"Patient with complex needs taken off cataract list"

Being taken off list for cataract surgery after having to cancel ops and appointments at Hairmyers due to highly complex health problems including, autoimmune disorders rare, breast cancer treatment and after problems, osteoporosis, becoming registered blind, deaf and to top it on the day the person calling to cancel me didn’t know just got letter re possible cancer,  minimum things found in gynaecology ultrasound. So I was distraught.  

Husband took call as my hearing is too bad now.  I had already spoken using my phone a week before to person at pre assessment info call.  Said I could come on the date in May but not have op until later in June. This was due to a wee 4 day holiday that’s  been cancelled  first 2 years ago due to storm, then last year COVID.

We got a call a few weeks ago to say my special room was booked and ready for beginning of June and ferry too.  We have to take this holiday or my sisters who bought it for my 50th birthday, yes I am that young, would lose the money they had paid.  My husband had shielded me like the warrior he is for 14 months and I just felt I know there’s gynae Probs now, didn’t know then they had found stuff, I have had breast cancer and gone blind in past 6 years so go holiday. Come back get cataract op done.  

My healing time is more due to problems with Behçet’s disease I have.  It compromises skin when cut in ops ect... took 5 months for mastectomy to heal.  Then last September part of the scar opened again and that has been major problem with having phone app ect.  I told you it’s complex.  But person from preassessment said no problem after date in June for first cataract op and have summer to recover.  

Then now I am on heavy duty opoids so hubby keeps all notes of calls ect. And recordings so forget things.  I got a call from the person from cataract waiting list very aggressive to husband.  Now they knew I was in a state after getting a letter re-grading pelvic scan as having major gynae problems after stopping g cancer treatment.  Possible C word can’t use it in that present tense context.

My husband tried to explain we had a holiday planned not 2 weeks on a cruise but a quiet  few days on a close Scottish Island.  Well this person was very aggressive in their tone and said I had cancelled appointments ect.. and a few op dates but we explained every time concerning on going problems that had to be dealt with on the spot.  Plus I was shielding from COVID and was terrified as with my health problems, issues ongoing serious present at the time health concerns. No I was going off the list as I was in the hot zone or something similar.  

Basically I wasn’t make there waiting times look good.  But the solution was get the holiday, get the op recover.  Then deal with gynaecology concerns which will involve another op.  Then recover.  Then get next eye done.  Recover.

The laugh is I was at the most wonderful eye consultant at Gartnavel a few weeks before.  Wonderful calm manner understood my problems.  Told me that due to eyesight deficit being of an auto immune reason, Behcets the cataract wouldn’t make a huge difference.  But what it would do is let light in and hopefully save me going as I call it and I’m terrrified to say it Dark blind.  Not see shapes or shadows or faces that I can see when someone is close enough.  Hairmyers should use that consultants approach more often.  I had just been told you won’t get your sight back but it’s conservation.  

I think I got the letter on Friday saying I was off the list and need to find my own person to refer to somewhere else or words to that effect.  

You ask me how I feel.  Devastated, anxious, angry, vulnerable, no power, and I think that if this is politicians putting pressure on hospitals to cut waiting times at the expense of someone as complex as me being cut off.  Astray in an ocean of worry and concern which makes with anxiety and stress my two auto immune disorders, Behcets, dercums, and osteoarthritis,osteoporosis, Asthma, terrible menstruation, lost sight, hearing, wheelchair user due to spine difficulties, osteoarthritis, cardiac arrhythmia and  severe pain coming from all angles MUCH WORSE.

I honestly can’t believe this has happened to me.  I just want put back on and get the op in June. Please.  So upset in the Eye Department at Hairmyers not the nurses or health care staff.  But bureaucracy.  Sorry spelling atrocious friend doing this for me.  

If they don’t want me because I’m complex where do I go.  What do I do.  I can’t go private of course, my husband my carer.  We live in disabled housing.  Blackwood home, very grateful.   Persons said their would go to their manager.  Last thing they said.  Guess Manager there didn’t care either.

I have just been told that at the start of this I had a colonoscopy and polyps removed that was the problem at the beginning as I was quite ill after this and ended up with infection.  It will be in my notes if Hairmyers wants to check I think it was at Wishaw university hospital. Then the mastectomy scar opened I thought my cancer was back in between Covid and everything else.  The gynaecology investigations at Wishaw have been intense past month.  At post menopausal unit.  And due to my life being turned upside in ten years I have depression.  And am mainly housebound.  But I was a microbiologist and scientist.