Done

When we were told back at Christmas that Janine’s treatment would last six months, I wasn’t sure that could be right.  Surely three to four cycles of chemotherapy couldn’t take that long when they were every three weeks.

But here we are six months later and with the treatment only just finished.  Not that we can complain as the treatment has done what it was intended to do and the scan Janine had last week showed that she is still in remission. 

We saw the consultant on Thursday to confirm the results.  He said what we all know which is that only time will tell if Janine has been cured but he thought there is a good chance.  We are back to living with uncertainty.  Not that it had ever really gone away and not that we don’t actually all live with uncertainty every day of our lives.  We just make assumptions. 

From here it is about Janine recovering fully and returning to the world of the check up.  The annual check up for the sarcoma and, initially, the three monthly check up for the lymphoma.   

Janine asked the consultant if he had ever seen a one legged sarcoma patient with lymphoma before.  No he said – you are unique.  Didn’t we all just suspect that.  Of course the question of whether he has seen a two legged sarcoma patient contract lymphoma remained unanswered but I suspect not.  He said he had looked back at the chemotherapy regime from last time and only one of the drugs carried the risk of a second cancer and at the time would have been considered low risk.  In his terms, Janine had been ‘triply unlucky’.

Where does faith come into all this ?  We can’t say that God will not let the cancer return.  He allowed Janine to have it first time round.  He allowed it to return.  He has allowed others to face it and even to die. 

We often quote Jeremiah 29:11 when we want to encourage people about the future God has for them. 

"'For I know the plans I have for you' declares the Lord, 'plans to prosper you and not to harm you, plans to give you a hope and a future'".  

I’ve been thinking about this verse for a while.  I’m probably slow on the uptake but ‘harm’ and ‘prosperity’ and ‘a future’ cannot mean what we immediately think they mean.  From our perspective God has allowed Janine to be harmed, not least in the amputation, and the future she has is not the future she would have hoped for.   This promise must be about ultimate fulfilment and ultimate realities and the things that God values not being the things we value.  It cannot be about comfort and ease and an absence of suffering or difficulty.  It applied to all of the heroes of faith described in Hebrews 11.  Some of them lived destitute lives, living in caves and holes in the ground.  Others were tortured, stoned, flogged, put to death by the sword and sawn in two. 

I’ve looked back at the entry I wrote on Promises in January.  We still have so much to be thankful for.  God has fulfilled and is fulfilling those promises.  We have had fantastic support and encouragement and help.  At this point, Janine could not be in a better position.  And much, much, more.

I am probably not going to blog every time Janine has a check up or every time she feels unwell.  That is just going to happen.  In fact, I think Musing and Leanings might take a break and return in a different format.

For now, thank you for following and reading over the last seven months and for all the encouraging comments, the emails and the FB messages.  I still wish I had been able to reply to everyone but I didn’t manage it. 

I shall leave you with a picture of the most irrepressible woman I know.

   

    

Sixes

Six games to a set, 6 balls to an over, 6 cycles in a treatment regime.

I may be stretching the point but perhaps there are some common themes to our summer.  Actually, that really is stretching the point isn’t it but I needed an introduction, Janine is lying on the sofa watching Andy Murray, I wish we were watching the cricket and it all sort of came to me.

The fact that Janine is lining on the sofa tells those of you who don’t know yet that she has finished that last cycle of chemo and is home recovering.  In fact, she has been home a week and, having recovered very well with minimal side effects, enters her neutropenic phase today.  She even felt well enough last night to grace the Brakenhale School Prom.  “I’ll only be an hour”.  Yeah, right. 

The plan from here is a scan on the 4^th July, the results on the 7^th and, provided these show she is still in remission (and there is no reason at all to think that they won’t) to have her PICC line removed and to begin recovery in earnest.  I might reflect then on the last six months (aha !) but I thought for now I’d finish with some pictures of the first and the last visits to T16.  I'll leave you to decide what they might show.  I'm simply going to thank God that we are here where we are now.

The Sixth Cycle

I imagine it is a sign that some of the intensity has gone out of a situation when the frequency of blogs on the subject dies down.  Well at least that’s what I’m telling myself as I realise I haven’t written for a while and haven’t even kept you up to date with how Janine fared with the 5^th cycle of chemotherapy.  Very well is the answer to that and it was the best cycle yet both in terms of the side effects during the treatment and in the recovery.  Neutropenia passed by without so much as a degree in raised temperature. 

This is not the most elegant description and does not do justice to what remains serious treatment but these last few weeks really have felt like the fag end of a process.  You can feel thoughts starting to turn to life post treatment and the new - new normality to which we will need to adapt.  We’ve started asking about the programme of scans and check ups, the symptoms to watch for and how all this will fit with the scans and check ups for the sarcoma. 

Janine asked twice during cycle 5 whether cycle 6 is really necessary and was persuaded both times that it is though by different (and probably self-evident) arguments.  One that, should the cancer return, she would forever be wondering whether the 6^th cycle might have prevented it.  The other that the likely next form of treatment would be stem cell transplant and she would want to give herself the best possible chance of avoiding that.

So we wait for the sixth cycle.  It should in theory have started this last week but didn’t.  Having thought that it would be good to have half term at home, Janine had asked if the cycle could be put back to at least tomorrow.  Last weekend, however, we talked it over and decided she might as well get on with it.  A bed became available on Wednesday but a random stomach upset meant she couldn’t be admitted.  That cleared up on Thursday but by then the bed had gone and it has not yet become available again.  We had thought she might be able to get in this evening but now even tomorrow is looking unlikely as there is no movement on the ward.

One of the things we can be thankful for over the last few weeks is that Janine did make it to her brother Matthew (Theodore  - it’s a family joke and you had to be there …)’s wedding to Sarah last weekend.  As some of you know, this was naturally a big date in The Patient’s calendar and she was determined to get there.  Dresses, shoes, bags and bling were purchased, wigs restyled, nails manicured and hotels booked.  The question was whether she would feel well enough to be there and, well, she did which was great for all concerned.  We had a thoroughly good time.

There really isn’t much else to tell you unless I were to bore you with the mundane comings and goings of what, for the most part, has been normal family life for the last month.  I can’t even say I have had any musings or leanings that are worth sharing.  I’ve sold our second car, been attempting to flog everything that isn’t nailed down on ebay, and generally trying to clear and tidy up - all of which you might want to analyse (reverse nesting of some sort ?).  I also got unduly excited about the most efficient way to hang the washing on our new rotary drier – but I’m taking that as a sign of the phase of life I am in and the assumption of certain domestic duties on my part the last time Janine was unwell, rather than a sign of impending emotional crisis.

I shall let you know when this cycle is done.  After that, we shall see where this goes.

Enjoy your week.    

  

A week is a long time in .............

After a week waiting for a bed, Janine went back into hospital this afternoon and will start her 5^th cycle early tomorrow morning.  I expect that is dependant on the blood and kidney function tests she had this afternoon but I am sure they will be OK.  Put it like this, I wouldn’t want to be the one assigned to tell her they are not and that she needs to come home and wait until either her blood levels or kidneys have recovered.  If she were told, as before, that her kidneys have suffered and that she can’t have the last two cycles at all, well that would be a different story.

Whilst Janine underwent some tests, she also undertook one.  I’m afraid I don’t know the detail or the background but she seems to have got involved with a lemon drizzle cake tasting competition amongst the nursing staff.  I’ll post a photo below and try to establish the outcome for a future blog.  I wonder, however, if this is all part of the Lib Dems’ newly discovered plans for the NHS …….. ?  Lemon Drizzle  …………. no I won’t go there. 

The armchair psychologists amongst us will all, I expect, subscribe to the commonly held theory that what emotionally turbulent periods like this need is a distraction.  I hinted last time I wrote that there had been such a distraction for me over the last few months and, as it reached its conclusion last week, I feel I can now openly confess what I have been up to.  No, I wasn’t involved in any of the planning for the wedding (best I keep off that subject frankly).  Instead, and this is very mundane and you can stop reading now if you like, I was a candidate in the local elections.  I know, I know, I know ………. what was I thinking and, as some of you said to me, don’t you already have enough to do ?!  In truth, I had committed to this just as Janine was diagnosed and we agreed I should pursue it as best I could given that the next elections are 4 years away.

I stood for the ward where we live and, in my more realistic moments, knew we required a major swing away from the incumbent Tories and the Lib Dems if we were to stand a chance of winning.  In the end, we put a major dent in the Tory majority and saw the Lib Dems off but it was not enough.  As I said on Facebook on the night, for the time being, the wonderful people of Wildridings and Central have released me to spend more time with my family and pursue other options.

The campaign was a great experience and even though the timing was lousy, I would do it again.  I met new people and made new friends.  I found areas of the ward and houses which I did not know existed.  I met some very angry and distressed people, some disillusioned people, some committed people and some apathetic people – all in the same street.  I found strong, established Tory voters living in very close proximity to self declared socialists.  I found out that I can travel a long way out of my comfort zone for an extended period of time and still survive.  I saw a dark competitive spirit within me that, whilst it may not have a killer instinct (ask my dad about the Surrey County 800m final in 1982) could, if unchecked, lead me into bitterness and resentment and to despising people I may not like but cannot afford to despise. 

I was blamed personally for bankrupting the country and ‘letting in all those immigrants’, discovered that the modern letterbox is an instrument of torture, established that one man’s carefully written expression of social democracy is another man’s junk mail (and he really really doesn’t want it put through his door), and went through a pair of shoes.  I was canvassed by our Tory MP who clearly hadn’t read his canvassing sheets, and was told I was a disgrace for delivering leaflets on the day of the wedding when it was already all over (even the kiss), the person who spoke to me wasn’t watching the coverage either and no one had told me we had created a new Sabbath.  I became sick of seeing my face on the leaflets we were distributing but obsessive about getting into secure blocks of flats to deliver them.  I found on the night, to misquote the advert from one of the internet gambling companies, that where a cross appears on a ballot paper really does mean more when your name is on it.  And much, much more.  I do feel ever so slightly bereft now it is all over.

As this has been more of a leaning than a musing, I’ll finish with some thoughts on fair votes.  The ‘no’ campaign for the referendum made great play of first past the post being about one person/one vote and therefore ‘undeniably’ fair.  Whilst I appreciate that AV may not have been the complete answer to this, what that argument fails to recognise is that, when it comes to the composition of a Council or a Government, we may all have one vote but under constituency based first past the post, those votes do not all carry the same weight.

In the Bracknell local elections, for example, 63% voted Conservative, 29% Labour, 4% Lib Dem and 2% Green (plus some others).  With a Council of 42 Councillors you would think that would mean 27 Conservatives, 12 Labour, 2 Lib Dems and 1 Green.  Instead what we have is 40 Conservatives and 2 Labour.  Is that a fair ?  I’ll leave it with you – though it seems you won’t now really need to think about it for a very long time.

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.