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