Sunday 31 January 2016

Support swings into action

Over the last 10 days or so, Steve's support system has swung into action.  Every day during the working week, someone has visited, phoned, or made a delivery intended in one way or another to mitigate the impact of mesothelioma on our lives.

First up was Nikki, an occupational therapist (OT) from the Community Therapy Service who discussed with us practical aids to make life a bit easier.  We settled on a "bathboard" for Steve to sit on when he has a shower so that he doesn't waste energy standing up.  Other aids and equipment were discussed but are being held in abeyance at the moment as Steve doesn't feel that he needs them....but at least we are now aware of what's available.

Next up was Sarah, the specialiast palliative care nurse from our local hospice (in other areas, these are known as Macmillan nurses, but ours are funded by Sobel House Hospice).  A long talk including some laughs, and some helpful suggestions about medication to ease Steve's cough and help him sleep at night.  We expressed an interest in taking part in a Carer Study to see whether training sessions for carers are beneficial. Steve also showed an interest in music therapy (art therapy he can do himself!)

The GP phoned later that day to discuss the meds - Oromorph and Lorazepan - and a further supply of Complan as Steve's weight is still falling.

The bathboard was delivered and fitted the next day, and the medication and nutritional supplements picked up from the local chemist.  We also had a phone call from Carol, the Hospital OT who visited us the following day to discuss techniques to help breathlessness.  Steve is already putting some of these techniques to good use....

Last Thursday was scan results day - more of that in my next post.  Carole met us in the clinic before we saw the consultant to give us a Macmillan leaflet and CD about managing breathlessness.

On Friday morning, we were swept off our feet by a whirlwind masquerading as a phebotomist who arrived unannounced to take Steve's bloods to test for infections and anything else that might need treatment.  She endeared herself to Steve by telling him he was "too young" - most of her patients are elderly.  But he was less enamoured later in the day when his arm swelled up where the samples had been taken.  One of the problems with having small veins...

Later that day, we were contacted by Radiotherapy to set up the planning appointment for Steve's next course of radiotherapy on his chest/shoulder lump.  That will take place tomorrow, Monday. The music therapist also contacted Steve and arranged to visit us next Tuesday to talk about how he can help.  Last but not least, Nikki the Community OT returned to make sure Steve feels comfortable using the bathboard (he does) .

The morning post brought a copy of a letter from Sarah (the palliative care nurse) to our GP updating the doctor about her discussion with us.  One of the things in her letter came as a bit of a surprise to us.  More of that shortly....

But, as you can see, lots of things are happening times it feels a bit overwhelming, so many people wanting to help. But we are very grateful that such help is there.  Three cheers for the NHS and the hospice movement!

Saturday 30 January 2016

For Nancy, with love

So much has happened since my last post, I'm not sure where to begin...but that can wait.  Today's blog is dedicated to Nancy, our American friend whose mesothelioma journey ended yesterday morning.

We were introduced to Nancy back in 2014 via a mutual cyber friend, fellow meso warrior and blogger, Lou in Australia. When Nancy and her partner Andrew visited the UK later that year, we sent a memorable afternoon with them over a Champagne tea on the roof terrace of the Ashmolean Museum here in Oxford, chatting away like old friends even though it was the first time we had met face to face. The mesothelioma bonds that bind us together are strong and stretch across oceans.....

We had hoped to meet up again with Nancy and Andrew last Autumn, but sadly the return visit had to be cancelled due to deterioration in Nancy's health.  Nevertheless news of her death yesterday still came as a sad surprise.  Our thoughts are with Andrew, Nancy's family and close friends.  We send you all our love.

I'm so glad we still have our happy memories of that afternoon in Oxford, Nancy.  This is for you, with love xx

Thursday 21 January 2016

Time for teamwork

We're now three weeks into the New Year.  The cough persists - no surprises there - but sometimes Steve's chest sounds very wheezy, which is a worrying new development.  

The course of steroids over the Christmas period tapered to zero last week. Since then Steve's appetite has been variable and the swallowing problems persist.  It's quite bizarre.  One minute he is sitting there happily enjoying his food.  The next, he suddenly announces he can't eat any more, can't even swallow the food in his mouth which he has been chewing and chewing, he gags and out it comes.  

Not surprisingly, his weight continues to fall.  On Monday, the scales dipped to under 50 kilos for the first time.  He now weighs 49.7 k or 7st 11lbs.  I know it's just a number, but seeing the
 readout on the scale start with a number in the 40s rather than 50s (or 7 rather than 8 stones) has been the trigger to call in reinforcements....So a cry for help has gone out, Team Wride has been expanded and help is at hand.

The GP has prescribed a nutrition supplement (supposed to be Build Up, but opened the packet to find good old Complan). Steve is having a cup with breakfast and another before bed in addition to his normal meals.  He was expecting it to taste awful, but actually finds it quite palatable.  It's also reassured him that he's getting all the vitamins and minerals he needs, in addition to calories from fat, fibre, protein and sugar. 

Tomorrow (Friday), the Occupational Therapist (OT) is coming to do a home assessment and advise whether there are any aids 
or adaptations/alterations to the house that might help Steve on a day-to-day basis.  Horrible to have to acknowledge this, but there's a balance to be struck between making small changes which will make life easier now, and making alterations of a more permanent or long term nature which may help, but may no longer be required in the foreseeable future. 

On Monday, the Palliative Care nurse is coming from Sobell House Hospice to discuss their outreach services and how they can help someone in Steve's position (and me, as his carer).  

Next Tuesday, it's the turn of the District Nurses to come to the house to check Steve's pressure sores (which have all but healed up) and advise when it's OK to stop using protective plasters and just rely on the barrier cream.

After a day off on Wednesday, we're back on the meso merry-go-round next Thursday, with an appointment in hospital to get the results of last week's scan and to plan Steve's next course of radiotherapy on the external chest lump. The scan will probably also show up the cause of his swallowing problems.  

Then, I think, we will have to have one of those difficult conversations....He wants to know "where he is" and what to expect next.  We know the doctor can't forecast life expectancy with accuracy (think back to the appalling statistics given on diagnosis in 2009, and the "small number of months" prognosis received in December 2014). However, we would rather be aware and prepared for the worst, than be ignorant and caught on the back foot if there is a very sudden deterioration in his condition. 
So once again, life is revolving around mesothelioma. However, it goes on..... 

An engineer has been in to service the temperamental boiler, so we have been warm during this cold snap. Builders have fixed a leaky loft roof (so no excuse now on that front to put off much needed redecoration at the top of the house).  

There have been two dental sessions and one hospital appointment for me (time for a bit of self-maintenance as well as house maintenance) as well as a day trip to London to catch some exhibitions and enjoy the London Lumiere event with daughter Katie, while son Jack was on "dad-sitting" duty in Oxford and accompanying Steve on his scan appointment. 

On the social front, Jack and Katie have been staying over or visiting more frequently in the last few weeks, and we have enjoyed the company of friends living locally (Murray, Jean and Ruth) for afternoon tea or morning coffee. Sadly however, we had to postpone a visit from our nephew, his daughter and mum last Sunday, as Steve just didn't feel up to it.  I think socialising will be on hold for a while given all the other things that are happening at the moment...there is only so much excitement we can take on one day... 

House-hunting in Oxford is in full swing for daughter Katie, now the flat in London has gone on the market. We have been scouring websites for suitable property for her to buy and providing a ferrying around service for viewings at the weekends.  

At least Steve can still drive and travel around online, even if he can't get very far under his own steam.  Even though we drive the short distance from home and he uses a trolley for support, there have been times when Steve has been unable to get all the way around the supermarket on foot. He has had to sit down and rest while I finish the food shop. But he's stubborn; would rather walk some of the way around the shop than be pushed in a wheelchair. I mustn't complain - it's probably that stubborn streak that has helped him deal with health and other big issues in recent years!

Last but not least, another big thank you to the new sponsors on Jack's Just Giving page, Elizabeth and Roger, Mike F, Joanne, Sarah (we now know as one of the anonymous donors) and another anonymous donor!  He has already raised £469.17 for Mesothelioma UK - a cause close to our hearts - with six months to go before he does his big bike ride in the Alps.  

With love as always to all the Meso Warriors out there x

Sunday 17 January 2016

A big thank you and a cyber hug

The big "thank you" is to all those who have sponsored our son Jack to cycle L'Etape du Tour (a mountain stage of the Tour de France) in July, raising money for the charity Mesothelioma UK. Due to your generosity, he has already surged past the original fundraising target!  

We have been particularly touched by the messages which accompanied the donations, including messages from friends, those who have mesothelioma themselves or whose loved ones have the disease, those who have lost loved ones to meso and those who have found us through the blog.  

So thank you so much for your support Jon and Sally, Anne and Colin, Helen, Mary (O'R), Dave, Chris, Heather, Tom, Tessa, Mike, Lorraine, Mavis, Mary (T), Frances, Karen, Amanda and Ray, Angela and Joanne - not forgetting the person who made the anonymous donation.  You all deserve public recognition!

Jack will post updates from time to time, so we can keep you in the picture as training gets more intensive/interesting (to use his words....).  He is also on Mesothelioma UK's cycling fundraising page, along with others turning wheels to raise money for this good cause.

The cyber hug is for fellow meso blogger Mavis, who has been in hospital for a few days recovering from an infection associated with her PICC line, which is used every two weeks to administer the immunotherapy wonder drug Keytruda.  

If you or your loved one has a PICC line, be sure that the dressing which keeps it in place is replaced weekly, along with the cap at the end of the line to reduce the risk of infection. It should also be flushed regularly to keep it clear and clean. Click here to follow this link to the Macmillan website for more information.  

Mavis is doing well and is due home tomorrow (Monday). Everyone who knows her will heave a huge sigh of relief!   

I'll update you with our news in the next few days x

Thursday 7 January 2016

and into 2016 we go......

If you had told me this time last year that Steve would still be here to see in the start of 2016, I would have found it hard to believe given the doctor's prediction that his life expectancy was a small number of months.  But thirteen months on and he's still alive and kicking (although the latter is more metaphorical than actual, given the impact of physical exertion on him....)  

So here is our benchmark post for the start of 2016 - something we can use to monitor Steve's progress over the course of the new year.  I know this will make difficult reading for many of you, but take comfort from the fact that he's still here and not in pain, and enjoying life albeit in a more restrained way than earlier in his diagnosis when he was looping the loop in a Chipmunk plane and travelling to Marrakesh and other exciting destinations at home and abroad.

Appetite, weight and swallowing

The second course of steroids in the run up to Christmas did its job.  Steve's appetite improved and he enjoyed most of his food, although he continues to have problems swallowing some hard food, even small bits well chewed.  But he's now in the steroid "tapering off" period, so we'll need to keep an eye on his food intake and weight.  He continued to loose weight slowly during December - down from 50.5 kilos at the start of the month to 50 kilos on 27 December, but had put on a whole kilo by 3 January, no doubt helped by good festive food, drink and chocolate.  I dread to think how much weight I have gained over that period....

Energy, activity, coughing and pressure sores

Steve continues to find physical exertion difficult.  The simple act of getting up, dressed and downstairs leaves him in need of a rest.  Moving around makes him cough which tires him even more, which is why he spends a lot of time doing things whilst sitting down, causing pressure sores as he has so little flesh to cushion the boney bits.  However, the sores are healing with regular bathing, lashings of derma cream, pressure relief plasters and an inflatable back cushion.  The district nurse is happy and her notes say "wife managing well" so I'm happy. He still declines to use a wheelchair, but it will be there when he does need it. 

Lumps and bumps

The lump on Steve's chest where the cancer has grown through the chest wall has now grown up as far as his shoulder and reached his right armpit.  He lost sensation in his right hand yesterday for a short while, which was a bit alarming.  Whether that was simply because he was sitting awkwardly or whether it was related to the lump pressing on a nerve, we don't know. 

He now talks about "bumping along the bottom" and there are an increasing number of down times when we both shed a tear because the future looks bleak.  And then something lovely happens (often a random act of kindness) and we pick ourselves up, dust ourselves down and start over...

Hospitals and treatment

Today was the first hospital visit of 2016. After discussing how he felt, Dr P examined Steve and agreed that the time had come to have another go at zapping the chest lump again (the last round of radiotherapy on this area was just over a year ago).  She is concerned that if the lump gets much bigger, it could affect nerves and cause pain (not something Steve has to deal with at the moment).  

Last time round, the radiotherapy dealt the lump a glancing blow across the surface.  This time however, the beam would be pointing through the body and is like to have more noticeable side effects including affecting his gullet.  At this point in the conversation, Steve mentioned the problems he has swallowing hard food at times.  As a result, Doctor P wants Steve to have another scan to see what's causing this problem, as it might be enlarged central lymph glands pressing on his food pipe. She can still zap the chest lump with radiotherapy but needs to see the scan results before planning treatment, I assume to minimise the risk of exacerbating the swallowing problem.  

We have an appointment to see her again in three weeks time.  Hopefully Steve will have had a scan in the intervening period, the results will be available and we can take it from there.

Hopes and fears

In truth, we are feeling a bit scared now...not very confident about what the future holds, what will happen when and how we will deal with it.  Many people reading this will know exactly what we're going through.  For others, it may be the first time you are experiencing second-hand the outcome of breathing in asbestos fibres many decades ago and how the resulting mesothelioma affects not just the life of the victim, but their family and friends too.  I hope you will still be there to hold our hands in this journey xx

And doing something positive!

On the bright side, great advances are being made in cancer research, including very encouraging results from an immunotherapy drug called Keytruda which is having an amazing effect on fellow bloggers Mavis in the UK and Lou in Australia.  It may not help Steve, but no doubt it will help others in the future.  

On the physical action front, our son Jack is cycling a mountain stage of the Tour  de France (L'Etape) in July to raise money for Mesothelioma UK, a charity which supports all those with this disease and their families.  

Jack cycling the Dragon ride June 2015

Mountains, mountains and more mountains in L'Etape du Tour 

If you can sponsor him - even a little - that would be great!  Here is a link to his Just Giving Page.  

Lastly, many, many thanks to those of you who have already sponsored him.  You are wonderful people!