December 30, 2003

The Latest

Jules has had an assessment from the local hospice, Letchworth Garden, and they'll be giving their answer next week. It look's likely that she'll be moving there soon, since the level of care at Lister isn't as high as that at the hospice.

As for Jules herself, things are still progressing slowly, although some things are taking a back step. Her energy levels seem to go up and down each day, with some days full strength, and others no strength. She's still able to communicate, read, and give as good as she gets. It's now more of a case of picking a good day to chat. On the bad days she's simply too tired to try, and needs lots of encouragement to try.

Physio and occupational therapy continues, but struggles with her energy levels. She's now taking days out when things are too much, so it isn't a daily routine as before.

A friend mentioned the other day, "Has she lost her marbles?", which I could understand as she's not anything like she used to be, the chatterbox of old. But I soon put them to rights, explaining she's still got an eye for detail, reading anything she has to sign (student loans being one), and writing down lists of things to be done, bought, etc...

Posted by alan at 4:44 PM | Comments (1) | TrackBack

November 14, 2003

The Diagnosis

Having now got a detailed description of Jules tumour, as with other info, it's posted here.

Jules has:

  1. Malignant meningioma (temporal fossa, Caverno-sinus, Suprasellar)

  2. Right sided MCA infarct

In 1988 Jules was diagnosed with acute lymphoblastic leukaemia which was treated with chemotherapy and radiation. She also received a bone marrow transplant in the same year.

In 2002 she developed left facial weakness, unsteadiness on her feet, and a tremor affecting the left side and poor memory. Her MRI showed a large middle fossa, right sided meningioma which was partially debulked in April 2003.
She continued to deterioate with regards to her vision and a repeat MRI scan showed an increase in the size of the tumour with deviation of the optic chiasma. She had frontal craniotomy and subtotal excision of the residual meningioma on the 21 August 2003. This was complicated post-operatively with right MCA infarct resulting in dense left hemiplegia and complete right 3rd Nerve palsy. She then developed a large subgaleal collection, CSF confimed infection and she was treated with the relevant antibiotics. She then also developed mild diabetes insipidus and she is currently on DDAVP.

She has regained some power in her left leg, however none in the upper limb. Her speech was affected, however this is gradually improving. She initially had an NG tube which was removed, but replaced when she was sick. She is able to eat soft foods, pureed or chopped up. Her memory has not worsened following her surgery and generally she is not depressed. She has pain in her left side which is relieved to a certain extent with correcting her posture.

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November 13, 2003

What Are You On?

So that as many people have an understanding of Jules treatment I'm aiming to post more and more detail on what's what. This one covers a comprehensive list of the drugs and medicines Jules is taking.

Thyroxine100mcg1 x daily
Paracetamol1 g4 x daily
Codeine Phosphate30 - 60mg4 x daily
Ranitioine150mg2 x daily
Senna10ml2 x daily
Milpar10mls2 x daily
Baclofen10ml2 x daily
Hydrocortisone20mg3 x daily
Clexane20mg1 x daily
Desmorpressin10mg1 x daily
Multi-Vitamin's & Iron1Every morning
Evening Primrose Oil1Every morning

Long ain't it :-O

Posted by alan at 11:51 PM | Comments (1) | TrackBack

October 20, 2003

Talk & Swallow

Well, having had a long chat with the Speech Therapist today I understand more what's being done, and reasons as to why she's drinking one minute, and slushing the next.

We've also got a good idea on diet and things she can do too (click away for more).


The post-op stroke has affected her swallow muscle control. As a result if things are too runny they'll pass down her throat without her noticing what's going on, and so mean she'll end up coughing, and eventually get a chest infection.
Also, her energy levels are quite low, which is affecting her swallowing. She's not got the energy to chew a lot, and so will end up swallowing larger bites and choking. Hence it's better to eat puried foods until her energy levels are back up and she's able to chew for longer.


Her understanding is good, when not too much information is presented. Complex verbal info, and reading seem difficult. She's able to understand language very well, but concentrates on the important words. As with the swallowing this might be affected by her energy levels too. The impairment is order based, i.e. things don't necessarily come out as they should, e.g. vowel sounds. They get muddled up between the brain and mouth. The brain is slowly relearning what is what. Different parts will take over the damaged bit, the therapy aiding it on it's way.

Things To Do
  1. Simple books, e.g. Mr Men, so they'll be going down next time I'm there :-D

  2. Read magazines and newspapers to her, both as something to do, and as an aid to her understanding of language and speech.

  3. Gentle correction to what she's saying, rather than complete correction, so she's getting a chance to correct herself rather than listen to someone tell her what she should've said.

Things To Eat
  1. Light sponge cakes, but nothing too dry. Cake and custard would be a good one

  2. Stews and curries, but slowly cooked so that the meat is extremely soft

  3. Fruit smoothies, milkshakes, ice creams

  4. Anything mashed up, but no large lumpy bits, it needs to be soft

Posted by alan at 12:54 PM | Comments (2) | TrackBack

October 6, 2003


[Taken from 2 May entry]

So it's a meningothelial meningioma

malignant due to transitional pattern
nuclear atypia
brain invasion

(progesterone receptor + MIB-1 > 10%)

Articles [UPDATED] on explaining what a meningothelial meningioma is and case studies re:Possible cures I've found here:

Meningiomas: Benign by Histology, Malignant by Location

New Approaches for the Treatment of Refactory Meningiomas

Clinical Trial Imatinib Mesylate in Treating Patients With Recurrent Malignant Glioma or Meningioma

Management of Cranial and Spinal Meningiomas

ABSTRACT - Hormonal steroid receptors in intracranial tumours and their relevance in hormone therapy

Long-term prognosis for atypical and malignant meningiomas: a study of 71 surgical cases

Google Searches
research into malignant aggressive meningioma meningothelial

meningothelial meningioma MIB-1

Posted by alan at 2:21 PM | Comments (0) | TrackBack

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