Dividing our time

For the last two weeks or so, we have been dividing our time between home in Oxford, family in Bristol and (in my case) a work-related trip to Guernsey, with lots of packing, unpacking and repacking in between, depending on who was going where and for what purpose. There have been times when I have woken up and wondered for a moment where I was......

The GP advised the family that Steve's mum is fading fast, so we have been visiting her in her nursing home in Bristol as much as possible.  Usually, she has been sleeping but yesterday she was awake, recognised us and smiled.  We even had a sort of conversation - not easy when one person is profoundly deaf and talks in a whisper - but worth the effort of writing in big letters on a white board, knowing that it might be the last chance to give her our love and kisses.  

The previous weekend, we enjoyed a lovely meal out with friends Ruth, Anne and Colin...the same friends who persuaded us out of hiding back in December when Steve was feeling very low, and helped us get back on the path of positivity.  

We have also enjoyed our son's company at our home in Oxford and his house in Bristol, which we are helping him do some work on at the weekends when he's not working in London.  Makes a change from working on our own house...

Because we've been away, I celebrated Mothers Day on our return home yesterday where a big bunch of tulips from our daughter was waiting for us - thank you Katie!

Steve is still doing well, no pain and maintaining his weight. Doesn't need to wear a belt to stop his jeans falling down now!  The neighbours all admire his new look with short hair and a goatee beard...one even walked past without recognising him.  He looks like a new man :) 

The garden is doing well; daffodils are taking over from the crocuses and winter flowering pansies in the pots, and the clematis Armandii which climbs over the back of the house is in full flower, along with the rosemary in the little herb patch. Steve was given a large, beautiful glass cloche for his birthday by our dear friends Sally and Jon.  It's warming up a circle of soil ready so sow some rocket which we look forward to eating fresh in our salads in the not-too-distant future.  

Plans for the next 3-4 weeks are coming together nicely. However, we are reluctant to look much farther ahead than mid-April when Steve has his next clinic appointment with Hannah, the mesothelioma/lung specialist nurse. Nevertheless, we are keeping tabs on suitable clinical trials which are recruiting, so we can hit the ground running if and/or when Steve decides he wants to have another go.  In the meantime, we are just enjoying life taking each day as it comes, with no horrible side effects to manage and improving energy levels.  

Carpe diem, as they say!

Social occasions and celebrations

It's been a busy time since the last post, full of social occasions and celebrations.  

I welcomed in the Year of the Goat/Sheep by dancing with lions in London's Chinatown.  Well, stood in a crush with my camera held high above my head hoping to capture something....but it was fun, anyway!

The following day, our friends Wayne and Terry came to us for tea in the afternoon and it was lovely to catch up on their news.  We go back a long way (pre-children) when Wayne was in the American airforce based in the UK and rented a flat with fellow service man Curtis above the little shop where Steve designed, produced and sold hand painted window blinds.  Both married English girls.  Although Curtis went back to the States, Wayne and his wife Terry stayed on and we have kept in touch on and off over the years, helped by contact on Facebook in more recent times.

Another social meet up the day after, this time in London with Margaret visiting the UK from Canada, via family in Belgium. We met initially online via the blog, having a common bond through our husbands, both diagnosed with mesothelioma. Then we met in the flesh last year in Oxford, when Margaret's husband Octave was still alive.  The meeting this year was bitter-sweet as Octave died late in 2014. But it was good to talk and listen to someone who understands being a wife/carer through personal experience.  And we had a jolly good tea at the Wolsey in Piccadilly, and lots of hugs and smiles as well as some tears.  Looking forward to seeing you again soon, Marg!  

Our son arrived early for Steve's pre-birthday gathering last weekend, followed by our daughter late on Friday afternoon for a family meal at home with just the four of us.  We were joined by our daughter's partner on Saturday, and all went out for a celebratory meal that evening - enjoying a taste of Spain in Al Andaluz, Oxford's Andalusian tapas bar.  Those with the energy went out for a run or walk on Sunday morning, then we had lunch together before saying our goodbyes.  

For Steve's birthday, we treated ourselves to a couple of days away in Cambridge, staying in a central hotel well located to go walkabout the historic core and along the River Cam, enjoying views of "the backs" of some of the University colleges and crossing back into town via the "Bridge of Sighs". Before going out for birthday meal No 2, we also enjoyed the Kings Voice choir singing by candlelight in the magnificent setting of Kings College Chapel, emerging into the twilight as the sunset faded in the west and the moon and Venus shone brightly above.  

More sightseeing yesterday morning, including a visit to the Fitzwilliam Museum before making the return trip home, tired but happy.

He was so poorly back last November/December, we wondered whether Steve would still be around for the New Year....let alone his birthday in March...so it was a double celebration, still here and still enjoying life!

We also celebrated the remarkable news from fellow blogger Mavis that her immunotherapy trial drug continues to work its miracles; all of her tumours have shrunk and some have disappeared completely!  

Steve is excluded from immunotherapy drug trials because of his medical history of autoimmune disease and the risk that activating his body's own immune system would cause a serious flare up of his arthritis.  As a result, we have been waiting and hoping that the "Saatchi" Medical Innovation Bill would become law in this session of parliament, as it will probably give him options should he wish to try a novel as yet unlicensed treatment, there being no cure for mesothelioma.  

However, after a successful passage through the House of Lords, the Lib-Dems have scuppered that hope, and with it the hope of many terminally ill people who simply do not have the time to wait for the next opportunity for the Bill to be considered by the Commons.  In our 10 days of social occasions and celebrations that is the one fly in the ointment....

But we will not dwell on that bad news...there are more social occasions in the pipeline to look forward to, and lots to do in the coming weeks.  But nothing perhaps as good as listening to Steve talk to the hospice nurse on the phone the other day, telling her that he feels fine; no pain; good appetite; putting on weight and energy levels improving....And long may that continue! 

Spring into action

Although there's one more week until the end of February, spring is very much in the air and we have continued to be busy in the house.  

Steve's old workroom has been completely transformed into another guest bedroom with organised storage for our collection of art and music media as well as space for visitor's cases, clothes, toiletries, bits and bobs.  Although small, the room is bright and sunny and overlooks the garden so its a very pleasant place to be now it's decorated, carpeted and decluttered.  

The garden is greening up nicely.  At long last, the tree next door has been cut back; sunlight and daylight are flooding into our plot and lots of plants and bulbs are springing into life, guarded by a matrix of little wooden kebab skewers stuck in the ground now the smell of lion poo pellets no longer deters the neighbourhood's cats...Time to sow some seeds soon to enjoy summer flowers!

Steve has been springing into action too - his hair is growing well; his weight is still increasing; his energy levels are improving.  He still needs an occasional nap during the day, however, he seems like a different man compared to the way he looked and felt in November and early December, which is the lowest I have ever known him to be.  We thought he would get even worse after hearing the doctor's prognosis back then.  In fact, the opposite has happened - thank goodness - and long may it continue!

It's not been all work.  I've had some time to spend on photography and had a run of images published recently, which was very pleasing.  After putting a lot of energy into the house, we've rewarded ourselves with a couple of trips out, including a Valentines Day trip to London, where we met up with our dear friend Sarah and enjoyed two exhibitions at the National Portrait Gallery with lunch in between and tea together before starting out on the journey home.  

We've also travelled to Bristol to visit Steve's mum in her nursing home.  She didn't wake up this time, but we talked to the community care worker (who was there to do an assessment) and the on-site nurse.  We also made what now feels like the obligatory trip to Ikea, so it wasn't a wasted journey.   

We are still hesitant to make plans very far into the future, but are looking forward to Steve's birthday in little over a week's time and a family pre-birthday celebration at the end of the month.  More of that in a future post :-) 

and life goes on

The last time I posted a blog, Lucy the plasterer was putting a skim coat on the century old walls of our hall, stairs and landing.  Today, there is more banging and crashing in the house, as old carpets are ripped up to be replaced by new ones.  In between these two events, we have been busy cleaning, prepping and painting walls, ceilings and woodwork.  

In other words, life goes on...notwithstanding the doom and gloom of the doctor's prognosis in early December that without further treatment, Steve's life expectancy is now "a small number of months."

In fact, as the side effects of the last drug trial and December's radiotherapy course wear off, Steve has been feeling much better in himself.  His appetite is good and he continues to gain weight, slowly but surely.  Although he still takes an afternoon nap most days, there are days when he goes through without a sleep. When he is awake, his energy levels have improved so he has been able to get actively involved in the current round of renovation work. 

The goatee beard is doing well. The eyebrows now have a life of their own!  Although still thin, the hair on his head is also growing back.  The chest lump is still reduced in size and there has been no more pain.  

In truth, Steve does not look, feel or act like someone close to the end of life, thank goodness.  However, we know from the experience of other meso warriors not to count the proverbial chickens; anything could happen at any time - so we continue to take life one day at a time and make the most of it.  

Our daughter and partner are visiting this weekend, and maybe our son too.  Being sociable will make a great break from painting and decorating!  

Notwithstanding the freezing weather, there are buds on the clematis and the crocuses are popping up through the pots of winter flowering pansies, a promise that spring is on its way. The allium bulbs planted in October are showing green shoots, at least where they have not been dug up or covered over by the neighbourhood cats, who have adopted the areas of bare earth in our garden as a feline super loo.  Having failed miserably to deter them with citronella powder and a physical barrier, we are now seeing if they will be put off by the smell of lion poo pellets....fortunately, the odour is not noticeable by people!  

Back in December, I wasn't sure that Steve would still be around to enjoy the new garden in springtime.  Now, we both feel more positive.  

An appointment at Dr T's lung clinic has come through for a date in April, when Steve will be seeing one of the specialist lung cancer/mesothelioma nurses rather than a doctor.  To me, it still feels a little like the oncologists have given up on him, which I suppose isn't surprising if they are basing their assessment on how he looked and felt ten weeks ago. However, Steve is pleased to be seeing someone who specialises in mesothelioma, and we are both delighted that he is now back "in the system" rather than being cut adrift completely.  

If Steve feels and looks like he does now come April's appointment, then I think nurse Hannah will be in for a pleasant surprise.  Far from being at death's door as expected, he's still very much alive and kicking!  

As always, we have been following the fortune of other meso warriors who blog.  Claire writes that her husband Paul's mesothelioma is dormant, which is great!  Mavis is still going strong on her immunotherapy clinical trial at the Royal Marsden, although understandably upset that the other mesothelioma patient on the trial has had to stop, as his cancer is growing in a new place.  Lou in Australia is close to the end of 10 sessions of radiotherapy - a tough time with side effects, but she is such a fighter!  Ray's condition on the tremelimumab trial is stable; he can now progress on to three monthly doses of the drug and both he and Amanda can look forward to spring!

Big hugs to all the other meso warriors out there, their loved ones, families and friends and to those to fight to raise awareness of the continuing dangers of asbestos.  Here's hoping the Saatchi Bill will get through the Commons stage, after being supported in the House of Lords.  

Gathering momentum

There was a very bleak period back in November and early December when life appeared to be slowing to a halt as a result of disease progression, pain, appetite loss, weight loss, and hair loss ....all overshadowed (and no doubt influenced by) the doctor's prediction that without further treatment Steve's life expectancy was probably a small number of months.

Well....those words were haunting us about seven weeks ago. Since then, rather than going downhill as feared, life has improved and seems to be gathering momentum!  

The five day course of radiotherapy in December has done its job.  The lump on Steve's chest is still shrinking, and there have been no further pain episodes.  Steve's appetite is good; he is eating well and has put on weight.  His hair is growing, his eyebrows have returned fully and he is cultivating a goatee beard!

We have been sociable over the last 10 days or so - a visit from Steve's brother and his wife; our son staying for the weekend; a splendid Sunday lunch and afternoon with our dear friends Jonathan and Sally.  

We have also been out and about a little, including a day trip to Bristol spent mainly on a mission in Ikea.  However, this is not the best weather for galavanting if you have a compromised lung, so we have directed our attention indoors, been very busy and made good progress on house projects...

The big clear out and declutter continues and we've now freed up another room, which will soon be ready to redecorate and furnish out for family and friends to stay over (hence the trip to Ikea!) 

Steve has done some odd jobs in the kitchen and I have been stripping wall paper in the hall, up the stairs and on the landing.  As I type, Lucy the plasterer is putting a fresh coat of skim on the old plaster which is now about 110 years old and in dire need of some TLC.  Then its out with the paint rollers and time to browse through carpet samples.   

If you had told me in November that we would be doing stuff like this in January, I wouldn't have dared to believe you given the doctor's prognosis.... I wonder whether the doctor would still say the same, if he saw Steve now?  

For sure, the GP is less worried. With Steve's agreement, she is now only contacting us once a month to check up on him, rather than phoning weekly as she has been doing up to now. Steve was also able to reassure the hospice nurse that he doesn't need any support at present, but appreciated the contact all the same.

He still gets tired, but if the chest lump is still shrinking then the chances are that the radiotherapy is still working, so I would expect the side effects, including fatigue, to continue as Dr Rebecca indicated.  

So here we are - life goes on and we are keeping busy, ticking off things on the home front "to do" list and appreciating the difference each job makes.  Strange how making progress on things we had put off doing for so long can make you feel positive, especially when it was all doom and gloom a couple of months ago. Goodness knows how long this will last, but we are certainly making the most of it!

Steve still can't get enthusiastic about taking part in another clinical trial at present, even though more are now recruiting (or will be soon).  After the debilitating side effects of the two unsuccessful trials last year, he just can't stomach the thought of going through it all again. Only time will tell if that feeling will change....We shall see.

For now it's back to paint charts, carpet samples, furniture browsing and putting more social dates on the calendar.  It may be "Blue Monday" but we are happy!

Take care in the cold, wind and snow, all those in the northern hemisphere!

New Year greetings : two for one

To celebrate the first blog of 2015, here are two posts for the price of one - the first a message from Steve, the second an update from me.

Steve's message

Happy New Year!

Looks like it's my turn to write something again, so I will start by thanking you all for your good wishes, it is very humbling to see how many of you care about me.

After a really low point approaching the end of the drug trial about six weeks ago, I am now feeling much more positive: my appetite is back, I've gained about three kilos since then, my hair has started to re-grow and I'm particularly pleased to have eyebrows again, they were a big psychological loss.  My energy levels are still lower than I would like, but higher than they were, and I still feel tired from time to time, but, all in all, I'm feeling much more like myself.

Planning ahead still remains difficult, as it has been for the last five and a half years, but we still look to the future taking it one day at a time. And I'm pleased to find I'm still here!


And an update from me

Today was the first hospital appointment of 2015 in the medical oncology clinic - a follow-up to Steve's radiotherapy treatment in December.  

Dr Rebecca examined Steve and confirmed our thoughts that the large lump on his chest has shrunk, as had the smaller one near his liver (which we had all but forgotten about). She was pleased that Steve had no noticeable side effects from treatment other than tiredness.  It seems that this has peaked, but is likely to take some months before Steve fully recovers from radiotherapy fatigue. 

The good news is that radiotherapy treatment on the scale Steve received in December 2014 is likely to be effective for at least a year.  Should the external tumours begin to grow again, he can still have one more round of treatment to knock them back.  

For this reason, she didn't think there was any need to make another appointment to attend the clinic unless Steve is worried about something.  His file is marked "SoS" to ensure he would get an urgent appointment with the medical oncology team should the need arise.  He has a similar "SoS" tag with the clinical oncology team, should he feel fit enough and decide he wants to take part in another clinical trial.

She also asked about our meeting with the Palliative Care Nurse in the hospice, and was pleased to hear that this had also been productive in terms of medication being prescribed to help Steve's gut processed food more quickly, along with the return of his appetite and weight gain (now 57 kilos, two kilos more that his last recorded hospital weight).  

However, she also used the phrase that treatment now was about maintaining a good "quality of life" and there was no mention of resuming the three monthly assessments which Steve has had regularly since diagnosis in June 2009. 

We had gone into the meeting determined not to leave until we knew where we were going on from here; neither of us felt comfortable with the idea of being cut adrift from regular check ups.  At this stage, we would prefer to face "scanxiety" in order to know and prepare ourselves for what's happening inside his body, rather than not know and be caught on the back foot as the disease progresses.  

Besides which, we will try keep up-to date-with current research on mesothelioma and early phase clinical trials via Google alerts and the meso community on Facebook.....If we stay in the three monthly assessment system, it gives us a chance to follow up and ask questions about promising research such as that carried out at the Royal Marsden, or perhaps request a referral to a specialist mesothelioma centre like the ones in London and Leicester.

For the time being however, Steve would rather carry on as he is - recuperating from the side effects of the last drug trial and the radiotherapy fatigue with rest, and slowly but steadily regaining weight through diet.  

Perhaps we are putting our heads in the sand, thinking that a "small number of months" prognosis in December will stretch far enough into the future to justify making a follow up appointment for three months time, but we asked for one anyway and Dr Rebecca was happy to make the request.  

So that's where we are now, and that's the plan for the next few months: rest, recuperation, relaxation, and regaining weight.  Quite how we are going to achieve all that along with all the other (more exciting/more productive) things we would like to do to enjoy a good quality of life remains to be seen!  

Big hugs as always to all the meso warriors around the world, especially to long term survivor Lou in Australia who is now on weekly visits to her oncologist after chemo failed to stop tumour and fluid activity (how different the approach is in Oz - when things go wrong there, they step up the frequency of visits...in the UK, you have to ask for appointments....) and to our own amazing Mavis, who is worried that the immunotherapy trial drug which is working so well on her meso tumour may be damaging her one remaining kidney.

Good luck to all those who are walking 100 steps to raise money for Mesothelioma Research as part of the Meso 100 campaign, where you are invited to donate 100 pennies for 100 steps.  Please click the link to find out more!

Last but not least, many thanks to all those who lit candles for Meso Warriors past and present.  It helps remind the Mesothelioma Community that we are not alone xx

a family Christmas

This year, Christmas has been very much a family affair.  

Our son and daughter arrived the day before Christmas Eve. We were joined after Christmas by our daughter's partner, followed soon after by our nephew, his partner and their daughter who came for lunch on Monday and stayed until early evening.  So...the house has been full of life, laughter and activity much of the time, with just a few pauses for naps - for all of us, not just Steve...

We have enjoyed good company, good food and wine, some fantastic presents, family games, a Boxing Day walk terminating at a riverside pub for mulled wine, and lots of laughter, hugs and kisses.  

We even managed a family day trip to Bristol to visit Steve's mum in her nursing home.  Although she was asleep, Steve's kiss woke her up.  She smiled and seemed to recognise everyone, which was the best Christmas present she could have given us. 

We're looking forward to a meal with our dear friends Jonathan and Sally tomorrow, and a get together here with Steve's brother and his wife on Friday. Just what we need to set us up for the New Year. 

We were very touched by a blog post about Steve written by our friend Linda Reinstein of the Asbestos Disease Awareness Association (ADAO) which you can read here.  I particularly like the quote which finishes the blog post.

We stopped taking life for granted when Steve was first diagnosed with mesothelioma. Since then, our time horizon has rarely looked beyond the date of his next assessment. Now, even more, we take each day as it comes - we can usually find something to celebrate.  

Over the last week, Steve's appetite has improved; he has not only maintained his weight but has also gained several pounds; the growth of hair on his head and face is noticeable, he has now passed the peak period for fatigue associated with radiotherapy so we hope his energy levels will improve a little in the coming days.  

Whatever 2015 has in store for us, I hope there will always be a little voice at the end of each day which says I'll try again tomorrow....

Last but not least, we wish you and your loved ones good health, happiness, fulfilment, courage and comfort in the coming twelve months - with love from us xxx