Weekly roundup

We cruise along in life blissfully ignorant of the fact that on any given day, totally without warning, our world could come crashing down.  That’s what has happened to my sister-in-law this week when she was diagnosed with breast cancer at the age of 49.  Of course, it would be the s-i-l that helps me with my parents, has a full-time job as a home care manager and still has a child living at home, and not my other s-i-l who does absolutely bugger all – it’s the unfairness of it that makes your blood boil.

As you all know, I’ve been trying for over 2 years now to find a reason for my Dad’s severe sensorimotor polyneuropathy.  The neurologist at the RVI in Newcastle, as a last resort in July 2019, ordered a lip biopsy to check for Sjogren’s Syndrome (the gold standard test for SS) and sent the report through to my Dad’s GP.  The GP couldn’t make head nor tail of the histology report, but as the neurologist said in her letter that the result showed “mild inflammation” my Dad was referred to a Rheumatologist for further consultation.  We saw him in October, but he hadn’t been sent the histology report.  He ordered a load of further tests which all came back normal and we waited, and waited, for a follow on appointment.  In the last 3 months I’ve rung his secretary twice to ask what the hold up is and she just kept saying they hadn’t received the lip biopsy report, so I told her to bloody well chase it up.  Then last week my Dad gets a letter from the Rheumatologist to say he still hadn’t had a copy of the biopsy report, but as all the other tests were negative he was discharging my Dad from his Clinic.  WTF?!

The same day, I rang the RVI and it took less than 3 minutes for them to email me the biopsy report, so why the hell the Rheumy’s secretary couldn’t have done that is anyone’s guess.  And the report shows “focal lymphocytic sialadenitis; focus score = 1” in other words it is absolutely positive for Sjogren’s Syndrome, or possibly the blood cancer lymphoma which we already know my Dad has a marker for.  I am LIVID.

Livid that this was done 6 months ago, yet for some reason the neurologist has called the result “mild inflammation” when it’s nothing of the kind.  Livid that my GP didn’t bother to Google the result if she didn’t understand it, and realize it was positive for SS.  And livid that the Rheumatologist would discharge my Dad from Clinic without bothering to get hold of the biopsy report first.  These people get paid tens of thousands of pounds each year of my tax money to do their job – I shouldn’t have to be doing it for them.  Needless to say, I sent a very sarcastic letter to all 3 health care providers and requested an urgent appt to discuss.

My Mum’s been having some stomach issues lately, so on New Year’s Eve I sat for 2½ hours in the hospital waiting for her to have an endoscopy, which in the end had to be halted mid-way through as Mum couldn’t breathe due to her severe COPD.  She went back on Tuesday to have the test repeated, but this time they put her on oxygen and it was much better.  Thankfully nothing sinister was found, though there was a large area of inflammation which was biopsied and we’re now waiting to find out if she has h-pylori, which can cause ulcers and needs a course of antibiotics.

I’m so fed up of hospitals I can’t even tell you.

In amongst all of the above, I’ve been trying to sell my house and buy a knackered bungalow – more on that in my next post!

 

3 thoughts on “Weekly roundup

  1. Jan Groh

    I’m so sorry! Why some people can’t be bothered to just do their jobs, especially when some tasks are so simple, I will never know. Sorry for both the hold up, and the unfortunately result.

    Liked by 1 person

    Reply
  2. init72

    Contact PALS ASAP and get them involved – they will advise you and deal with any complaints far better than us emailing – yes you may get an appointment but PALS will get you taken more seriously and help stop it happening to others too x

    Like

    Reply
    1. Jak Post author

      Thanks for the concern, but I simply don’t have the energy atm to complain 😦 After 2 years of fighting for my Dad, and with the house move, I’m exhausted x

      Like

      Reply

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.