Hi All,
Thought I'd better update
Things have been an absolute nightmare since I last posted. My daughter has been pissed around mightily by the Hospital & the Doctors involved.
Theres too much too go into in detail suffice to say they left her original Melanoma excision stitches in too long hence developed an infection. As a result they didnt do wide excision of Melanoma as scheduled (but didnt check the wound until she was under anesthetic DESPITE being told was sore & red), she had one op on 7th April but only had a Lymph biopsy done, went back on 9th had two more moles excised (should have been done on 7th), went back again 14th April confirmed infection definitely gone so she is scheduled for wide excision on 21st April.
I have spent so much time on phone & accompanying her to Hospital appointments and had to insist on answers, explanations, timely communication & proper treatment for her. Until I did she was told nothing & didnt know what was happening or when. They have caused so much anxiety by their actions. They have also cost her dearly with time off work which will be unpaid too hopefully they havent cost her her job as well. The infection was probably caused by them leaving the stitches in too they had actually sunken into her flesh & skin had grown over. She asked them to remove them at initial appointment & they said "not necesaary". The Lymph Node Scanning was a nightmare. A total of 6 large needles inserted into wound (which was red & sore at the time) & "wiggled about" all without any anesthetic too.
Until I accompanied her & complained nothing was being done right. Lucky she had this war horse to ride into battle for her! I eventually got an apology (for what its worth) to her out of them for all the stuffups! They are now very careful to inform us every step of the way. I am now the "contact" too and just today there has been some good news..... Doc confirmed pathology for the two other Moles is negative for Melanoma. The "preliminary" results for Lymph Node Biopsy is also negative for Melanoma so she will not need any further Lymph Nodes removed thankfully.
So at this point she is scheduled to have wide excision & possibly a skin graft if needed (they will decide on the day) next Tuesday 21st. However she does have another appointment on Friday 17th April to have one final check of Melanoma excision to confirm all is OK for the 21st surgery.
She has got some Lymph fluid collecting causing swelling, at site where Nodes were removed too which they will drain when surgery is done. Hoping this will not be a recurring problem. She will be booked into normal ward this time rather than day surgery because if a skin graft is needed normally 2-3 night stay is required. If no skin graft possibly released same or next day. She will likely stay with me again until around Saterday before going home. Hopefully then returning to work following Tuesday.
There have been additional demands all during this time (as if the above wasn't more than enough). I had several appointments to keep for myself which couldnt be cancelled & often on same day as spent morning in the Hospital. I managed to keep them all although a little late for some. This included my skin check by Dermatoligist (I had Melanoma in 1982)....all good just a couple of Skin Keritosis which she treated with liquid Nitro. Confirmed she wants 9 monthly checkups now in view of family history. Then I had the Twins "body checked" for first time too at Skin Cancer Clinic...again all good just annual followup suggested. I also had my Liver Ultrasound done....results OK ....the original Adenoma looks unchanged, the "second" one no longer visible & the Kidney Cyst unchanged. Check again in 6 months. I have still to get to path lab for Liver Function test...hopefully will tomorrow. DH had his Bone Density scan done & I picked up results. Pretty similar to mine spine good & left hip very slightly in Osteopenia range. My Mums birthday was this past Easter weekend so had to shop for present & make 2 hour round trip to see her (sounds awful but I was so tired so was a real chore).
Re the Twins had continuing dramas in last week of school. One was skipping classes & lying about handing in work etc. Eventually managed to get him to complete work & hand it in. Teacher likely to severely penalise him though despite my explanations of health reasons behind it all. Had final assessment last day of school so have no idea how they have done yet. So they had lots & lots of late nights (actually working through to 2-3 am) & many Migraines & meds all this final week up. SIn fact needed Migraine meds after last day of school & following day also. I have two teachers to contact & sort out what can be done...or rather what they are prepared to do... at beginning of next term. Will try yet again to get extra exam/test time allowed as per Curriculum Council guidelines...which the school has previously refused (went as high as the Principal). Interestingly have just found out they DO give accommodations to some other ADD students so will be asking pointed questions why my kids arent given the same!!!!
One bright spot was they both went to & really enjoyed the Year 12 School Ball. But why do they have to have IN the school term??? They really should have been finishing work due the following Monday. Other schools have their ball in the school hols!!!!! This is the only social event for them in the whole 5 years at this high school so I wasnt about to deny them!!! Cost plenty of course ~$650 which we can ill afford. Glad they are not girls apparently $1000 each is nothing for them.
As far as meds go DH is now on 10mg Pred & Twins on 7.5mg (with Docs blessing). DH has upped DHEA to 75mg daily. All started Natural Thyroid Extract 1 grain am last Saterday & will be increasing 1/2 grain each fortnight. No obvious changes as yet certainly no dumping symptoms. Doc wrote out scripts for Thyroid Extract, Pred & Hysone for each. I need to schedule review appointments for Twins, DH sees her 13th May & I see her in June.
I have also been dealing with a dispute with my health insurers been going on 2 months now. Medibank (health insurers) this year have stopped paying claims (which I am entitled to) for some of the compounding products I am on (have paid last 8 years mind). DH has just started on some this year too. This is worth $1200 per annum to us so I am fighting tooth & nail!!! They are wrongly claiming they are not Schedule 4 prescription meds which they are & I have State & Federal Legislation that lists them as such. Provided copies of same to Medibank & they STILL refuse to admit they are!!! Medibank local branch manager think they are nuts as does my Compounding Pharmacist. I insisted they put their decision & reasons in writing so I could lodge a formal written compaint with the Private Health Insurance Ombudsman which I did today.
Have lots to do...... still need to sort out study areas, computers, ref books, schoolwork, buy new furniture etc for Twins to ensure they are as ready as possible for school term. Did I mention they have been set plenty of homework so much for a school break!!! They need new shoes, schoolclothes, watches etc. Not to mention they want to sit for their Drivers Learners Permit (are 17 next month).
As far as my health is concerned naturally all this has had an impact. I have needed stress doses 4-8mg HC on semiregular basis. I have gone more HypoT with some bad neck/head symptoms so have taken extra 20mcg Tertroxin on occassion to manage that. Sleep is further disrupted often not sleeping until 4 am. Often because of appointments etc that I have got only 3-5 hours sleep as well. Lots of naps in late avo as a result & not waking refreshed at all. Certainly feel less anxious now that DD results are confirmed as clear so hope that things will improve. However other stresses & demands will still continue so maybe not.
Hate to think how badly I would feel if I hadnt had my Meds & supps supports though! Thanks to all for thinking of me & mine. I have been reading posts still but find my brain is not firing well at all. Been playing stupid Solitaire on PC over & over. It relaxes me somewhat but I resent the time wasted. Not good for much else for the present.
Feb 4, 2015 12:28:03 GMT -5
Feb 4, 2015 12:28:03 GMT -5