Friday, 31 December 2010

The LOL before the storm

First of all, thanks for all the comments, FB messages and txts.  They are really appreciated.  I was going to try and reply to all of them individually. Yes, I know ......

We heard more about Janine’s chemotherapy on Christmas Eve but have been waiting for a letter to confirm the details.  The letter didn’t arrive until this morning and wasn’t quite what I had expected as it was simply a copy of the Macmillan info sheet on the particular regime to be used in Janine’s treatment.

That means we have a few more questions but what we do know is that the treatment won’t start until the week beginning the 10th January.  As we had thought, Janine can’t have the chemotherapy regime that would usually be used first off with this cancer.  Instead, it looks as though she will be having a form of the regime that would be used if this cancer had returned.  She won’t, as we had hoped, have the chemo as an outpatient but will be in hospital for a few days for each cycle.  When the nurse spoke to Janine she said that she will need to have a carer with her during that period as there could be neurological side effects.  Three to four cycles appears to be the norm but we don’t know how long it will all last and are still assuming we are looking at the next six months in total.  We are going to be heading back to the wig shop and digging our some favourite headgear.    

If, like me, you are over inquisitive and want to know the details then have a look here  or here .  If you do look then Janine is going to have the Rituximab so her regime will be R-ICE. 

It has been a bit of an unreal Christmas week but a good one and, as ever, we have so much to be grateful for as we head into 2011.  The prospect of the treatment has seemed to hang more over me than Janine.  She is still feeling well.  Occasionally she is very tired but no more so than normal for someone who continues to live life at 100 mph on one leg.  She went swimming yesterday morning, figuring that public swimming pools are not going to be the best environment once the treatment starts. 

Last time Janine was unwell, I had a couple of sessions of counselling with the local hospice.  The image of cancer and cancer treatment as an emotional roller coaster might be a cliché but it was an image that I found really helpful in explaining why I felt the way I did.  The counsellor said to me that if we were on a physical roller coaster which was doing to us physically what was happening to us emotionally through the treatment then we would be not just feeling unwell but desperate for it to stop so we could get off.  I hope this isn’t over dramatic but, in the last few weeks, I have felt us first join the queue then stand in line and then get into the car.  Now we wait to see if this is going to be the tame dragon ride at Legoland or Thorpe Park’s Colossus. 

I hope you all have a fantastic evening bringing in the New Year.  Tomorrow I’m going to try and post some of the promises I feel God has given us for what it will hold for us.    

Tuesday, 21 December 2010

The story so far

Apologies if this is a long entry but I want to use it to bring the story up to date.  The Blogette (aka The Student) tells me I should keep entries short.  I should bow to her wisdom and experience but will break the rule just this once. 

One of the coincidences around Janine’s cancer diagnosis this time round is that it came almost six years to the day since she had the first.  There cannot be any significance in that but there has been a strange familiarity to the last few weeks and the process we are going through.       

There are also some distinct differences, of course.  One is that Janine is actually feeling quite well and not in the pain she was in last time round.  Amputation is also not an option – although I am sure there are going to be times when we all wish it was a possibility (its OK, she has heard that joke – a number of times).  As you will see below, though there are complications from having had cancer before, this is not the original cancer returning and that is a positive.

We think it was the end of September that Janine felt as though she had swallowed something sharp and irritated her throat. The sensation came and went but she occasionally had difficulty swallowing.  She went to see our wonderful GP and was referred to an ENT specialist with an appointment in December.  We debated what it might be, one theory being voice nodules which seem to be in vogue at the moment – not just with celebrity vocalists but ‘plain old’ teachers as well.

It was the beginning of November when Janine noticed a lump in her neck.  It was painless and looked like a swollen gland but she didn’t seem to have an infection and none of her other glands seemed to be affected.  I can remember a sinking feeling as she told me. 

Janine went back to the GP, who confessed that Janine scares him (Janine says she scares herself.  She certainly scares me) and suggested going straight back to the oncology team who have always said she can go straight back with anything she is not happy about.  That led to a CT scan up in London and then a biopsy.

Between the scan and the biopsy, Janine had the ENT appointment locally.  We went to that in the hope that we would be told this was nothing serious but was throat related and could be cured easily.  Instead, it was another step in being taken very gently towards understanding that cancer had appeared for the second time.  The doctor had the results of the scan and was fantastically open and honest with us, reading the results and explaining that this was most likely to be a lymphoma of some sort.

The biopsy took place a few days later.  Again, Janine had a great doctor carrying it out.  By now we knew there are a number of lumps and Janine was able to see them on the ultra sound.  The doctor was prepared to say that it was very unlikely they were benign. 

This all meant that by the time we went up to London to see Janine’s Oncologist, we were fairly certain we knew what we were going to hear.  There is so much I could write about what it feels like to go for one of these appointments or for one of Janine’s check ups.  The first time I wrote this entry I started to do just that and began to philosophise on cancer and its impact on our lives.  I soon realised that I was rambling incoherently and, well, it wasn’t going to be helpful to anyone and I am supposed to be keeping this short and factual !

So back to the story.

In that appointment and the subsequent appointment with the specialist who will now be treating Janine, we heard what we were expecting to hear which is that Janine has Non Hodgkin’s Lymphoma in her neck and chest. 

For those who like the detail, it’s a diffuse large B cell lymphoma which is the most common type of Non Hodgkin’s Lymphoma.  It is high grade and is at stage 2A which means it is in two places but restricted to the area above the diaphragm.  The A means that Janine does not have any B symptoms which would be more serious.

If you want to know more you can read the sections on the Cancer Research or Macmillan websites which are very good and even include diagrams.  I kid you not.

The real question, of course, is what does this all mean.  A friend asked me in the last few days just how serious this is because all these descriptions and stages and grades mean nothing to us really.  I just write them down confidently, merely repeating what we have been told and what I have read.  I even said to the consultant that everyone had been so positive talking to us that I almost felt that I had been told Janine has a cold, that she will given paracetamol over the next six months and then everything will be fine.

The truth is, of course, that this is serious but that the cancer is treatable with more chemotherapy.  If this was the first time Janine had had cancer then the survival rates (living for 5 years beyond the diagnosis) are around 70% which is very good and certainly better than the 50/50 prognosis she had last time.  As this is a second cancer (and for the moment being taken as a side effect of the drugs used in the chemotherapy last time), all we have been told is that the percentage is less.  As above, it is still better than having the previous cancer return.

The treatment is going to be six months of chemotherapy and possibly some radiotherapy.  We are waiting to hear what form the chemotherapy will take as one of the drugs that would usually be used to treat this cancer is one Janine had last time around and which she therefore may not be able to have again.  We should hear on Christmas Eve (after a team meeting – Janine likes to keep teams occupied).  We are also hoping to hear then the results of a somewhat painful bone marrow test which will tell whether the cancer has spread there and could mean very different treatment. 

We know that nothing will happen until the New Year, which is a great relief and means we can enjoy the Christmas we have planned.

Thanks for sticking with this.  Thanks to those of you following as well.  God has surrounded us with such fantastic people.  And as I said in the first entry, I really am hoping that this will be a blog that you actually rarely read and forget even exists.

I’ll post again Christmas Eve if we hear anything of note.

Sunday, 19 December 2010

An Introduction

Well these aren’t really the circumstances in which I had envisaged starting a blog and had I listened to a friend’s advice a while back, it would have been different.

But I was disobedient (again) and we are where we are.  What will follow over the next few weeks and months will be updates on Janine’s treatment and health for those wanting to know what is happening.  For that reason, you will understand that I hope this will be the most factual, boring and uneventful blog you will ever read, as Janine sails through the treatment and out the other side.  I have a feeling I won’t be able to resist the odd thought or musing or even rant but my advice on those blogs would be to scan lightly and move on.

Now to get this thing set up …..   ‘ELLIE!’