then I was in no doubt after!! I was just glad I wasn't some little old lady who thought she might have a bit of an infection!
Just to say that the surgeon I saw was from Eastern Europe and his communication skills weren't the best.  He asked me to describe what was happening so I told him about my arm and having the scans etc and he said to me "and that's when they found the nasty cancer"!!
Anyway he did a technically good job with some impressive shark bites on my chest.  Diagnosis back: Diffuse Large B Cell Lymphoma.
As Ive said I was quite relieved with that diagnosis in the end! Mind you, leukaemia and lymphoma??!! I must have been really bad in a previous life!!

Back to the Beginning

Back to the beginning.

 I first noticed something was wrong on the Sunday before Christmas.  After having a shower in the morning I noticed that my left arm was red and all my veins were very prominent (I said my arm!!). I thought I must have been standing with my left side under the hot shower rather than my right so waited for about 10 minutes.  Looked in the mirror, still the same.  The first thing that came to mind was that I had a clot in the main (subclavian) vein, not common but not really rare.

So like every other doctor, rather than asking a colleague to have a look and give an opinion and then suggest a course of treatment, best to go straight for an investigation.  We all love an investigation!!  2 very kind radiologists scanned my vascular system on a Sunday morning, all normal.  Great, crack on, it'll settled down.

But it didn't settled down. Nothing too drastic but the redness carried on and my arm started to swell. Couldn't complain really, it was the first time my deltoid and bicep on my left had been as big as my right 💪💪
So without being overly concerned I just moaned to various people over Christmas with varying levels of sympathy

The bobble hat

I'm not finding blogger.com very easy to use. No idea how to put pictures in or where to fill in the story from the start.  Since I've been on about the hair loss side of the chemo I guess that most of you will have guessed where the 'bobblehat4xmas' will have come from!! Yep I did have a bobble hat for Christmas (a very nice one too 3genuines.com) but I wasn't banking on the fact that the swelling I had in my left arm was due to enlarged lymph nodes in my chest.

Hairlarious

Thursday 5 February. My daughter and I share the same sense of humour. Every day when she comes home from school she tugs on my hair and says 'not coming out yet'. Until yesterday when some did come out!!
So do I go straight to the shaved head look which for me will be automatic Bader-meinhoff entry?
Also for me that would bring the whole thing to more of a reality as so far I have lymphoma but also I have all my hair and look really well (in fact a bit over well-nourished, ie fat, thanks steroids!).
A compromise has been reached. Haircut a bit shorter than usual (handsome I know) but it's all coming off if big clumps start falling out. Bader-Meinhoff has got to be a better look than chemo head

Toxic waste

Having been in a profession where I must write the date about 20 times a day, dates have now gone out of the window. I do know that it's Day 1 Chemo. That means 30 tablets for breakfast, not sure how that works out on a 5:2 diet!!
Connected up now to my R-CHOP infusion. it comes covered in black bags and the doxorubicin is bright red so it really looks toxic and like it should kill things!!! Hopefully not me!!