Yearly Update 2019

Hi all,

Yet again 2019 was a busy year and haven’t managed to do a update until today.

Firstly I’ll start with the main thing, my Brian tumour remains stable. Even though inside the tumour has now got a new cyst the team say it is post treatment and everything has remained stable.

I have had right sided facial weakness with some mild dysarthria. This has effected my smile, feeling on my tongue and speech so the Oncology team referred me to have a video fluoroscopy. This is a swallowing exam that looks at your ability to swallow safely and effectively. The results from this exam came back ‘normal’. So at least I know I’m not going to choke to death. All these thing have now been noted and I am waiting to have a full speech and language assessment. Oncology wise the team say I have probably had a microscopic bleed in my brain and the above are effects of this.

I have been prescribed new medication. I now take methylphenidate to improve alertness and attention. So it was trail and error to find a balance that worked for me. First was 10mg in the morning and 10mg in the afternoon, but this effected my sleep. They then decided to change it to 20mg in the morning which still didn’t work so then my dose was upped to 30mg in the morning and still remains at this. Up until I ever started taking this medication it wouldn’t have ever cross my mind that I wasn’t alert but taking this medication made me realise the difference. Cognitive problems have also occurred and mental tasks, related to attention spam, thinking and short term memory are now be an issue for me. Even though I still struggle daily with all of the above my Neurologist has told me there is other medication I can take or higher doses I can be put on. I have chose to leave my medication as it is at the moment though as I already know the long term effects of what I take and unless things progress and get any worse I don’t want to be putting more medication in my body.

Endocrine…. This is has been the biggest effect of having a brain tumour. At the beginning of the 2019, after a blood test, I was told I had a low B12 and so I had to have a B12 IM injection in my butt. Low B12 can be a rare side effect of long term use of Metformin. I last had my B12 checked in November and all was good. In October I found out that my Iron Serum levels were low and therefore I have Iron-deficiency anemia and now have to take Iron tablets. Another diagnosis to add to the list is Gonadotropin deficiency. Gonadotropin is a hormone released from nerve cells in the brain. It controls the production of luteinising hormone and follicle stimulating hormone from the pituitary glad. Obviously if you are deficient of this it means the individual will not go through puberty, leading to long term health problems. Dr Didi decided that he was going to induce puberty and get a dexa scan done. A dexa scan is a low dose X-ray to see how dense (or strong) an individuals bones are. They are used to diagnose or assess your risk of osteoporosis, a health condition that weakens bones and makes them more likely to break. I was told the results of this scan came back fine, which is a good thing. The treatment to induce puberty is a Estradiol Patch that was placed on my skin and changed every 3 days. After having my patch on for 2 days I became very itchy and had hives where the patch had been. An alternative of tablets were provided. My dosage started off at 2mcgs, then was upped to 4mcgs, then 6mcgs to then be told that the 2mcgs tablets were no longer available in whole if the UK. I was then prescribed a 5mcgs tablet that I managed to take for 2months before that became unavailable (just like many other medications in the Uk) So at the moment I am a 17 year old with no puberty. However there s no guarantee that even if the tablets were available that I would ever start a monthly cycle of periods. I now have a pump cream as another alternative but until I have another blood test I do not know if this is working.

In September I also started Sixth form on an exceptional entry. I enjoy going to college and at the moment my route is to become a lab technician. I wanted to look at jobs that would be able to be done part time and this job is one that can be done part time and is also a job I was interested in.

please feel free to leave comments or contact me for those of you who can through email, social media etc

Lockdown

I know I haven’t posted in a while but I have created a post but I’m still part way into writing it

It’s now six years into my journey and still plodding on. So far the tumour remains stable and my next MRI is in September.

Anyway I hope everyone is well. We’re now in a strange environment to what we’re normally use to. Sometimes I think God does natural cleansing to the world 🌍 but everyone is different and that’s just what I think. I will be posting a blog post soon but in the mean time keep safe

love from angel

What next….

Trying to get my head around the results i(Bev) really had lots of questions I should have asked whilst with the team so I rang the nurse specialists for answers the next day,first of all how can something that is calcified change, what is meant by nobbly as I can not find a description for nobbly with a tumour,what about the cystic part of the tumour,why was we not shown the image and the worse thing going around my head was what happens if this is really bad news I don’t know what my daughter wants for her funeral.The nurse explained that what happens next is a specialised radiographer goes over all the images and then the team discuss the results and then the consultant will ring me to let me know  the next stage, why could they not have said this in the meeting?

Two and a half weeks later I get a call,they will repeat the mri in 4months time as 3 will be too early, not all of the  tumour is calcified, which I didn’t know. The cystic part of the tumour is fine,so don’t have to worry about that and the change is on the outer edge,tumours can have very suttle changes it’s quite normal.

Still keep thinking about what Dr Danny said when we saw him last year for her proton review appointment, as long as the tumour stays stable Angel will be ok.

WHEN STABLE BECOMES A CHANGE

 

24th April exactly the day before my 4th year from diagnoses of an inoperable brain tumour I had my 6 monthly routine MRI and MRA. Obviously they have been every 6 months for the past year.

We did the ‘normal’ routine of attending the oncology daycare to have cannula inserted to be able to have contrast injected into my body, contrast makes certain tissues and blood vessels show up more clearly and in greater detail.

An hour later I go to the Radiology Department to have my MRI and MRA, Mum does not come in with me, I always go in on my own. On average I am in the machine for 45 minutes, luckily I get to watch a movie while I’m in there.

When I came out the machine Mum and I got dinner and went up to the Oncology Clinic and waited for The Oncology Team to call me in to discuss  the results as they normally do.

My name was called and in the room was Dr Thorp, Helen and Dr Howell, they quickly looked over the  results but not in depth, and there was a change to my tumour and it had gone ‘Nobbly’, I ended up in shock and cried, and that was it.We were then told not to worry things like this happen, which is easier said then done, and that they would repeat an MRI in 3 months and someone would ring the s back once images have been looked over.This was the first time I had been told that my toumour wasn’t stable, the first time we had never seen an image of the tumour or they change they were on about. So we then left the room and we’re left in limbo  ready to attend our next appointment.

Our next appointment was Endocrine and Mum wasn’t even in the right frame of mind to discuss results that they said were “Satisfactory” to only find out when paying privately to see a consultant, at Great Ormond Street Hospital, that from midnight to 6am my levels were unsatisfactory, only went to see this consultant re self funding for an adrenal pump which we never ended up discussing.

Dr Didi, was happy to do what was instructed by Professor Hindmarsh, this was that I was to take another half of hydrocortisone tablet at mindnight. Dr Didi also wanted to take and test some bloods, so requested my normal Endocrine bloods plus Vitiman D, B12, Iron and inflammatory marker,also to have us back in 8weeks time to repeat a 24hr cortisol blood profile to check the cortisol levels with the new midnight dose.

Off we went to oncology daycare to find the nurse who takes the bloods and then set off home.

Happy New Year 2018

 

A happy new year to all my blog followers, I hope you all had a good time this Christmas and new year in 2017, and I hope 2018 is a good one for you all.

Sorry I didn’t post anything in 2017 but last year was a rollercoaster of a time for me. I don’t know where to start as it has been full on every month.  The year started with tests and ended with more.

After finally being referred to a neurologist re what we were told was eds (extreme daytime sleeping) I had a Polysomnography test- this is an over night sleep study, where electrodes are place on the head to accurately assess whether the patient is asleep and what stage of sleep they are in. Followed the next day, by a Multi sleep latency test- this is a test which measures how long it takes you to fall asleep during the day. I was asked every 2 hours from the test being at 9am and the last test being 3pm to try to fall asleep, and a specialist analysed how quickly and easily I fell asleep.

The diagnosis for these tests were secondary narcolepsy and cataplexy.

Secondary Narcolepsy- occurs with injury to a deep part of the brain called the hypothalamus.  This is a rare long term brain disorder that causes a person to suddenly fall asleep at inappropriate times. The brain is unable to regulate sleeping and waking patterns normally which results in sleep attaks (falling asleep suddenly and without warning)

Cataplexy- this is a temporary loss of muscle control resulting in weakness and possible collapse, often in response to emotion such as laughter and anger.

This is treatable with medication but I have yet to still find a balance with my medication for this.

 

I also managed last year, to do a 5K run for cancer research UK and I would also like to thank everyone who sponsored me. I managed to raise a grand total of £886. The run took me just over 1hour as I was stopping and resting. The run was from Bispham Hearts Amusement to South Pier.

I had my 6monthly MRI and MRA as usual the Brian tumour remains stable. 👐🏼

Unfortunately my Uncle Fred died at amazing age of 94. I have some amazing memories and he will never ever be forgotten.

I now have regular cognitive screening tests due to short term memory loss and hypothalamic dysfunction.

And we also finally managed to get back to Jacksonville FL to see my amazing friends and amazing Medical team at the Proton Clinic for my review appointment and to have some fun in the sun.

Plie

Plie

Plie

Plie

Plie

Plie

I ended the year with tests in December with a 24 hour blood profile this was not easy for the team on oncology as they put in 4 cannulas and all 4 failed. My bloods had to be taken every 2 hours and near enough ever time they had to do finger pricks as my veins collapsed. This was to test my cortisol levels.

This year I will do more regular blog posts sorry for the delay.

Part 4-Things were easier in the beginning

Multi-disciplinary meeting was attended by Angel,Bev,oncology nurse specialist,clinical psychologist,educational psychologist and Dr Thorp who led the meeting.

Angel was struggling at school with fatigue, memory problems and mood swings such that she now attends school on a part time basis.Medically Angel is doing well, in terms of her non-medical ongoing issues they are as follows , she continues to be troubled by profound fatigue, this impacts on the amount of school that she is able to attend , and if she does a full day at school then she only manages a couple of hours the following day along with fatigue comes poor concentration and diffulties in lessons.

Angel describes sporadic poor memory. She loses things easily, has episode of mixed up alphabet letters.She has also found that she has had missed letters out in writing words.Bev feels her spellings and writing has gone backwards.

She is troubled by mood swings, she loses  her temper at least everyday. In terms of school she has decided to drop the options Science Drama and History and to only do Music  Science and Art Textiles,  creative subjects Angel manages better with.

A neuropsychology testing which was done in December 2015 noted that her verbal memory scored significantly lower than her other score which may explain her difficulty at school. She has also undergone a dyslexia screen in school which all scores seemed to be below average. However, it was felt important to point out that this is a screening rather than a diagnostic test and the results will vary from day to day depending on the level of fatigue.Although this may highlight some dyslexia traits, this does not mean that Angel has dyslexia. However it may mean that the coping strategies that would normally be used to overcome a low verbal memory score may not be appropriate for Angel.

Dr Thorp noted that it had been agreed with school that she will enter the educational diversity program and receive home schooling in the September for Maths and English whilst attending school for her options. We have agreed that this is a good compromise certainly in the short term but Angel should be kept under review and monitored as things improve for her she continue re integration into normal school if possible. It is also important that we continue to highlight Angels many positive attributes she has been through so much in the past couple of years with her health but continues to present as a bright lucid sociable and resilient teenager. It is the aim that Angel has the appropriate level of support but also normality to enable her to achieve her ambitions and fulfil her potential.

Bev expressed her opinions in the meeting and said health is her main concern, if she does well in school it is a bonus for Angel and for her not to worry about exams ect just do what she is capable of doing.

We were even informed that with everything that is going on with Angel they may not be able to given the reasons why, which left her feeling  shocked and as for the meeting what a waste of time as Dr Thorp was happy with what we had in plan for Angel when she returned to school to commence year9.

Part 3-It’s harder now than it was in the beginning

After trying to sort out education for Angel,and to get her some normality with her attending school, and the many issues she has due to the brain tumour, and informing her team and school of the changes we had made,everyone was happy  with a reduced timetable for Angel in school, you would kind of feel that things would run more smoothly for her, but this was not the case.

The day after seeing Dr Did Bev received a phone call from Dr Thorp at Clatterbridge Cancer Centre, she was concerned that Angel was only attending school on a part time basis and Angel needs to fulfil her maximum potential, so a multi-disciplinary meeting was arranged for 16th August.

Bev was absolutely furious, this was in the middle of August so plans for a return visit for her check up at UFPTI was postponed, she physical dreading telling Angel as she knew exactly how she would respond, especially with not  getting back to Jax  second year on the run.

When Angel returned from school she was in tears being told about the meeting ,which then turned into anger with her saying ‘as long as my brain tumour is stable and my hormones are ok that should be all that matters, does it matter if I don’t do well at school  or my brain does not function properly,all that should be there main concern is my brain tumour stays stable and I can learn to live with all the other things that go on ( if any of you know Angel really well you would know a lot of swears words will be in with her comments) Bev totally agreesd with how Angel was feeling,  and was going to express her feelings at the meeting.

Part 2 – it’s harder now than it was in the beginning

First of all apologies for not updating the blog more sooner, things have been full on for Angel over the last few months,lots of appointments and her medical issues having a daily effect on her.

As with the previous post, this is the update of the results of tests etc.

Angels thyroid function checked recently showed free T4 of 10.5 and a TSH of 0.31mU/L, which is normal, her energy levels are variable but sometimes quite low, he felt it would be worthwhile to increase the thyroid dose from 50mcg to 62.5 mcg daily, to see if energy levels improve., also Angels growth had slowed down so he increased the growth hormone injections from 1.1mg to 1.2mg.

She is still struggling with episodic changes in moods, facial rash(vascular flushes) temperature and also memory, he warned Angel and Mum there might be a component from her recent proton beam therapy radiotherapy with regard to memory and energy levels and a psychological component to some of these and some of the other symptoms.However he is in no doubt that Angel has a prominent hypothalamic component to her symptoms.

He is to review her in 4 months.

Part 1 – It’s harder now than it was in the beginning

Really struggling with doing a blog post with everything that has been going on for tumour trooper so I will do it in a few parts. Photos below are all of happy times for Angel, the beginning of her journey.

As most of you will be aware if you have Angel or Bev on Facebook,things have slowly caught up with Angel over the past months and she has lost her sparkle feeling low and hates having a brain tumour, in her own words it’s harder now than it was in the beginning.

School for Angel has been a struggle since befor Easter, up until May 29th she has had at least one day off a week, which is due to either fatigue or aching and being stiff and falling asleep a lot during the day, blame the hypothalamic syndrome, not only this she has had moments of forgetfulness, forgetting the alphabet, doing basics spellings and writing sentences , words only part there and when asking her to read what she has wrote she will say what she sees is there but it is not, as she is stressed about forgetting things and not being able to remember things she has even had a rage were she has pulled some hair out.

Best decision for Angel was to reduce her timetable so she just does the options she has chose and the core subjects and drop all the other subjects,but she is in school everyday.

Bev tried to get hold of Dr Didi(endocrinologist) to see if he could see her early to check all her hormone levels, but could not get anywhere, she also updated Natalie her clinical psychologist what had been going on and an appointment was arranged for 31st May at Alder Hey.

The clinic appointment went well, Natalie is sorting out support for Angel in Blackpool as seeing her infrequently is not enough, she needs something more often in Blackpool even if that is in school, Natalie had got hold of Dr Didi herself and informed us he would see us at oncology clinic at 2pm, Bev thinking he had a clinic then.

On arrival at oncology clinic, it was not endocrine clinic it was immunology but they knew Angel was coming, normal weight height was taken and not long after that Dr Didi arrived, he had only come especially to see Angel he did not have a clinic that day , (Bev is so glad she asked to change consultant to him, it makes a massive difference he actually listens to what is going on with Angel and puts himself out for her). Bev did all the talking he just listen, all Angels hormones levels that were last done were normal so Angel was to have her blood done again, to check her thyroid levels,even if the levels are still showing normal he was still looking at upping the levothyroxine to give her a boost to see if the issue of tiredness was to do with that , he did stress to Angel the effects of hypothalamic syndrome and was she happy, which Mum did think at the time she was,so off they went to have bloods taken for Mum to ring back in a couple of days to get results.

Part 2 to follow

Sleep EEG

Angel attended Blackpool Victoria Hospital for this test to see how much melatonin she absorbs, as she doesn’t produce it ,or very little. She never slept well before diagnosis of the brain tumour and still has hit and miss nights of being able to sleep,the issue is not with going to sleep but actually staying asleep, if Angel needs the toilet in the night she has to go in the dark as if she turns on any lights it will stop her from getting back off to sleep, and due to her hyperacusis the slightest noise can way her up(very sensitive hearing)

A brief description of –

Melatonin is produced by various tissues in the body,the major source is the pineal gland in the brain

The pineal gland is a small pinecone shaped gland of the endocrine system,which produces the hormone melatonin.Melatonin influences sexual development and sleep-wake cycles.The pineal gland connects the endocrine system with the nervous system in that it converts nerve signals from sympathetic system of the peripheral nervous system into hormone signals.

So as we know Angel is MPHD(multiple pituitary hormone deficient) it all has a big impact on her,as everything that Angel has issues with is silent, a regular comment by people is how well she looks but that is not the case, at the moment her brain tumour is stable but all the endocrine issues have the biggest impact on her day to day life.

THE TEST

Angel had to be awake at 5.30am to have a light breakfast then drink nothing or eat nothing after 6am.

She arrived at hospital by 7.45 to have obs taken ready for the test, due to Angel suffering so much with fatigue lately she was starting to fall asleep Bev had to keep shouting at her to stay awake, at 9am the neurophysiologist who does the test took her into a side ward to start putting the 23electrodes on her scalp.

The investigation is painless  and a recording during sleep can be helpful. Angel was given some sedation to enable sleep, which for Angel worked well as she was struggling to keep her eyes open on arrival, the test took 1 hour and results are not given on the day.

Update will follow when we have results