One and Two Half Men

I realise I have been a bit quiet over the last couple of weeks which may, of course, be a relief to many of you.

There are a number of reasons (including the Great Distraction which I will tell you about another time) but mostly revolving around a busy period family wise.

Anyway, to bring you up to date if you don’t know, Janine was back in hospital for the first of the additional cycles on the 11^th April, just days after the scans.  It’s funny isn’t it but all those times you want to get on with the treatment and there are no beds.  The time you want to delay a couple of weeks and the medics want to press on and a bed is available almost immediately.

Generally, the cycle went well.  Having gone in on the Monday evening, Janine was able to come home on the Friday afternoon.  There were some frustrations around the length of time it took to get all the drugs together so she could leave but, with nausea under control, the main side effect has been tiredness and a self confessed irritability.  As you will appreciate, it is that much easier to live with when it is self confessed.  I shall say no more.    

With Ellie at Spring Harvest when Janine went in, it was just me, Ben and Sam at home – the one and two half men of the title.  Those that know them will know that ‘two half men’ is not quite accurate.  The reference breaks down still further in that there was no drug or alcohol fuelled inappropriate behaviour (at least as far as I am aware).  I think we handled and looked after ourselves very well and I’m going to take this opportunity to praise the two of them for being two fantastic sons of whom I am very proud.  I love their company, their different personalities, their gifts and strengths, their strong opinions, their tolerance of what I understand is my increasingly wayward humour and much much more.  I could not want for better.

As Ellie returned from Spring Harvest, Ben set off for a few days in unserer ehemalige Heimstadt Düsseldorf.  That left one man, two women and one half man, which doesn’t flow as well as a title.   This weekend we are all at home enjoying the uncharacteristic weather as much as we can.  Janine is probably neutropenic and can’t really go too far from home and Ben is recovering from an asthma attack in Germany.  I need to thank this entry’s heroes, Joesph, Damaris, Joel and Benny, not only for rescuing him and getting him treated but for giving him such a fantastic few days.

Janine’s next cycle of treatment should start sometime around the 2^nd/3^rd May.  She has had a long conversation with the nurses this week about the need for the extra cycles and the possibility of having them at The Royal Berks in Reading rather than in London. 

On the additional treatment, it's self evident really but the team are concerned about Janine’s history and they simply want to give her the best chance of the cancer not returning.  Janine and the nurse even had a conversation about the number of cancerous cells that can be present yet not picked up by a scan and the need to get rid of any of those that might still be lurking somewhere in her body.  Though Janine is desperate to get to the end of all this, understanding just that bit more of the ‘why’ helps in facing it. 

Watching the London Marathon last week, I was reminded of running it for the one and only time back in 1998.  Around the 17 mile mark I began to suffer badly and actually stopped and moved to the side of the road not sure if I could continue.  Someone from Reading AC recognised my running vest, moved over, grabbed the back of it and got me running again with a simple ‘Come on Bracknell, back in the race …’.  These last two cycles feel like the latter stages of a marathon.  You are running on empty, the adrenalin no longer exists or works, everything hurts, you are not sure of the need to finish or the benefit of doing so yet somehow, somehow you clock off those final miles and cross the line. 

    

    

 

Remission

‘The state of absence of disease activity in patients with a chronic illness, with the possibility of return’  Wikipedia

Which is where we are. 

The scans were all clear and in the words of Celia one of the Haematology Nurses, ‘This is brilliant.  It is as good news as you could have’. 

We have so much to be thankful for and I need to thank you all again for your prayers and support over the last few months.  Janine is very relieved as she really had thought there would still be traces of the disease.

The good news is tempered slightly by the need for the consolidation treatment we had suspected would be required.  It was never going to be any other way really.  As we drove home we were talking through the possibilities which we understood to be 1-2 more cycles of chemotherapy or some radiotherapy.  That weekend away was looking a little closer. 

By the time we got home, however, the team had met and they actually want to give Janine 3 more cycles of chemo.  This isn’t what Janine wanted to hear and as we only heard this via voicemail there are some questions to ask in the morning. 

We splashed out on the way into Bracknell on a bottle of Prosecco from a well known German discount retailer.  Contemplating the three further cycles, Janine’s plan changed from a family celebration to drinking the whole bottle herself.  Fortunately, it is still on ice as, after all the excitement of the day, curling up on the sofa with ginger and lemon tea seems to be doing the trick.

It could be that the further chemo will start as early as next week.  I’ll do an update once we know.

The Appointment

Janine had her scans today as planned and we travel up again tomorrow to get the results.  Well, I say the results, we are going to get a preliminary view and then there is a team meeting at which the detail of any future treatment will be worked out.  At least we will know what impact the chemotherapy has had and whether any future treatment is likely.

Up until yesterday, it had been a really good week for Janine.  She recovered sufficiently to spend three mornings in school marking books (I know, somehow you are not surprised), came to watch Ben play football on Saturday morning and inspired him to complete his hat trick (well that’s what she is claiming) and then spent the rest of the weekend baking and getting a birthday tea ready for my sister and the family.

That might just all have contributed, of course, to her feeling unwell, grumpy, tired and lethargic yesterday and today.  I dare say the prospect of the scans and tomorrow’s appointment may also have been factors.

I’m sure you can imagine what it is like waiting for one of these appointments and some of you will know the experience personally.  I don’t want to be over dramatic but I have been thinking back over the different appointments we have faced, trying I think, to place tomorrow in its history and context. 

The story began with an appointment with an Orthopaedic Consultant in Windsor.  It was a dark December afternoon and I thought we were going to see the back and hip pain Janine had been experiencing cured there and then with a bit of impromptu physiotherapy.  I’d been told during a medical that Janine’s health was causing me anxiety and that I needed to take a lead in getting the problems resolved.  I thought this was what we were doing.  Instead, the consultant seemed immediately concerned, sending us round the corner to get X-rays from the hospital and asking us to come straight back.  Within what was probably little more than an hour our lives were turned upside down and we knew that there was a tumour in Janine’s pelvis.  The journey had begun.

Next came an appointment at Wexham Park in Slough for the results of a biopsy.  It was nearer to Christmas, cold and wet and I remember driving there feeling as sick as I think I have ever felt as I wondered if we were going to hear that Janine had just months to live.  I remember Janine asking me not to let her die there on the cancer ward, coming away with no real understanding of what Janine had, buying pre chemotherapy drugs that were never used, the call later in the day to say the diagnosis had been wrong and  Janine’s tears as we heard ‘sarcoma’ and all that entailed. 

Months down the line came the appointment where we heard that amputation was the only option.  It was late on a Friday afternoon and we were sat in a dingy, dirty, poorly lit visitor’s room off the treatment ward at the Middlesex Hopsital.  On one level, it was perhaps the most significant moment of our lives in the last six years.  So much changed from that moment, though in reality it had been changing all along.  What I remember now is the rising sense of panic I felt on the train home, struggling desperately to come to terms with what we had been told, wanting to believe that this was all wrong, that it could not be right, that there would be a miracle and a reprieve.

Moving on we entered the world of the check up.  First 3 monthly, then six monthly and then what we thought would be annually.  Though each appointment meant less chance of the cancer returning, each seemed to become more difficult as we knew there was more to lose.  Each day seemed so ordinary yet I would be telling myself that it would be on just such an ordinary day that we would hear the worst.  There would be no warning, just white spots on an X ray.  We would drive back, me usually the more exhausted, calling and texting and knowing that we could breath again  - that there were at least a few more months of freedom.

Eventually, of course, it would not be at an appointment like this that we heard that cancer had returned.  The lumps in Janine’s neck were too much of a warning and by the time we went for the results of this biopsy we knew what we would be facing.  We were also more experienced and knew more of the world Janine would be re entering.  This appointment was marked by, well I guess a resigned efficiency.  We thought we knew what we needed to know, what we needed to ask and what the process would be.

Which brings us to tomorrow.  How do we feel ?  I don’t know and perhaps that’s best.  I’ve sensed some anxiety in both of us.  I know we have vacillated between believing this is all done and dusted and fearing that the positive prognosis was all wrong.  This time tomorrow we might be able to so some planning, to accept some outstanding invitations, to see if we can get to the Lakes for a weekend and somewhere near a beach in the summer. 

As above, I expect we will actually be faced with continuing uncertainty and planning will be on hold for a little longer.  Even if Janine can walk way tomorrow then we are back to the check ups.  More than that, I would be amazed if, even if the scans are clear of all traces of the disease, we were told that no one was suggesting any further treatment.  I am still a lawyer at heart.  We like ‘belt and braces’ and making sure and I am sure medics are the same.

What I do know for certain is that I will let you know and as soon as I can.