May the month of May be the month I get answers?

Well where to start?  Not much has gone on really, infact NOTHING.  Oh I did get the results from my last 6 month scan and apparently my kidney tumours have grown but nothing to worry about...........easy for them to say!  I was also quite shocked at how surprised they were when I called the genetics clinic to ask how much they had grown by and what the current size was, surely as it is my body at the end of the day, then I am entitled to ask?

So after having a meltdown over the fact that I also have another tumour on my left kidney, I am still left worrying about my adrenals and pancreas.  I am STILL not on the correct drug that Professor Grossman advised my GP that I should be on back in March, apparently all the forms are completed and now we wait for the PCT to approve funding, in the meantime I get worse and no ones gives a damn, NHS wise that is, I do have some concerned friends out there who probably are getting sick of me complaining all the time, I know that I am getting sick of complaining all the time.

As my bones and joints are hurting so much and if I want to go for a walk I have to use a stick as my balance goes, I decided to buy a bike, well I went out on my bicycle and ran out of energy about a mile from home, I also had real pain in my wrists which was a shock but at least I didnt have any pain in my ankles, which was the point of trying to cycle instead of walking, so that form of exercise is out the window and I am debating taking my bike back to the recycle centre and see how much they will give me for it as its just sitting in the hallway getting in the way.  I then decided that maybe I should try swimming, the local government baths are not so busy as gyms, so I decided to get a leisure card, which as I am on benefits only cost £7.00 for the year instead of £17.00 and you get money off each time you go.  An off-peak swim is only £2.20 so I should be able to afford that a couple of times a week.  I have downloaded an app that gives me all the swim times for my local pools and I can even sign up to some challenges, I have done one already which was 24 lengths.  Even though I feel fine in the swimming pool, I do get a bit of back ache but I just change which swimming stroke I am doing, I find that once I get out of the pool that I my whole body weighs a ton and I struggle to get back to the changing rooms, I am hoping a few more swimming session will make my legs stronger and I will not suffer so badly.

May the 17th is a big day as I am off to see the Wizard the Wonderful Wizard of Oxford, well infact I am off to see Professor Grossman but that sounded better.  I am going on my own which is not a good idea but everyone else has lives so I cannot expect them to be there at my beck and call, especially as I do not like asking for help.  I went armed with questions last time but never asked any, I get too emotional and I just cannot think straight, it is going to be harder this time as I am now anti-depressant free and have been since 15th March, it has not been easy and I am a complete nightmare to be around.  I really hope he has some answers for me as things are getting very difficult for me and financially it is all become too much and I cannot deal with the stress for much longer.

The days I cannot get out I am doing more crochet, I have about 4 projects on the go at the moment, my favourite is the baby blanket I am making for my wonderful friend in Milton Keynes, Wendy Johnson.  As I am not sure if she is expecting a boy or girl I am doing it in multi coloured wool and it is coming out very pretty.  I also made a sheep from a book I was given one christmas by the wonder Karen and Ian Lawrence, I will make more from the book when I feel well enough to try a new pattern.

We also have a new member to the family, a white male cat who was called Stinky but I have renamed him Merlin, he is deaf and has one blue eye and one green eye.  He has a special collar with a tag that tells people he is deaf and has my telephone number on it as he loves to explore outside, he mainly sits up very high so that he can have a good view on what is going on around him, so that nothing can sneak up and surprise him.  He loves Poppy the bunny but I am not sure she feels the same, he is also very clumsy and leaves a trail of destruction behind him, I suppose because he cannot hear the plates, cutlery or ornaments falling down after he has walked by and knocked them off with his tail then he is non the wiser, he does make me laugh and has the most cutest face ever so I cannot be cross with him for long.

The sun is deciding to go and hide so I need to get Poppy back in, she scratched me to bits today when I was trying to catch her to put her out into her run, I wish she would realise that I am not going to hurt her but was making her have a nicer day by going outside to run and jump about, I must try and handle her more.  I leave you all with my special little friend who turned up last week, Aleksandr Orlov!

All my love,

Shellie B xxx

Riding out the waves..............of nausia

Gosh I cannot believe how naughty I have been again and not blogged for ages, tbh I have not really felt in the mood to whinge about how I am feeling but have decided its not whingeing, its sharing!

So I have followed Professor Grossman's advice and weaned myself off of my venlafaxine, I did this by reducing 1 tablet each week over 3 weeks, um heeerllloooooooooooo could you not have pre-warned me about the side effects of doing this and the possibility I would be rushed to a&e as a result.

I took my last tablet last Wednesday in the morning, the pain in my joints was getting worse and I only managed 1 day last week at NANNA Animal Rescue, then Friday I could not get out of bed, let alone stay awake, I woke up Saturday morning feeling even worse, hence the visit to my local a&e department.

After trying to explain my Von Hippel Lindau and where the 6 tumours are that I currently have and then the whole story regarding the Pheo, they just looked at me completely baffled.  The doctor who assessed me in a&e was fantastic and overruled everyone by keeping me in overnight.  I had a CT and they couldn't find my brain tumour which I took as good news as this means it had not grown, it was found at just 4mm, they seemed more fascinated about the shape of my skull and the scarring to my brain from my first surgery to remove a brain tumour in July 1998.  In fact they all seemed quite intrigued about the oddball they had in a&e, I didn't care as I had a trolley to lay on and drifted in and out of sleep.

The next morning I was asked to do another urine sample and was then told off as I never bought it back from the toilet, firstly they were lucky I made it to the toilet without collapsing and secondly if they wanted me to spill urine all over the floor I would have just peed by my bed!  Next came the ward round with I can only assume a consultant and a junior doctor, the junior doctor I had asked the previous night if I could have some pain relief and never saw her again.  We went over my results, bp was ok, scan was ok, bloods were ok but query on the urine sample, so they were trying to say I had a urine infection, REALLY!!!!  When I tried to emphasise that something really was not right with me I was told "Miss Batchelor it's about time you learnt to live with it", as you can imagine I was fuming, I got myself dressed and then stood by the nurses station until they removed the needle in my hand and then discharged myself, I got a taxi home as I knew I would not make it walking.

Now I am not a doctor but I KNOW the way I am feeling is withdrawal from Venlafaxine, I even kept saying this on the phone to emergency doctors, ambulance crew and a&e staff.  I called my GP Monday and she agreed with me, I have some anti sickness medication and painkillers.  She checked the results posted from my weekends experience and I DO NOT have a urinary infection which is what they were trying to put it down to, my white blood cells are slightly raised so I could have a virus on top of it all.  Even though I still feel absolutely awful, I am going to continue not taking the Venlafaxine as I do not want to let Professor Grossman down as he is working very hard to help me.

Some of the side effects from Venlafaxine withdrawal:

Signs of Flu

One of the common Venlafaxine withdrawal symptoms is the set of flu symptoms such as cough, headache, fever, muscle ache, and body pain. Once you stop using the drug abruptly, these signs tend might take place in some days and can remain for up to more than a month’s time. The reliving news here is that these signs are mild, which are alleviated with time if you lessen the drug usage in the correct manner.

Adverse Effects on the Brain

Stopping the use of Venlafaxine abruptly increases the chances of many bad reactions in the brain. Due to this, you might experience fatigue, dizziness, impaired coordination, tremors, headache, strange sensory feelings, sleeping difficulty, drowsiness, and nightmares. Even worse is the fact that these signs can be moderate to severe, which can later affect your ability to deal with the daily activities. In case you experience these symptoms, it is advisable for you to be vigilant while performing the usual daily tasks such as cooking, driving, and other concentration related activities.

Unfavourable Effects on the Gastrointestinal Tract

You might experience symptoms such as vomiting, nausea, diarrhoea, dry mouth, and loss of appetite after Venlafaxine withdrawal.

Unpleasant Behavioural Changes

A sudden change that is not normal affects your behaviour with others. There are many adverse effects on your usual behaviour that tend to spoil your relationships. Portraying anxiety, agitation, nervousness, bad mood, confusion, and irritation are all the possible symptoms of Venlafaxine withdrawal. In case you used to take a big dose for a long time, these symptoms show off with an increased frequency. In this case, the patient is again put on the previous dose that is reduced gradually henceforth.

Depression and Suicide

This symptom reverses the very aim of the drug. In patients with worsening depression featuring suicidal trials, even lowering the dose is done with great care. Therefore, you can imagine what can happen if you stop taking the dose all of a sudden. In such cases, the patients need very close supervision.

Other Signs
- Burning or tingling sensation
- Insomnia
- Feeling of ants crawling on your skin
- Frequently changing emotions

Reading some of these symptoms is like reading how the drug made me feel when I was on it too, I sincerely hope that this will help me become non-dependent on anti depressants, which I have been on since losing my beloved mummy on 29th November 1997 and possibly even before then. 

I do not ask much, I just want to start living my life, have some of my energy back, find my smile and keep making my mum proud as that is not one Guardian Angel that I want to upset.............

Shellie B xxx

Back to square one!

Wow I cannot believe how long it has been since I last blogged, so much has gone on and I just have not found the will or words to put how I feel.

I got made redundant on the 31st December 2011 from the job that I absolutely loved, my health went downhill and I had to have various visits to the hospital and was put on extra drugs called Alpha Blockers, which are supposed to block the hormones the active pheo is secreting.  I did not work my last month as I was too stressed and both emotionally and physically exhausted, if my health had not gone downhill would I still have my job?

Once again I put my trust in alledged friends and once again I got badly burnt, Christmas was just non existant and I did not even put up any decorations, I took another overdose on the 2nd December, it was my last day at work and I felt I could handle a drink but I couldnt, hence the overdose.  My wonderful friend Andy came and spent New Years Eve with me and we had an evening of snacking and playing on the wii.

In the New Year I got involved with a search for 2 greyhounds that had been seen chucked from the back of a van and tied together, one only had 3 legs.  We never found the dogs and it is all very suspicious of what went on but I did however meet some really wonderful people and have now become involved in an animal rescue centre called NANNA.  I am on the committee and help out on site when I can and will also be responsible for the cats on the website and on the facebook page.

I have stroked a fox called Pancake who greets you with a wagging tail and making a funny but happy noise, such a beautiful animal but too tame to survive in the wild so will stay at NANNA's.  They also have sheep, horses, donkey, pigs, goats, geese, chickens, turkeys, dogs, cats, kittens, rabbits, ferrets, guinea pigs, ducks and a few more lovely animals.  I love going there to help out but after a couple of days, my energy levels crash and I have to have a couple of days rest.

My lodger announced he was leaving on Monday, no notice and owed 1 months rent money, as I am not working this has left me in a very difficult predicament and means that I cannot afford to get to NANNA's to help the animals and so my days seem worthless again, I struggle to get up or look after myself, if it was not for the cats and Poppy then I probably would not get up at all.

I should hear this week if the hospital are going to operate or not, I have asked them too as I cannot function how I am at the moment and due to my quality of life being affected I do not see why they will not do something, thing is I do not have much fight in me to keep on at them but will keep trying.

I am going to try and start my crochet again because even if I cannot get to help the animals by feeding and cleaning them out then at least I can help by making some blankets for them to keep them snuggly and warm.

Shellie B

Exhausted and waiting for answers

As I have not been sleeping very well and am on quite a cocktail of drugs at the moment, Viepax 3 x 75mg a day, Diazepam 3 x 2mg a day, Co-Codomal 500mg lots of times a day and then there is Zopiclone 7.5mg to be taken at night.  I have been too reluctant to take the Zopiclone during a "school" night so took one last might, well I am still trying to come round and feel lousy, so I definately will not be taking them during the week, I have a headache but I am too scared to take a Co-Codomal as that might completely knock me out on top of everything else.

Currently I am waiting on a phone call from either Consultant at the Churchill or John Radcliffe in Oxford to let me know the resuls of the urine samples I did last weekend.  If they are high I will then probably just have a day/half days notice to advise me that I have to go into hospital to be put onto some medication to control my blood pressure and counter-act the adrenal that is being released from the tumor/s on my adrenal gland/s.  I thought I would be put on this medicaton to take at home but apparently it can be quite dangerous as it could make me collapse etc.  Once they get the medication right I will then be advised of the date for the surgery, they anticipate that I would be on the medication for 6 weeks, so we are looking at November.  They have told me it would be an emergency operation due to the fact I could end up with Heart Damage or even a Bleed to the Brain.

Am I scared, gosh I dont know what I am at the moment.  All I know is that none of my tumors have ever given me symptoms before, not even my brain tumor that I had removed 13 years ago but since that operation I have never felt well and sometimes wish I had not had it done.  I am hoping the opposite to this one and hope that I come out from it all feeling so much better and can maybe finally reduce my anti depressant medication and my old self will re-emerge.

These tumors in the Adrenal glands are very nasty things, they are not huge, right one 7mm, left one 1.7mm, but to now see what effect these are having on me mentally is amazing, they are driving me insane.  I go from being my normal funny, wacky and best friend you could ever wish for to a complete gloomy, moody, miserable, attention seeking freak!  One minute I can be coping all ok and then the next minute I have to run into a quiet room at work and sit and cry for 20 minutes, rining round my VHL clinic for support as I get so overwhelmed and just cannot understand/cope with what is going on, the frightening thing is that is makes me completely out of control, the urge to demolish rooms in the house or scream at work is scary.

As I didnt get the results on Friday then I should get them on Monday.  I have my new PJ's ready and new knickers, my Mummy bear holding a baby teddy will be coming with me as I bought that one mothers day after losing mum and she does give me comfort, I can image my mummy teddy will have lots of cuddles over the next couple of months..

I finish this blog off in tears as I do not know what the next week will hold for me, if the results come back ok what will the next step be as I KNOW there is something seriously wrong with me mentally & Physically and it is NOT my depression as I have had this for years but never any like this.

I hope you all have a peaceful Sunday and if you have family, pick up the phone and tell them how much you love them, resolve any silly family arguements as you only get one family and when they are gone a huge gap appears in your life that you never realised would exist and you can never get that back.

Take care my beautiful friends,

Shellie B xxxx

Pheochromocytomas - what are they and what affect do they have on people?

Those that have known me for a long time will have seen a change in my behaviour from when I was off ill last year, we all put this down to me having to change my medication and then struggling to find the right ones to work for me, even my doctor has got frustrated as I have continously told her that the tablets are not working.

After talking to other VHL sufferers, I now have a better understanding of what is happening with me mentally and why, so I thought what better way to try and explain it to those who have never heard of VHL or understand what tumors in certain parts of your body can do or change a person.

There is a website out there in the tinternet called VHL Family Alliance and they have just carried out a survey on this particular type of tumor, the write up is very spooky as so much of it rings true with me, the next few paragraphs are extracts from the report and detail exactly what I have and am experiencing.

Delayed Diagnosis Hurts:
During the time people were waiting for their diagnosis, people reported many serious issues. First, of course, their symptoms worsened, making it difficult to concentrate, undermining their energy and stamina. As the tumors grew, serious emotional fragility developed, sometimes resulting in explosive temper which caused problems at work and in relationships. Even worse, the fact that their doctors did not believe they were sick, or accused them of using drugs, or of hypochondria or other psychiatric disorders had a severe impact on their feelings of self-worth and frequently led to feelings of helplessness and hopelessness. Many said they felt they had lost control of their lives. People with such advanced tumors often had some of the symptoms even after the tumor was removed.

No one believed I was sick:
As people read our checklist of symptoms that might occur, several were surprised to realize they could be indicative of a pheo. Some said they were embarrassed to discuss some of these symptoms with their doctor, not thinking they were related: heavy sweating, constipation or chronic diarrhea, nervous tremors or tics, anxiety or feelings of doom. Dizziness, fatigue, and headaches were usually reported.

Heart Disease:
The chemicals generated by the pheo may cause the heart to race, the blood pressure to become erratic, nervous tics, and/or moderate to severe headaches, all of which might raise concerns of a heart attack or stroke

Psychological Issues:
When patients report anxiety, panic attacks, feelings of doom, fatigue, sometimes alternating with spurts of boundless energy, and mood swings for no good reason, it is logical to think this person is under stress at home, work or school, or has some more serious psychological issue going on. Many people were referred for psychiatric counseling and/or prescribed drugs.

Comments:

• Severe emotional trauma within the family unit by constant disregard by health professionals and being made to feel like idiots when clearly something serious was occurring.
• The first pheo took 3 years to find. I thought I had major psychiatric issues during that time.
• If the doctors tell you often enough that you’re crazy, you begin to believe it. Certainly my wife believed them and left with the kids.
• I found it difficult to control my anger when my adrenaline spiked (recognized it after diagnosis)
• Anxiety so bad that at one time I was suicidal and even self-medicated with alcohol and felt better when I did this. As soon as I got sober, the issues came back.

I recognise so much from those paragraphs above and even more from the comments some of the people on the Survey made and even though I am really scared, I am also really relieved that I do have something growing inside me that is causing all these issues and it can be taken away from me.

I have two hospital appointments to go to over the next couple of weeks, 29th Sept and 3rd Oct, hopefully by then I will have answers and a plan of action on how we are going to tackle this and make me better, my GP is still not convinced these Pheos are active but I know my mind and body better than anyone else and I know something is not right and hasn't been for ages.

During this time I have also lost and upset some very dear friends because I could not control my emotions, temper or anxiety, I just wish I had known there was a reason behind it as I might have been able to explain to them better why I was being so unreasonable.

I still live in hope,
Shellie B

If you want to read the full survey it can be found here.

MOT for 5th Sept 2011

Well I decided that as I have not attended clinic since 2008 that I had better go this year and I also wanted to meet the new clinical nurse for genetics, I even made a huge effort and did my 24hr urine sample.

Unfortunately Angel went missing on the Saturday before I was due to go to the clinic so I really didnt want to go but good friends told me that I still need to take care of myself, so I headed off and when I had got halfway to Oxford I realised I had left my 24hr urine sample at home!

It took them about 10 minutes to be able to find a good enough vein in my arm to be able to inject the dye, once the MRI was over I headed to outpatients to see the Genetics Doctor and then the eye specialist.  Dr Halliday did not seem too worried about things and informed me they were having a meeting about the scans on Thursday, 8th Sept and that they would write to me with the results in about 2-3 weeks time.  My eyes were all ok but they want to take a photograph of my left eye which is the one I had the problems with earlier this year.

So I headed off home, all anxious, as I just wanted to go searching for Angel.  Thursday came round pretty quickly and I was in London attending all day meetings, so it wasnt until I was on the train back home that I saw I had three missed calls with messages, they were from the hospital, my heart sank as they have never called me about my results before, I also had a missed call from my GP, wow I was popular!

So my VHL has decided its been a bit neglected and wants some attention, its very kindly given me some extra tumors to think about, 1 in my pancreas and 1 on each adrenal gland.  I am not very sure what this means but all I know is that I have to do a further two 24 hr urine samples and am being referred to two different consultants.

In a way I am very relieved as I have not been feeling well for a while and started to feel like I was just becoming a lazy old lady, who just moaned about being stressed and down all the time, with no willpower but now I know I have these extra lumps, it could be them that are making me feel how I am.

All there is left for me to do now is play the waiting game and see what happens next.......

Shellie B xxx

Tribunal Decision

Well the day finally came, my stress levels had gone out the roof again and I drove to the Benefits Tribunal feeling sick, shaking and wanting a big hole to swallow me up and take me to somewhere peaceful, full of love and where you dont get judged.

I sat outside nervously waiting for them to come and get me, they had tried to call me in the morning so I was even more anxious but as soon as I walked in they told me that the Department were wrong in their decision and they believed that I was entitled to Employment and Support Allowance (ESA), that was why they had tried to call.  They had rescored me 18 points instead of the zero the useless doctor who I had to see awarded me at the medical, you have to score at least 15 to be entitled to this benefit.

I am so glad I stayed strong and fought this to the end, imagine those that just give up and dont want the hassle, what a huge waste of stress it has caused, let a lone the cost to them for taking it this far, below is the revised score they gave me:

• 2 (e) Cannot stand for more than 30 minutes, even if free to move around, before needing to sit down = 6 points
• 3 (c) Cannot bend, kneel or squat, as if to pick up a light object off the floor and straighten up again without the help of another person = 6 points
• 16 (d) Cannot, due to cognitive impairment or a severe disorder of mood or behaviour, initiate or sustain personal action without requiring frequent verbal prompting given by another person in the claimant's presence = 6 points

So Dr Michael Kamburov (Approved Disability Analyst) who scored me zero after my medical exam but was more interested in getting home as it was carried out on a Sunday and who I could not even understand half the time and Sarah Mitchell in the Jobcentre Plus who reviewed my appeal, I think you need further job training or maybe a change of career, how many other people have you put through this meaningless act just for it to be overturned, mine was overturned without them even questioning me or even before they saw me.

So this means I dont have to pay any of my benefits back and I can continue looking forward to the future instead of trying to sort out the past, thank you to all my lovely friends who have supported me and helped me get through this, you have all been and are so crucial in my recovery.

Shellie B xxx