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!

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