How did I get on at The Christie?

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For those that didn’t know yesterday was my first appointment at The Christie with The Professor and his lovely colleagues within the Endocrine unit.

On arrival at the hospital (went with sister, mum, dad and girlfriend) i was initially struck by the number of poorly patients and secondly by the smile on most if not all the staff, nurses and doctors.

If im honest, for the first 30mins I had a very strange feeling in my stomach and i had no desire to chat with my comrades who had so merrily come to support me. Suppose it was the realisation that i had a serious problem that would probably impact on the rest of my life.

Saying that i wasn’t feeling sorry fo myself. Just that i needed to look at everything around me, say nothing and take it all in. I am like that and probably nothing unusual as im always the first to look for the emergency exits :)

As i was an hour early for my appointment (typical for me) so we ventured into the cafe and like the usual rock that she is Amy (my girlfriend) treated us all to a coffee. Not that she intended to but more that my Dad complained that he hadn’t brought any money out. Despite my sheer annoyance that the head of the family had failed miserably at this early stage i was glad that he had come.

This was the first and only time from leaving hospital as a baby that my dad has ever been to a doctor’s appointment, dentists, parents evening, sports day, school or significant life event. Yes i am sad this it took this to prompt him but I remain ever so aware that lots of people don’t have their parents around –  I do and for that i am both lucky and thankful.

Anyway, i think that we brought some fun (possibly a nuisance) to the cafe as we all took turns in ripping my dad about his new-found love life. Mum did her best about not bringing up the past and their divorce some 24yrs earlier. All in all the usual banter!

Shortly after my sister arrived who was visiting her friend Neil Whitworth who has recently been re-diagnosed with Cancer and was in for chemo. If you are into football you may know that Neil once played for Manchester United!!! He’s really been around but was plagued with injuries. Rach says that he’s a cracking chappie and I I really hope that his treatment is a success. I will of course follow his progress and we all wish him well.

My appointment with Prof T was at 3pm and shortly after we all tramped upstairs to department 63 the Endocrine unit. On arriving at the unit I was struck by how clean and new the department looked. I checked in and a less than 5 minutes later a smartly dressed gent with red socks called me down. This was Professor T.

“Prof” as he is known, is a charming Scottish gent and within a few minutes of going into his treatment room we were at ease. He was accompanied by one of his Registrar’s Dr N whom was also very friendly. Prof has a great manner about him and albeit formal he communicated really well and let me speak freely about my concerns. I mention this as i probably rambled on far too much :)

Initially Prof went through my medical history (including that of family) and the timeline that got me to him. The symptoms that got me to the GP were poor concentration, lack of energy, tiredness, fuzzy or a heavy head, nipple discharge and prognathism of the jaw.  I mentioned everything and also my blood test results of high prolactin and low testosterone. I also mentioned my sweating and instances of SVT 5 years ago which required hospital treatment with a drug called Adenosine. Interestingly since 2007 I hadn’t had any more episodes of SVT which i now know may have signalled my current condition.

To anyone going to these initial appointments I would definitely prepare all your information and questions before your appointment as my mum kept having to prompt me. If possible also take someone who really knows you and take notes too!

We discussed the initial investigations done by my GP and Dr T the endocrinologist at RAEI in Wigan and he confirmed that they had done the right things and that my symptoms were that of someone with a pituitary tumour and acromegaly.

He said that the huge problem with my condition is that is sneaks up on people and that the typical diagnosis period is 8-10 years when the penny finally drops that there is an issue. He made it absolutely clear that we are now starting to move in the right direction and that my condition is  treatable. He went onto say that there are lots of things for him and his team to follow-up on such as accessing my MRI and the recent oral glucose tolerance test.

I should say that i was really disappointed that he hadn’t as yet seen the MRI and he was relying on the radiologists report in the file which I felt differed from the scan that I had seen and Dr T’s initial assessment. Suppose it was just a timing issue but all the same he had the report to guide him and read it out.

Next he went on to explain that my recent blood tests had shown my IGF1 result was impressively high at five times the upper limit for my age at 151 and that my prolactin was modestly high. He explained that my symptoms, the MRI and the blood results all pointed to acromegaly.

My mum asked about when these things may have started and Prof said that the long bones in the body fused during puberty and this in boys is 15-17 and that I will probably have kept growing. He said that my size and symptoms were classic acromegaly. He explained that the danger with acromegaly is the damage it causes to joints as the body carries extra weight.

I particularly liked his simple explanation of my pituitary gland/tumour:

  • it produces too much growth hormone
  • it squashes the healthy pituitary gland
  • it damages healthy tissue around the gland

Then he went on to say that short-term he and his team would look at the MRI images then consider the options for treatment and surgery. He said it’s highly likely that I will end up in front of the Surgeon at Salford Hope, Mr G, who he says is excellent and that it’s just a matter of timing. Short term he would consider a drug called Cabergoline that is commonly used to treat Prolactinoma. Apparently this and other drugs are also used to shrink the tumour prior to surgery and that tumour size is very important when considering surgery

Then Nurse M was introduced as the leading acromegaly nurse at the hospital and again she was really lovely giving me some comfort with over 10 years knowledge on my condition. She even gave a business card with her direct number on too. This last act alone gave me massive reassurance that I was in the right place so thanks Nurse M.

After this they passed me over to Dr N who went through my medical history confirming all details and then she examined me.

This examination included checking my abdomen, my heart, breathing, under arms and lastly measuring my testicles with what i would call a ball bead necklace :) It’s actually called an orchidometer! Rather funny but embarrassing all the same and im not telling what my measurements were but safe to say that one is bigger then the other :)

Shortly after i went through to have some additional blood tests by a nice lady across the corridor who then passed me down to another nice lady who carried out a visual field test.

This visual test involved looking into a machine. The machine gives out random points of light. All you have to do is press a button when you see a point of light. You may have an area in your peripheral vision where you don’t see the lights. The machine makes a slight sound as it makes the light so it will be tempting to press the button even if you are not sure you saw the actually light. Don’t cheat! I passed the test and didn’t have any issues with my sight.

After this I went back in to see the Registrar Dr N who said that they would now get all my records (which I had hoped they already had) and get me back in three weeks time to inform me on how they would like to proceed. Again really nice and put me at ease.

On leaving the hospital i spent the whole journey filling my gang in and admittedly I moaned that three weeks was a long time to wait for an action plan but I would later regret saying that and I apologise in advance :)

On arriving home we took the fabulous advice from master blogger Trystan and we all went for a slap up meal at Miller and Carter on top of Parbold Hill in Lancashire. I ditched the car and had the best T bone steak ever and more than a few glasses of red. Must say thanks to Trystan as the treat worked and I cant wait for my next appointment!

 

Now bringing you up to speed this appointment had been at 3pm on Tuesday 3rd July 2012. The next day at about 4pm, I received a call from the Registrar Dr. N who works under Prof to say that since yesterday they had viewed my MRI results and that they were referring me straight to Salford Hope for surgery with Mr G to remove the tumour. She said that she would write to me shortly confirming the situation and next steps.

So the headline is that I will be having surgery and sharpish!

I am really happy that this has moved so quickly and I must thank Prof’s team for their help. Other people will have no-doubt had to undergo years of treatment. I both respect and appreciate what these people will have gone through.

 

8 Comments

    • Absolutely did mate. It was literally the first thing I asked and dr Nisha burst into laughter. Prof hitched up his pants and said you’ve been reading the blogs.

  1. Hi Richard, Thanks for your response to my comment on Trystan’s blog. I have just found your blog and am interested in following your journey. So glad they have scheduled your surgery! My son had his surgery March 2011 and it was really smooth, very little pain, just a little nasal stuffiness and runny nose. The hardest part was they told him not to bend over or lift anything over 10 lbs. for weeks! Very hard to not bend over because you do it without thinking. He just spent one night in the hospital for observation and it was smooth sailing except for the nervousness before ( he had never had surgery before). I saw your photos and they look very similar to my son’s photos, many people have commented on how mature he looks for his age but most do not notice the facial changes. Within days of his surgery his fingers started shrinking and nose and thickness of his skin looked different. So glad you have caught this now. How old are you if you don’t mind me asking, my son is 28. Wishing you the best for your surgery and speedy recovery! Christine in California
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    • Thanks for your comment Christine in California :) I’m 34 years old. It was really interesting to hear about your sons experiences. Can i ask how your son is now? Like yourself my mum has been really troubled by this whole situation and albeit we have started the journey I cant help but think that mum’s taking this harder than I am. Take care and speak soon. Regards, Richard

  2. Will be thinking of you and your upcoming surgery. I had surgery in 2005, know that there is life after surgery and it’s the beginning of getting better. No doubt in my mind, I would not be here today without proper diagnosis. I too was misdiagnosed almost to the point of dying. I look at it as making me oh so much more grateful for the life I do have now. Anyway, I’ll be sending you healing thoughts and prayers. Best wishes!

    • Thanks so much for getting in touch Jill. I really appreciate your sentiments and hope that your are well. Things are going great so far and moving along nicely. Just waiting on the call from Christies with a date for the operation. I will keep you up to date :)