Pheochromocytoma and Kidney Tumor Post Op Blog

Well I've done it again and not blogged for ages, mainly because I have just felt too ill to be able to sit at the computer to try and put how I am feeling into words and explain everything that is going on, its been an awful few months since I last blogged but there is finally light at the end of that very long tunnel.

After 2 postponements for surgery, I finally went into The Churchill at Oxford on the 9th April and had surgery on 12th April.  I saw both Mr Sullivan, renal surgeon and Mr Mihai, adrenal surgeon during the 3 days I was admitted before surgery and they explained what would happen, as I was having a double operation they could not be able to do this keyhole but it would be open surgery and just be a small wound on my left side, more about this wound later! I woke up on the morning of surgery very apprehensive, I was last on the surgical list due to my operation being very tricky and as it got nearer to the time I was due to go down the more I felt that I could not go through with it.  I was alone and very scared, I just needed someone there to sit with me and hold my hand to let me know it was all going to be ok......

They wheeled me into the anesthetic room, one of my favourite nurses from the ward, Alice, came down with me which was just aswell as no one could tell me if I should keep my knickers or not so I kept them on, well they had to come off and I also had to take my belly bar out, not very easy when laying flat, they asked if I wanted to sit up to be able to take it out but I told them that if I did that then my belly button would disappear!  They then started getting busy but I had to go through my ID with them first and I couldn't speak as I was choking back the tears, Alice told them I was very scared, they all reassured me and helped me have the courage to continue.

The anesthetist explained that I would have an epidural but in order for them to put that in, they would have to send me off to sleep and then wake me up again to make sure its in place.  Last thing I remember is turning onto my side so they could start, I woke up with an oxygen mask on and a very nice male nurse at my side telling me well done and it was all over, I was very confused and thought he meant the epidural was in but he actually meant the whole operation was done.  The more conscious I became it was apparent some things were not right, I could not feel my legs and I could not move both of them, the left leg was worse than the right one, I already have nerve damage in my right thigh so that wasn't too much of a surprise, then all of a sudden it felt like someone had stabbed me in my left shoulder, I have never felt pain like it, well not at this stage anyway.

They took my arm and started moving it around, I was crying in pain but it eventually wore off and I was extremely grateful, they said this was because my arm had been secured above my head for the duration of the operation, approx 6hrs.  I still had the problem with my legs, it later appeared that the epidural was the problem so they did not seem too concerned.  I was told the operation went really well and that instead of taking the 2 tumors from my kidney they removed 7, I was in even more shock!  I had been in theatre and then recovery for 10 hours, it had felt like minutes for me!  The nurses greeted me back on the ward and got me comfy, they did something called a block test, which is basically putting ice cubes on different parts of my body so see if I could feel anything, my left leg had no feeling still and my left side and my tummy.  They then told me they had to remove the dressing as the air needed to get to my wound, what they uncovered completely horrified me and I was scared to move as I had been glued back together!  They left me armed with my morphine and nurse button.

After a sleepless night of being woken for obs and doing the block test they told me  then I had to get out of bed, I thought they were joking and was petrified the glue was going to come undone that was holding me together and also I could not stand up as my left leg still had no feeling so I couldn't put any weight on it, we also had to negotiate the drain that was in my left side and the catheter.  I felt awful and regretted having the operation so much, was the pain really worth it and now I was faced with a lengthy recovery and know that one day I will have the same double operation again but on my right side as I have a mass on my right adrenal and kidney.

I had things coming out of me everywhere, I had a central line in which was quite handy as there were 3 attachments that could be connected to it, made things alot easier for the nurses.  Physio came to see me once the epidural was lowered and my morphine increased as this gave me back the feeling in my left leg, it was time to get me walking about which was sheer hell and I also had a few things still attached to me so that made it more difficult.

A week after the operation there was talk of me going home, I was shocked as I did not feel ready, I could not even get in and out of bed without using the bed control that would sit me up, I would not have this at home so how would I cope?  They took the drain, catheter and central line out all in preparation of me going, I was also still on oxygen, so again I was surprised they thought I was ready.  On Saturday I had a lovely new nurse I had not seen before look after me, she contacted Mr Mihai as she was worried about my breathing and I was sent for a chest x-ray which showed some fluid had built up around my left lung.  I was told coughing, walking and taking deep breathes would clear it, I was also put on very strong anti-biotics.  Coughing and taking deep breathes is virtually impossible when you have practically been cut in half, luckily I had made friends with a lovely lady on the ward and so we would go for walks together, when she had visitors I would go on my own, I would walk a bit out of the ward and did not realise one of the consultants had seen me until they mentioned how pleased they were with how hard I was trying to get back on my feet.

On Tuesday 23rd April I was discharged from hospital and left the ward staff a lovely box of chocolates as a thank you for all they had done for me.  Hilda gave me one last shower before I went, she was also a great help in my recovery and gave me my first shower after my operation, which I believe was the turning point for me getting my confidence back and make me realise that I could get over this.  My wonderful friend Sammii came to pick me up, Sammii had also bought me in, Lorna had been house-sitting and looking after the cats for me and my amazing friend Beki came and stayed with me for nearly two weeks once I was back at home to care for me, they all did an amazing job and I will be forever be grateful for all they have done for me and still are. 

I'm slowly getting better but keep over doing things as I feel ok and keep going then bang, I'm in agony and also for the next day afterwards.  I still cant feel my tummy but that's probably a good thing as it means my wound does not hurt, I am due to have another chest x-ray in a couple of weeks to make sure all the fluid has gone from around my left lung.  Below is a picture of my war wound 18 days after surgery

I would like to thank everyone for all your support and well wishes before and after surgery, thank you Donna for my lovely flowers, Twinny and Sissy for my card and bear and Lorna and Beki for my card and guardian angel pin.

Shellie B

Are we nearly there yet?

Not blogged since May, gosh thats a long time, as I have just not felt well enough to sit at a computer and blurt out how I am feeling, I also wasnt sure people would want to hear how I am feeling, as I know I am getting fed up of it all now, so hence the title of this post as I feel its been the longest journey ever but I must nearly be there, fingers crossed.

So what's been happening since May, well two of my closest friends turned out not to be friends at all but con artists, so now I am having to file a claim with the small claims court to get my money back that I foolishly leant to them after listening to their sob stories about this and that, god will I ever learn?  Probably not! I also lost my beautiful Chino to an aggressive tumour on 18th June, I tried my hardest to control his pain but it was too much for him, it broke my heart as I only had the honour of having him for 1 year but we had a very special time together and I grew to love him as much as my other cats.

Chino Bambino RIP

Healthwise is not great, adrenal and kidney tumours are growing on each 6 month MRI scan, MRI of my head shows I have another 3 brain tumours, all very small and non cystic so thats not so bad.  I am rapidly losing my patience with Professor Grossman as everytime I go he says they have forgotten to test my thyroid and that I am pre-menopausal and that is why I am so ill, sorry but thats all poppy cock as I know its the Pheocrytoma (adrenal tumour)!  However, my VHL team referred me to the urology department to discuss the 2 tumours on my left kidney and I met Mr Sullivan, lovely man who knew about my mum's case and has agreed that I need those tumours removed now and has been in contact with Mr Mihai (adrenal surgeon), who has also agreed I need an operation and as they are all left side they are going to do the two operations in one go, I am now waiting for Professor Grossman to confirm that I have been blocked sufficiently for this to be booked in, they are anticipating this will happen before xmas..........I'm not celebrating until I actually get the date of surgery, as last year Professor Grossman put a halt to any surgery.  I am due to see him 28th November, so next Wednesday, please all keep everything crossed.

Even though the last few months have been filled with sadness and uncertaintanty, we have had a new arrival to add to the feline family, her name is Lilith and she came from a very dear friend of mine, Sammii Patching.  I met Sammii as she was distraught that her beautiful ragdoll cat called Lola went missing in November last year, I helped her leaflet some of the village in an attempt to find her.  Lola left behind a litter of kittens, Sammii kept a female and called her Misty, well Misty had her own family and I fell in love with the naughtiest one of the litter.  I waited with so much excitement until she was old enough to leave her mum and now she is well and truly established with all of my other cats, she is completely bonkers and has me in stitches of laughter, even on my worst days.  I named her Lilith, those fellow Trueblood fans out there will know why if you watch Season 7, her name does become Lily Bills sometimes which is even more apt for the last episode of Season 7!  

Lilith

Merlin

I have also added a picture of Merlin as I cannot remember if I have mentioned him in any of my previous posts, I rescued him from a rehoming page on facebook as I learnt that he was deaf.  He came to us shortly before we lost our beloved Chino and settled in after a bit of hard work and patience but now he is great friends with Lilith and I quite often catch them sharing a moment snuggled up on the cat radiator bed which makes a change from her normally hanging off his tail or pouncing on his head!

I shall try and post more regularly to my blog until then I now have to try and keep my head together until next Wednesday when I meet with Professor Grossman again, I have a feeling its going to be a long week!

Shellie B x

Merry-go-round in May.............still

So I went to see Professor Grossman, who appeared to be in more of a hurry to get me out of the office as soon as I sat down..............long and short of it is "we still do not know why you are so poorly, we forgot to test for your thyroid so we will take more blood and see you in July, oh and you should also be seeing a kidney specialist!".

Not the answers I was looking for but he did prescribe me 3 months of the correct tablets, only to find out when I got home it was the wrong dosage and also the normal pills that I am already taking.  Fortunately my normal GP is off sick for 3 months so the fossil of a doctor I saw obviously decided I was in a right old state, as I sat there shaking and crying my eyes out, and prescribed me the tablets I should be on, even though the PCT has still not got round to approving them, bonus!!!!

Not much else has been happening, I am still a prisoner in my own home as I cannot be nice to people so its safer for everyone if I stay at home.  I know lots of people say you control your mood etc but I have just come off anti depressants after being on them for over 10 years, I do not have a job, I have no money, I am really fat and find it painful to move about..........so yes I am sorry I get very agitated, frustrated and depressed.

Enough of all that, today I am off to Preston as, everything crossed, Peter's operation will go ahead tomorrow, on my way to Preston I am meeting two lovely ladies for the first time, who are very special to me, my twinny Chelle and her sister Sam.  Am feeling very nervous as I am not good around people at the moment but they are so lovely so I am sure it will be ok, god I feel like crying just thinking about it.

I have also finished the baby blanket for Wendy Johnson, well ahead of schedule so thats good as I dont think a 16 year old would appreciate it as a present, the pattern is called Mayflower, I think I may even have enough wool left over to make a teddy in the same colours

Short blog this time but its more of an update as I am due to head off on my journey, will leave you a picture of my beautiful Tiffany chilling in sunpuddles =^..^=

Shellie B x

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