Tumour Blog 5

03/09/2016

 

So, as always, I am now awaiting news.  I have an appointment with the Christie's Hospital on Wednesday 7 September 2016.  In the morning I am having a CAT scan on my whole head and a PET Scan for the neck downwards.  In the afternoon I am meeting the oncology/haematology doctors/team  They are looking for other tumours and to also see how much the current tumour has grown or shrunk (It may have shrunk because of the steroids - if it has, that is awesome news).

 

I spoke with my optician.  I had my eyes checked in September 2015.  It transpires that the photo they took of the back of my eye showed no damage and a very healthy optic nerve.  My field vision was in normal range and my eye pressure was also normal.  That at least helps us eliminate how long this thing has been growing.

 

I was originally told that the tumour is low grade.  Lymphomas (which is what it is) are given four classifications.  Low, Grade 1, shows in one place and is not apparent anywhere else.  Grade 2 has appeared in two places both local.  Grade three has tumours growing from multiple sites or at least two one on either side of the mid section (ie. one in my head and one in my groin, for instance) or where there are lots of tumours that are not in the same locality as each other.  Grade four is tumours everywhere.

 

Then there are Lymphoma B Symptoms.  This is where you suffer from sweating and night sweats and have lost over 10% in fewer than six months.  I have B Symptoms.  I lost 5% body weight in just four days last week.  I sweat a lot.  Prior to this I was always cold.  Now, now I am roasting all of the time.  I get to work in the morning (I walk to work) sweating lots.  I can't sleep under the duvet on a night and have to have a fan going because I just over heat so much.  B Symptoms suggest that the disease is well established. I only found this out a couple of days ago from my referral letter to the Christies.

 

B Symptoms also suggest that mortality is reduced.  Mortality of Grade 2 is about 86 to 91%.  I have emailed Cancer Research UK to ask what the stats are for B Symptoms - I have heard that it is about 80%.  Personally, I would still take 80% any day.  I can beat those odds.

 

As the tumour appears in three regions the new doctor I saw last week says that she thinks it should be classified as a Grade 2 - potentially 3 if there are tumours elsewhere.  It started in my brain, then appeared around my eye and, according to the referral to the Christie's, it is advanced in its surrounding of the right sinus region.  I didn't like the 'advanced' bit.

 

The new doctor thinks I need chemo and radio therapy.  Most of the sites I have read have also said that this tumour should be treated with chemo because it is so big and appears in three different regions.

 

So, I suspect the likelihood is I will have to have chemo.  I really wanted to avoid that, but this doctor says it is just too big to be done by radio alone.  The biopsy is being re-tested in Leeds and I should find out next week what their final classification is.  The eye hospital consultant thought that because it reacted so astonishingly well to steroids that radiation would be all it needs.   Frankly, I would now just prefer to wait to see what the new scans show and what the re-testing of the biopsy material shows and take things from there.  As I have always done from day 1 I am preparing for the worst news and if I get better news then all the best.  If I get the worst news then I am prepared.  I am 100% confident that my life is not in danger and is unlikely to be in danger at least for a while.

 

As is usual for lymphomas I have had to have an HIV, Hep B and Hep C test.  I went to the oncology blood clinic yesterday (Friday 2 September 2016).  Lots of people in there, all at various ages and all at various stages of cancer treatment.  You know what?  They were all laughing and joking, they were all cracking jokes.  No one was miserable.  Really, really cheered me up.  It really made me feel better knowing that there are other people out there who would rather face this struggle with a smile on their faces and a joke on their lips.  What would be the point in spending the last weeks or months of your life crying and being miserable?  Why not laugh and enjoy life?  It's part of the reason why I would prefer to prepare for the worst.  If you convince yourself nothing is wrong - how hard must bad news be?  If you're prepared for bad news and are comfortable with it, getting the bad news is not much of a shock and good news is for a celebration.

 

I am happy.  I know the next year will be difficult.  I know that I am going to really be hurting soon.  The brain in my temple now hurts a lot, and when it really hurts I have started getting really sick.  Last night was awful - I took a sleeping tablet and sailed right through it.  This thing will not beat me.  I was supposed to be flying to Cyprus yesterday for two weeks.  I can't go, for obvious reasons.  I went to the airport today to see of my friend who I was going on holiday with.  I was so gutted to be saying good bye to her - she flew off to the sun and I trudged back into Manchester in the pouring rain.  It really isn't fair.  But, that's life; we don't always get what we want.  I could have met the man of my dreams out there.  Maybe I will meet him in Manchester instead?

 

Anyway, so that is the news.  Wednesday is D Day.  They will know whether I am in trouble or whether I am in serious trouble.  The B Symptoms seems to suggest to me that I am in serious trouble.  But, I know I won't be dying any time soon, so I am prepared for what comes next.  It would have been much nicer to be facing it with someone special, but I have always faced life on my own, this will be no different.

 

 

 

Kalvin.

 

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