Thursday, 19 December 2013

This is MY brain talking .... is it YOURS TOO?

A LETTER FROM YOUR BRAIN
(Author: Thomas F. Quirk)
(6-2011)
 
Hello,

I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.
 
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.
 
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.
 
How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?
 
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.
 
What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y be patient and accepting of what I am now. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or angry, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best and I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.
 
I want us to live, and breathe and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that and be accepting of me if I am different.
 
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
 
Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
 
Love,
 Your Wounded Brain

Thursday, 17 October 2013

I am truly grateful but I just wish I was a bear ...

I am truly grateful to have a loving (and lovely) family, good friends, a nice home and full mobility. But I would so love to be symptom free. Apart from being very depressing it all makes me feel sooooo tired!

I thought that I was on the upward trail a couple of weeks ago but WHAMMO its all back again this week, and the headache is a real bitch of one.

I think that I will have to try and get an appointment to see a neurologist again if things don't settle down.

I just wish I was a bear!

Saturday, 27 July 2013

Forgetting what I have forgotten .............


Yes, my memory is slowly but surely getting worse! My consultant says that there are no signs of dementia or Alzheimer's disease so what is happening? It must be due either to Feckit or the radiology is all I can think.


I am unable to memorise the names of bowlers that I play regularly with once or twice a week;


I am unable to remember certain events that happened in our lives when John talks about them, and this is happening more and more frequently; 



I have had 'conversations' with different groups of people via private messages on Facebook, or with friends/family via email, and have no recollection of having done so. 



It is frightening and very upsetting!  



Added to this forgetting words, mostly proper nouns, in the middle of a sentence is making conversation a bit of a trial. Talking with friends is bearable because they are used to me going silent and waving my hands around! But it is so very embarassing when talking with strangers or people I do not know well ...... they must think I am a very strange woman indeed! 



And yes the headaches, nausea and facial tingling are still going on, but at least I get some days when I feel fairly normal. But have had no more Trigeminal Neuralgia - thanks to Tegretol tabs!  

But onwards and upwards, as they say ........... now what is it that I have forgotten .........


Friday, 26 April 2013

Bad Hair Days ........




Isn't it strange how suddenly over the course of a couple of days your hair just goes BAD, and it seems that you can do absolutely nothing with it? Well, I am having one of those days, lol!

In fact this week has been a bit of a trial altogether so the hair thing is just one more little aggravation!

On Monday I had a second lesion removed from my mouth. It was just a tiny little hard lump low down inside my left cheek ... and on excision looked just like a blocked salivary gland. I am not worried about it and it has gone for histology. 

But on Tuesday I started a horrible head cold and since Wednesday the little wound site in my mouth has become quite sore, particularly when eating.  Not that it has stopped me from doing so, I might add!!

Of course, anything wrong in the head area always seems to exaggerate the antics of Feckit and Fuss so I haven't been much good for anything, except for playing on the computer! But any excuse to give the duster and vacuum cleaner a wide berth is a good one in my book. 

Actually the computer is wonderful therapy as I can 'chat' with family and friends on Facebook and write my blogs, whereas when I start reading my new Kindle I just fall asleep! Not because the book I am reading is boring but because that is what I'm like nowadays!

So the PC and Facebook are my therapy, especially on Bad Hair Days like this one!



Saturday, 30 March 2013

A sad goodbye to Ollie and Pru

Born in the same litter in 1996 these two cats have given endless love, pleasure and (hair-raising) adventures to the humans in our family. Ollie died 26 October 2012 and Pru started her final sleep 29 March 2013. We loved them so.










Tuesday, 26 February 2013

what a difference a few days make!

After the elation on finding out last Thursday that the pigmented lesion in my mouth was not something like a horrible melanoma but was merely an amalgam tattoo (stain), its been a downward trip on the seesaw again!!

Over the weekend I began getting those stabbing pains in the left rear teeth again at irregular intervals. By the time I saw the oral surgeon, Justus, on Monday evening to have my stitches removed I had not been able to eat or drink all day and barely dared speak for fear of bringing on an attack!

Justus wanted the full background on this (started over 8 months ago) so I told him about the onset of the tinnitus, the start of the lighting pains in my teeth, the increase in dose of Amitriptyline from 10mg to 30mg, and how a full check out by the dentist found nothing. And how it had virtually died away after two bad bouts in August, etc. I said about the visual hallucinations that it was raining that started in November and how this had led to a temporal artery biopsy which had ruled out Giant Cell Arteritis.

I explained that since then I had only had a few very short spells until last weekend when I suddenly started with really mind-blowing attacks once more. As before talking, chewing, drinking or touching my mouth or the left side of my face seemed to bring it on.

Justus then gave my face, neck and mouth a very careful examination and found a small firm lump very low down in the left side of my mouth which he would like to biopsy (oh joy!). However, he does not think this lump is involved with the pain attacks which he says are classic symptoms of Trigeminal Neuralgia. He advised me to let the radio/oncologist know as he thinks it may be related to Feckit, and to also speak to my GP.

I duly wrote to my specialist and I saw my GP, Dave, today who phoned her to discuss. The upshot of all this is that they both appear to have agreed that it is NOT due to my meningioma which I find truly amazing considering that Trigeminal Neuralgia can be caused by meningiomas in the petro-clival region or so the literature says.

http://www.mayfieldclinic.com/PE-MENI.html 


"Posterior fossa meningiomas: grow along the underside of the brain near the brainstem and cerebellum. These tumors can compress the cranial nerves causing facial symptoms or loss of hearing. Petroclival tumors can compress the trigeminal nerve, resulting in facial pain (trigeminal neuralgia) or spasms of the facial muscles. 


Posterior fossa meningiomas

Posterior fossa tumors lie on the underside of the brain. These tumors can compress the cranial nerves causing facial symptoms or loss of hearing. Petroclival tumors can compress the trigeminal nerve, resulting in sharp pain in the face (trigeminal neuralgia) or spasms of the facial muscles. Tentorial meningiomas or those near the area where your spinal cord connects to your brain (foramen magnum) can cause headaches, or other signs of brain stem compression like trouble walking.


"Stereotactic Radiosurgery for Patients with Trigeminal Neuralgia Associated with Petroclival Meningiomas"
Kano H. · Awan N.R. · Flannery T.J. · Iyer A. · Flickinger J.C. · Lunsford L.D. ·Kondziolka D.  Stereotact Funct Neurosurg 2011;89:17–24 (DOI: 10.1159/000321187)

The really good thing is that Dave has started me on carbamazepine (Tegretol) - a psychiatric drug that has been shown to sometimes be effective in controlling/reducing the pain associated with this kind of neuralgia. I am to take this in addition to the Amitriptyline. I am to see him for a review in 3-4 weeks time.

So it's Onwards and Upwards once more!!



Thursday, 21 February 2013

Good news day!

Got the result for the gum and jawbone biopsy ... and good news! It was an amalgam tattoo after all. Fantastic to be cleared of the worry of melanoma!

Also saw my radiology consultant about the MRI result and the queries that I had about size differences. Apparently the reported sizes vary because the MRI 'slices' may not be in quite the same place each time. So as a tumour is a 3-dimensional entity one slice may be wider or longer than another. As the differences were only 0.1cm that was reassuring to know. She said that should Fuss increase in size on the next MRI then it would need looking into, but for now the 0.1cm increase might be just because of a different view.

The specialist also suggested that we go to bi-annual MRI's from now on but I said that, unless and until my symptoms ease off a bit, I would prefer to keep to annual scans for the time being. She agreed to this and so my next MRI will be January 2014. She is unable to explain why I get these constant headaches and nausea, nor the tinnitus. Nor my memory difficulties ... but she reassured me that my brain shows absolutely no sign of Alzheimers disease!

So, all in all, an encouraging week on the health front! GOOD ...


Wednesday, 30 January 2013

One step forward, one step back ....

OK, so I have not received an email or letter in response to my query regarding the change in measurements of Feckit and Fuss, but I have been sent an appointment at the Oncology/Radiology Clinic for 21 February. I kind of get the feeling that I have offended someone by asking .... but I will have my questions answered in person at least!

Another development in this ongoing health saga is that when I saw the dentist for my six-monthly check at the beginning of the month she was concerned to find a small dark red area high on my gum above my front teeth. The area is completely painless and I was not aware of its existence as it is so high up. Anyway I was referred to the oral surgeon for his opinion and saw him last Monday following a short wait of 3 weeks.

The oral surgeon (OS) was concerned to find that the discoloured area has now turned black although it is painless unless probed or forcibly pushed on. After taking a full medical and dental history he went on to explain several possible conditions which can cause pigmentation in the mouth and identified the most likely which might be implicated in my case.


"The oral cavity is a common site of various brown or black pigmented lesions, e.g., amalgam tattoo, pigmented nevi, Addison’s disease, Peutz-Jeghers syndrome, racial pigmentation, melanotic macules associated HIV infection, smoker melanosis, drug-induced pigmentation and melanoma."


"The amalgam tattoo is a frequent finding in persons who have had amalgam restorations (ie, fillings). When the amalgam is removed with a high-speed dental handpiece, amalgam particles can be embedded or traumatically implanted in the oral mucosa. Silver from the amalgam leeches out of the embedded particles and stains (ie, tattoos) selected components of the fibrous connective tissue (eg, elastic, reticulin, oxytalan fibers) and highlights the blood vessels. The pigment is often solitary, macular, gray-black, and found near where amalgams were placed and subsequently removed."

Because this lesion has appeared where a "post" from a capped tooth was removed in 2009, just prior to commencement of my radiology treatment, OS feels that it is possible that this might well be the cause. 

INFECTION:

The OS felt that infection, although a possible cause, was less likely as there are no visible signs such as swelling, exudate or pain.


This he felt to be another possibility resulting from the "post" removal followed shortly after by radiation therapy, which may have compromised the blood supply to the bone.

MELANOMA:


Oral melanomas arise silently, with few symptoms until progression has occurred.
Most people do not inspect their oral cavity closely, and melanomas are allowed to progress until significant swelling, tooth mobility, or bleeding causes them to seek care.
Pigmented lesions 1.0 mm to 1.0 cm or larger are found.
Reports of previously existing pigmented lesions are common. These lesions may represent unrecognized melanomas in the radial growth phase.
Amelanotic melanoma accounts for 5-35% of oral melanomas. This melanoma appears in the oral cavity as a white, mucosa-colored, or red mass. The lack of pigmentation contributes to clinical and histologic misdiagnosis.

"The prognosis of Primary Oral Melanoma (POM) is much worse, with 5-year survival rates generally ranging from 10% to 25%, or according to some authors 15%-38%, partly because of diļ¬ƒculties to detect pigmented lesions and poor resectability due to the anatomy of the region, major extension in depth versus cutaneous melanoma, and early metastasis.

The median survival for all POMs is slightly over 2 years (18-46 months) from the time of diagnosis, depending on lymph node involvement, increased tumor thickness, and level and vertical growth phase of the tumor at the diagnosis. POM is an uncommon malignant tumor that originates from melanocyte proliferation.

BETWEEN A ROCK AND A HARD PLACE!  .......... That is how my OS described the position with regard to any treatment! 

If he excises the area and finds bone destruction (osteonecrosis) the healing time may be very long because of the prior radiotherapy.

But because there is a small chance that it may be a melanoma then the area must be excised and sent for histology as soon as possible in order to get a definite diagnosis. 

I understood only too well what he was saying and felt that a definite diagnosis was essential for both of us in order to plan how to proceed. So I am booked for an excision under local anaesthetic on 11 February.

I am hopeful that this little black area on my upper gum is merely an amalgam tattoo from all the previous dental work that this tooth received.


Thursday, 24 January 2013

"can I make it on my own?"


This month I had my annual MRI scan to "check up" on my two skull base meningiomas, Feckit and Fuss.

= = = = = = = = = = = = = = = = = = = = = = = = = = = = 

FINDINGS
The homogeneous high T2 signal and enhancing 2 cms left petroclival mass remains similar in size and appearances with sparing of the cavernous sinus.
(in January 2012 this tumour was 2.1 cms)

The homogeneous high T2 signal and enhancing 1cm crista galli mass is also unchanged from previously.
(in both March 2009 and January 2012 tumour was 0.9 cms)

No other new lesion or abnormal enhancement is seen.
The overall parenchyma remains normal with preserved ventricles.

COMMENT
The two meningiomata are unaltered.

= = = = = = = = = = = = = = = = = = = = = = = = = = = = 

The following are (referenced) conclusions with regard to observation and follow-up for meningioma and are from: 

Radiation_Oncology/CNS/Meningioma


Majority (~2/3) of asymptomatic, incidentally found meningiomas are stable on imaging. If they progress, the rate of growth tends to be 2-4 mm per year and tumor doubling time is on average 20 years

Calcified and hypointense on T2 meningiomas appear less likely to progress; elderly patients appear to have slower growth rates

Reasonable to consider observation for asymptomatic meningiomas, particularly in elderly patients or patients with skull-base (high operative risk) tumors. If so, MRI at 3 months, then 6 months later, then annually is considered reasonable

For younger patients and patients with non-calcified tumors, consider treatment due to higher expected growth rates

oooOooo


I have not been given a neurology appointment for 2 years now and the radiologist-oncologist does not think it necessary that I see a neurologist this time either. I am happy with that. She also suggests that they switch from annual check MRIs to 18-monthly ones .... not so happy with that but will go with her decision. 

However, I would like to know why Feckit (the one treated with radiation) appears to have reduced in size by 1mm while Fuss appears to have increased in size by a similar amount. So, as I am unlikely to speak to any specialist for a further 18 months, I have written asking whether the measurements given in the radiology reports are accurate or only approximations.

This may well be considered an imposition but I think it is entirely reasonable to ask for an explanation of the apparent changes in size of both tumours (especially as both are described in the report as 'unaltered'). Hopefully I will receive an answer before too long.

It is unlikely that many specialists have any concept of what it is like to walk around with a couple of tumours inside your head which may or may not be affecting your brain's functioning both now and in the long term! 

Of course I am very grateful that Feckit has been treated (apparently successfully thus far) and hope that he/it will shrink over time, but I am concerned that Fuss may be actively growing and need an answer if I am to "make it on my own" ........  as apparently I must.



Tuesday, 8 January 2013

Farewell to 2012 ...... a year in pictures!



JANUARY

We went for a weeks trip to Melbourne to visit with our son who was on holiday there. We had not seen each other for over 10 years!


And I also had the pleasure of meeting up with some distant Aussie relations tracked down via my ongoing interest in family genealogy.



FEBRUARY

Our French friends At last came over to New Zealand for a holiday and visited with us. It was wonderful to find that nothing had changed between us .... the years apart just rolled away!



MARCH

Once again I enjoyed entering a St Patrick's Day Bowls Tournament!


Our Golden Wedding Anniversary .... its hard to imagine even now that we have been married over 50 years!  Of course, we had a lovely celebration with NZ family and close friends!





APRIL

The end of quite a successful bowling season!



JUNE 

The arrival in UK of a lovely grandson! 


JULY/AUGUST

I took a trip to the UK (on my own!) to visit our youngest daughter and her new baby boy. It was wonderful to see her after so long!




And to see our eldest daughter and grand-daughter again!







And catch up with most of my mad rellies!




AND have lots of cuddles with the baby!!




OCTOBER

We had to say goodbye to dear old Ollie ..... 16 years young. What a treasure and joy he was.



DECEMBER

BIG family Christmas holiday with our middle (NZ) and youngest (UK) daughters, their husbands and lovely children!


















So another year over and a new one has begun ................ !!!