Tuesday 29 December 2009

Changeover day, number crunching and more "thank you"s

It's an in-between sort of day - Christmas is over but New Year has yet to arrive; Jack departed for Bristol just as George arrived from Manchester; the weather can't make up its mind whether to rain, sleet or drop a few snow flakes. Time to catch up on some of the things we've been putting off.....

Because Steve's chemo treatment involved many more visits to hospital than the standard treatment, the company that makes the trial drug Velcade will pay for our travel and parking expenses. I spent some time this afternoon going back through the blog noting dates of visits specifically relating to chemo and associated assessments, and collecting together the parking charge receipts.  There were 32 visits in all between 10 June and 11 December, a total of just over 350 miles traveling back and forward between home and the Cancer Centre. Add to that the parking charges, and it begins to mount up.....

Looking back over the blog has also stirred up lots of memories - cannulas, blood tests, CT scans, X-rays, assessments, days out in "rest" weeks" between the long days in hospital for chemo. Still the side effects of the treatment linger on, but to a lesser extent with each day that passes.  A friend who has been through the chemo experience assures us that one day Steve will wake up and realize that he no longer has any side effects - we can put the sick bucket back in the cupboard and he can enjoy a meal without wondering whether it will be followed by nasty "off" flavours.  Thanks for the reassurance, Meg - much appreciated.

Re-reading the blog also reminded me of Jack's efforts to raise funds for cancer research by running in the Bath Half Marathon on 7 March 2010. Many thanks to Sarah and to Hil and Steve in Australia who have already sponsored him, taking the funds raised so far to 47% of his target.  The link to his Just Giving Page is on the right...If you have any money left after Christmas, please encourage the boy to carry on training through this horrible winter weather - he'll need to put in a bit of extra effort after all the mince pies he has eaten over the last few days!

Last but not least, we wish you all a very happy, healthy year in 2010 and look forward to seeing some of you here on 2 January!

Sunday 27 December 2009

the West Wing

We're going to be in the West Wing!

No.  Not the TV programme, but the new West Wing at the John Radcliffe Hospital here in Oxford, where three of our artworks have been selected to be hung in wards and private rooms!

Here are Steve's images:  

and here is mine:

I do hope that patients and visitors alike find them positive and uplifting.  Having spent so much time hanging around in hospital in the last six months, we fully appreciate the importance of enjoyable artwork to look at! 

the festive season

The run up to Christmas
The run up to Christmas felt like a bit of a sprint finish, but we got there in the end: last presents bought, wrapped and put under the Christmas tree; cards hung up and more news to catch up on; the festive season menu chosen and food shopping finished; all the time keeping an eye on the weather forecast as the snow and ice wreaked chaos on roads and public transport. The celebrations kicked off with pre-Christmas drinks with friends on Wednesday which helped to get us in a festive mood. A last minute reprieve in the weather meant that both Jack and Katie arrived home safely and on time on Christmas Eve, and all was well.

Christmas Day and Boxing Day
After all the rushing about, it great to chill out on Christmas Day with a lazy breakfast, a visit a few doors away to feed a friend's cat, followed by presents, from fresh flowers to fabulous things to eat and drink, homemade goodies, feasts for the eyes and charity presents with a healthcare theme (very apt) amongst other things!  Many, many thanks to everyone for your generosity! The Christmas meal went off without a hitch and we enjoyed an evening of tennis, motor racing and trivial pursuit on Jack's new games console.

Katie's friend Emily joined us for our Boxing Day walk. Other years we have headed for the hills (well, they count as hills around here - Shotover, Wittenham Clumps and the White Horse Hill).  This year, we stayed closer to home and on the level, with a walk along the west bank of the Thames as far as Godstow, a pit stop at the Trout for refreshment, and home via the wide open spaces of Port Meadow, trying not to slip on the icy patches or sink into the mud where the ice had melted! 

I put on the evening meal to cook for two hours before we were due to eat.  However, when we gathered in the kitchen a couple of hours later to prepare the vegetables, Steve noticed that the oven had only just come on...Not only had I set the oven timer for two hours, I had also inadvertently delayed the start of cooking by the same length of time. Doh!  So we were on to Plan B, something quick and simple that we could cook and eat in time for two of us to go out to the cinema as planned.  Thanks heavens for pasta and sauce - not our usual Boxing Day meal, but it did the job!  

Unbeknown to us, the hiccup on the catering front continued....Jack and I returned from the movies to find the gammon joint still in the oven, some two hours after it should have come out, while Steve sat in blissful ignorance in the front room, finishing the bottle of wine, having forgotten about it completely!    Ah well, that's one way to get very crispy crackling!

And now....

Today has been a lazy day, catching up on sleep, news from friends and thinking about the rest of the holiday and the approaching New Year. Unspoken, but there in all our minds, are thoughts of how Steve will be this time next year.  Although the side effects of the chemo still haven't gone completely, in other respects he appears to be well and continues to hold his own in the battle with Leo. Our first Christmas since diagnosis is over. May there be many more to look forward to in the future, as well as all the special occasions in 2010!

Monday 21 December 2009

the shortest day

It was a very jolly festive gathering in Bristol yesterday. Katie and George drove through the snow from Manchester to get there, and made it only a little bit late.  Our great nephew Zac entertained everyone delightfully.  Nick and Kate's "bump" was much in evidence, but wisely decided not to arrive early. How wonderful to think that he/she will be joining in the fun next Christmas!  In fact, everyone was in good form for our indoor picnic, even Steve who had been feeling a bit sorry for himself with a cold in the run up to the event.

We erred on the side of caution and decided to come home afterwards, rather than stay with Jack.  Looks like it was a good decision in retrospect.  Bristol was snowed in today, so we might have had a few problems getting away. As it was we've had a productive shortest day - the last packets and cards posted, the Christmas bird bought (so don't worry Jack and Katie - there will be food on the table on Christmas Day!).  We even managed to fit in a good deed - finding a purse full to bursting and taking in into the lost property office at the Police Station. I do hope the young lady who lost it thinks to give them a call.

As a photographer, I would have loved to have woken up to a blanket of snow. Taking that hat off, I'm so relieved that we have managed to escape the worst of the weather, which has been closing in around us but not made life horribly difficult so far, other than icy pavements which are bad enough. Thank goodness we don't have to go to hospital for chemo tomorrow.  What a relief that's behind us for the foreseeable future.  My heart goes out to all those still going through the treatment in the festive season......

Not long now; things are coming together nicely.  Hope your plans are working out too, wherever you are and whatever you are doing.  It's been so good to get all the Christmas cards and letters and to find out what you have all been up to - keep 'em coming!  And be careful out there....

Saturday 19 December 2009

one step forward, two steps back

Just when we thought we were moving forward, the going gets tough again.  The tiredness that Steve has been experiencing since his flu jabs on Tuesday has turned into a cold - the catarrh is making him cough and this seems to have triggered a worsening of the nausea and sickness that had been getting better slowly. So much for putting the emergency bucket back in the cupboard....

As it's easier to handle such feelings at home, especially first thing in the morning, we have abandoned plans to go to a festive gathering in Wells tonight (sorry, Chris - catch up with your in 2010); cancelled the B&B (but still have to pay due to the short notice...ah well, such is life) and will have a chilled out day at home instead.  Steve can rest and recuperate while I wrap the family presents and prepare food for tomorrow's gathering of the wider Wride clan and partners.

Fingers crossed, Steve will feel like traveling tomorrow. He's been rather dispirited these last few days, probably because of the cold developing. It's that time when you look back over the old year and forward to the new one....I think that looking back has rekindled those feelings of anger, helplessness and frustration we experienced in June, when we first heard about Steve's condition. 

Looking forward, Steve is wondering just what to do - he doesn't feel in a position to make long term plans; the things he ought to do in the short term about legal matters, financial affairs and responding to the solicitor are not very appealing; the structure imposed on our day-to-day lives by the regular visits to hospital no longer exists, and he finds himself drifting, with little or nothing at the end of the day to show how he spent the hours.  When you are acutely aware of your own mortality, a feeling that that you have been wasting time does not put you in a positive frame of mind... 

Some how, he needs to find a focus or target that is challenging and rewarding, but still achievable in a limited period.  Something to work on, I think.

Friday 18 December 2009

moving forward

Barring the unexpected, Steve had his last hospital appointment of 2009 yesterday.  Nothing to do with mesothelioma, but a return trip to the orthopaedic centre for the team to "review" his carbon fibre finger joint, which replaced the arthritic joint four years ago. It's still there. Still working. No oil required.  

He was asked about his general health so had to tell them about the cancer, which rather puts his arthritis in the shade. Nevertheless, they have invited him back again in 12 months to see how the replacement finger joint is faring. Let's hope that we are still here in a year's time, moaning about a hospital appointment so close to Christmas....

We have also had what I hope will be the last trip to the GP in 2009: we both had our swine flu jabs on Tuesday and Steve also had the seasonal flu jab in his other arm. Poor thing - both arms aching, not just one.  Our arms are still a bit tender, and Steve has also been feeling tired these last couple of days, which we assume is the side effect of the two flu jabs - just when he's almost recovered from chemo side effects....It will be a good day when he finally decides that it's safe to put the emergency bedside bucket back under the kitchen sink!

With hospital and doctor's appointments finally over for this year, we can move forward with preparations for Christmas. Time to wrap some presents, me thinks....

Wednesday 16 December 2009

Six months on

It's six months since Steve was diagnosed with mesothelioma and I'm pleased to say that he's still going strong. 

Looking back, I have to admit that the chemo was grueling, particularly the last few cycles, where the side effects never really eased off during rest weeks.  Indeed, they still haven't disappeared completely, but we are getting there.  It is a relief, however, to be able to look forward to a break from hospital visits - in the last six months, there have been only three whole weeks in which we didn't have one or more trips to the cancer centre.  It wasn't just the hours involved in hospital and traveling there and back, but the way in which the time between visits was so disjointed - never more than 2-3 days at a time to get on with life.  

In some ways, we are learning to live with Steve having an incurable illness. It helps that, at present, he is not having difficulties breathing and his mobility is not affected, so life goes on as usual in many respects - we still have to do normal things, like shopping, cooking, household chores (although some have been ignored for as long as possible.....) It's always in the back of our minds however, that this could change very rapidly at any time, and then there is the prospect of more chemo - not something either of us are looking forward to. 

That said, although finishing the last course was a relief, we feel a little like we have now been cast adrift in a vast ocean, at the mercy of the tides and the weather.  What do we do now? What happens next?  It wasn't something we talked to the consultant about at the last assessment visit, other than to make an appointment to see him in three months time for another CT scan and X-ray to assess any change.  After feeling that Steve has been the centre of the team's attention for six months, it now feels rather bizarre to have drop off the radar completely for the next three months.  

However, we are not sitting idly by waiting for the worst.  Since the problems with his white blood cell count during chemo which lead to treatment being postponed three times, Steve has been taking vitamins, zinc and omega fish oil supplements to help boost his immune system.  He hasn't had a problem since, even though he felt rough during the last few cycles.  So that regime continues..  

Our continuing quest for information about meso treatments threw up research about the effectiveness of a medicinal mushroom Agaricus Blazei Murill (ABM), which is widely used in Brazil, China and some other European countries where it grows naturally.  It was reported recently in the Journal of Medical Case Reports that a mesothelioma patient who took ABM had a clinical tumour disappearance during a 29 month follow-up period.  We are not assuming it will be a miracle cure for Steve, but it fulfills the need we feel to do something active in the fight against Leo. Guess what's on the breakfast menu every day now...

So - here we are, six months on, still going strong, in spite of falling into emotional pit holes occasionally, and trying not to be too daunted by what inevitably lies ahead at some point in the future. We are determined that it won't spoil the here and now, if we can possibly help it.  And on that positive note, who is going to invite us to a New Year's Eve party to remember?

Tuesday 15 December 2009

one small step and lots of celebrations

Unless Steve has a late night panic, this is a special day - the first time in ages that he not needed to take an anti-nausea tablet. One small step, but a good sign, nevertheless!  Cause to celebrate - which we did this evening at the Oxford Studio Christmas meal, with our friend Ruth over from Vietnam for a short stay.  We toasted Steve's success at keeping Leo under control and my success in the RHS Photography Competition - more of which when it becomes public officially!

The 60th un-birthday party celebration on Saturday was very enjoyable - many thanks, Elizabeth! The wine flowed freely; there was excellent home-made food; live music...and we were weren't the only ones dancing!  As well as meeting E's family, I bumped into my former tutor, John G, from student days, and David C from my time at Oxford City. We also spent some time singing along with, and talking to, a couple whose son worked with Ruth's daughter. They had also visited Vietnam, where we still hope to go next year. When we walked into the treatment room at the GP surgery today for our swine flu jabs, there was the same lady we had been talking to on Saturday night.  It's a small world....

Slowly but surely, plans and preparations for Christmas are coming together.  The cards are posted or have been delivered locally, by hand.  Most of the presents are sorted out.  The tree will come inside tomorrow to be decorated and a Christmas wreath will go on the door.  And we might even have some snow.....

I'll try to post some pictures soon. This blog is a bit light on images for a pair of so-called photographers!

Life is almost close to being normal.  It feels good.  We do hope to see lots of you at some point or other, over the festive season!

Friday 11 December 2009

He said... We said.... And the bottom line is......

The hospital clinic was running more than an hour late yesterday, so they kept us in suspense about the outcome of Steve's test results after a full treatment of Cisplatin and the trial drug, Velcade.  

When we finally saw the consultant, he said
"Do you want to know the bottom line?" 
We said "Yes", nervously.  
He replied "No change - possibly a millimetre smaller here and there, but not what we would call a significant response".

So there you have it.  Five months and six cycles of chemo later, and we're still in the same place.  Bit of an anti-climax, really. All those hospital visits, cannulas inserted, bloods taken, chemo administered, sickness, nausea, tiredness and such like, and Leo is still the same size. Still, he isn't any bigger, so he's not winning the fight.  May be we have the chemo to thank for keeping him in check.  Only time will tell if that's the case.

Steve still has the standard chemo treatment as a fall back option should he need it, and there are likely to be be other drug trials in the future which may be worth exploring. Having chemoembolization in Frankfurt (like Debbie in Plymouth) might be a way forward, whilst taking more natural supplements to boost immunity won't do Steve any harm, and might do some good.  Likewise good diet and exercise.  

We can take comfort from the fact that a normally aggressive cancer is still stable, nearly six months after diagnosis.  And the side effects of chemo are slowly slowly wearing off.  Hallelujah! 

Although it wasn't the outcome we had been hoping for, it was the one we were expecting, rather than the one we were fearing. Steve said, yes, I'm OK - go to Bristol, so that's what I did.  It was great to meet up with my work friends, albeit for a short while! When I returned home today, there was good news: three of our pictures were sold at the Radley College exhibition; the local NHS Trust has bought three more of our prints (two of Steve's and one of mine) for the new West Wing at the John Radcliffe Hospital here in Oxford, and the RHS has shortlisted two of my images in this year's photography competition.  We may have reached stalemate with the tumour, but at least our artwork seems to be enjoying some success at the moment.  

We bought a Christmas tree this evening.  There is a 60th Un-Birthday party to look forward to tomorrow.  I'm now on leave from work for three weeks, so plenty of time to get ready for Christmas, between appointments next week for our swine flu jabs and Steve's return trip to the orthopaedic centre to prove that his carbon fibre replacement finger joint doesn't need oiling!

For a change, I might post some of our artwork next time....Break up the text a bit as they say....

...So don't worry...We're still here, going strong, feeling mainly positive and looking forward to Christmas!

Wednesday 9 December 2009

Almost human....sometimes!

Well, it was quite a weekend and Steve managed brilliantly, even though he's still in the process of recovering from the chemo side effects.

The main event was a trip to Kent on Sunday for a surprise 60th birthday and retirement party for Martin, a long-standing friend from our student days.  And it really was a surprise - he didn't have the faintest idea of what was in store when he arrived for what was supposed to be a meal out with two friends!  Mind you, he had to sing for his supper (well, play the keyboards actually) with his band who were up on stage ready and waiting for him to put in an appearance.  Great food, great atmosphere - Steve and I even managed a bop or two on the dance floor, safe in the knowledge that we didn't have far to travel at the end of the party, just upstairs to the B&B wing of the party venue.

Monday morning we set out for London where I did some prep for Tuesday's meeting, before going into town to see the Anish Kapoor exhibition at the RA then joining friends Peter and Paula for a wonderful meal that night, which gave us a chance to catch up on news and admire Ellie's cake decoration. That's my birthday cake sorted for next year!

Tuesday's meeting went smoothly.  Steve sat through it in the public gallery (without dropping off to sleep in spite of the exertion of the previous evening), so now he knows what I get up to when I'm working away from base...We were back at home at a reasonable hour, thank goodness, so plenty of time to recover.

Steve said that there were times this weekend when he felt almost human again after such a long time of feeling rotten with the chemo.  However, he has yet to last a whole day without taking an anti-nausea tablet and is still getting the weird tastes in his mouth, occasional tingles in his hands and feet which he didn't really notice until the last dose of chemo, and cramp in his leg (but that might just be old age and lack of exercise over the last five months).

Today we have been sorting ourselves out - me at work, Steve making a start on Christmas cards for our friends abroad, which we posted after dropping into the doctor to drop off another research study questionnaire into mesothelioma victims' employment and family history (which Steve has filled in already, as it happens).  

Took the opportunity at the surgery to get an update on the swine flu vaccination programme as we have heard nothing, in spite of being priority cases as a person whose immune system is compromised and his carer.  It looks like we had fallen through the net, but are now flagged up on the system.  Not a moment too soon.  My temperature has rocketed this evening to 37.9 C, just a whisker under the swine flu trigger of 38 C. However, apart from feeling hot and bothered, I have no other symptoms, so it's probably down to anxiety and wearing a big warm jumper.

We are both feeling a little nervous about tomorrow, when we pay a return visit to the Oncologist to find out the results of Steve's latest CT scan and X-ray. What will it show? Who is winning?  Steve or Leo?  Or is it still a draw?  

Assuming all is well, I shall leave Steve to look after himself for 24 hours or so while I go to Bristol after the hospital visit for a work centenary celebration and meal.  If all is not well, I won't feel much like celebrating so will probably stay at home so we can drown our sorrows together.   A big thank you to those who have already been in touch to wish us good luck for tomorrow.  The rest of you, please keep your fingers crossed for us!  

Watch this space for news....

Saturday 5 December 2009

The great debate

It's two weeks and a day since Steve's last dose of chemo and we had hoped that the side effects of treatment would have worn off by now....But no, they still linger on.  Most mornings and evenings we have the great debate.  Should Steve have an anti-nausea tablet or try to manage without? He's desperate to get back to "normal".  In fact, he is doing rather is doing well.  He's not taking tablets during the day. However, he still needs them at other times, either in the morning or the evening.  

It's all a bit of a merry-go-round.  There are times when Steve is up, feeling fine and prancing about in the kitchen to whatever the i-pod decides to play at random.  At other times he's fed up, wondering why he now appears to be having side effects that he didn't notice before, like numbness in fingers and toes.  The spasms in his leg continue to annoy him from time to time, usually in the evenings after a long day sitting in front of the computer....I wonder why?

I think it will all settle down eventually.  The cumulative impact of chemo side effects that have built up over five months are bound to take more than a couple of weeks to disappear entirely.  Going to hospital so frequently and knowing that he would feel rough after chemo, meant that he was expecting the worst.  Now that doesn't happen, he has no obvious reason not to feel good and more time to be aware of the things that bother him.  It's really not surprising that he is feeling the way he is at the moment. What he needs are some distractions.  Let's see what we can do.....Watch this space!

Tuesday 1 December 2009

How very strange......... no chemo!

It's Tuesday and we haven't had to spend the day in hospital - how very strange!  Now I think we can truly say that chemo is really over..

...What a pity the side effects aren't over as well, even after a rest week.  Following a couple of days respite, we were back to the morning sickness today, even though it was mild and swift. Steve still needs anti-nausea tablets morning and evening, and is getting frustrated by the strange flavours which are still affecting his taste from time to time.  That said, he really does seem noticeably better in himself in terms of energy levels, which are on the up (though still not normal) and mental alertness/taking an interest in things (the lassitude is lessening!)

It's 1st December and we have a busy time ahead, trying to make some more headway with preparations from Christmas.  However, as I have my head down for the rest of this week sorting out papers for a work-related meeting in London next week, I'm not sure how much progress we can expect to make in the meantime. 

Plans to get away for a short break before the festivities start in ernest have had to be put on hold/scaled down because Steve has a hospital appointment at the orthopaedic centre to review his bionic thumb the week after next, as well as next week's assessment meeting with the consultant to review any changes to the cancer following the last two cycles of treatment.  The chemo may have finished but the hospital visits carry on, for the time being at least.

However, I did manage to meet up with friends last Friday over a few drinks to catch up on news from Nottingham (lovely to see you Karen and Mark) as well as bumping into other old friends, quite by chance on separate visits to the Ashmolean (what nice surprises Paul and Veronique, and John and Kate!).  We'll be dropping in on other friends in London next week (looking forward to it, Peter and Paula!) and there's something else happening before then... but my lips are sealed until after the event!

Last but not least, a big thank you to our neighbour Marie, who never ceases to amaze us with her kindness and generosity. 

P. S. thanks for the Christmas joke, Glyn - Carols indeed!