Within a week of my discharge from Arrowe Park Hospital, Andy, known for his determination to drive things along had called the hospital appointments team. They were polite, aware of my case but said the appointment couldn't be made until the Consultant had reviewed my file. He asked what sort of time line this would comprise, difficult question for them really but he asked what was the absolute outside dates they were currently making bookings to, the response was "Up to 12 weeks". Andy knew it wouldn't be that long and he knew this team couldn't move an appointment along so he politely thanked them for their time.
It took Andy about 10 minutes to do some research and to call the hospital back asking for the Consultant's Secretary, at this point if necessary and you may find this right or wrong but Andy was prepared for us to pay for a private consultation if necessary (In the end it wasn't), I'm absolutely no good at this sort of thing so leave it all to Andy really, I'm truly grateful I've got this 'rock' beside me. The upshot was my Consultant was off for a few days but she'd discuss it with him on his return after the weekend.
Monday 22nd July 2013, just after nine a.m. Andy called the secretary of Mr Farah, my Consultant Neurosurgeon for an update, the conversation went like this. "I'd put Julie's notes on Mr Farah's desk for him, he's just left for surgery and as he walked out he handed me Julie's notes and said I need to speak to you about Julie later, as soon as I've spoken with him Andrew, I'll call you back". Around four p.m. Andy received a call, "Mr Farah would like you to bring Julie in for a consultation tomorrow morning, be here for nine a.m. explain you don't have a fixed appointment, the team will be aware and Mr Farah will see you as soon as he can".. Wow impressive but also scary, why the urgency?
Tuesday 23rd, we duly arrived in time and checked in. We waited around 40 minutes before we were called in to see Mr Farah. Conversation went like this.
Dr F: You've been referred to me by Arrowe Park, tell me what you know.
Andy: Well Julie has had several seizure like episodes resulting in several hospital admissions during this period scans have taken place, the team at 'AP' could see a mass but were of the view the scan wasn't clear enough to distinguish if the tumour was in the meninges membrane or actually on the brain"
Dr F: It's on the brain, it's clear, it's on the brain.
(Andy interrupting: If one thing has become clear to me in the dealings we've had and are yet to share with you it is that Hospital Doctors and Consultants, unless it's in their field of excellence/experience won't want to deal with or discuss the subject. In this instance Mr Farah was instantly adamant and correct, this thing was on Julie's brain, the Stroke Team would have know this too. It may be right it may be wrong I'll leave you to decide if in this instance and others to come if this apparent 'policy' is right or not)...
Andy: Ok, how large is it and what happens next?
Dr F: Let me measure it (By now we were looking at 'fluff' in my head on the screen before us) - It's just over a centimetre in size. As for what we do next, well in my eyes you have three options.
- We do nothing, but honestly I do not recommend this.
- I can have you in and we can do a biopsy and establish if its malignant or none malignant
- I can have you in for surgery, we can take a biopsy and get the results whilst in theatre and then remove it if its malignant but if we are at this stage truthfully as it has to come out, I'd suggest we just do that. I need to warn you though there is a very small risk of you losing some or all of the use in your left arm & hand.
Andy: Ok how soon can this happen?
Dr Farah: I can schedule you in for August 19th, the operation will take around 3-4 hours
We agreed the date and we left, mixed feelings, OMG I have a brain tumour....I need an operation. Andy reassured me as we went and got a coffee. "Hunny, I'm truly impressed by Mr Farah, I like his approach, I've got every confidence in him" he was squeezing my hand reassuringly. Hard to smile and to feel elated though when you know something 'Fluff!' was growing on my brain. The good thing was too, not too long a wait 27 days and in that time I'd got to have more scans etc., Mr Farah had said if I showed any more problematic signs to call his team and he'd have me admitted immediately but he felt this time scale was ok.
Out of the blue week commencing 5th August I got a call from Mr Farah's Secretary "Julie, Mr Farah would like to admit you on Sunday for you to have your operation on Monday (The 12th), a slot has come up".. "I'll be there" I replied" I called Andy and told him the 'good news'...
Sunday 11th and I'm admitted into the wonderful Walton Neuro Centre in Liverpool. I/we cannot speak highly enough of the teams here, it is an excellent hospital and facility proudly serving the Northwest of England. I really could not have been in safer or better hands.
Monday morning and although well outside of visiting times Andy sneaked on to the ward around 08.00 to see me, it's hard not to think like this but we both knew the seriousness of the surgery and the possible outcomes including in the back of our minds that we might not see each other again. We both have positive outlooks but even at times like this you cannot ignore the risks and possible outcome. by 08.45 I was on my way down to theatre..
Ok Andy here for this bit: I spoke to the Staff Nurse and asked how long did she think Julie would be in theatre and recovery and before she was back on the ward, she thought it would be around 1pm but to call for an update. I went out to my car drove off to get some breakfast with the plan to go home, it's only about 8 miles away, over breakfast I decided I'd go back to the hospital and wait in the car, I wanted to be on hand. By my standards I was pretty patient. I called at 1.00pm for an update, Julie was still in theatre. I called at 1.45pm, still in theatre.. five hours after leaving the ward... I called again at 2.15 and it was suggested "Why don't you call us about four for an update?" My response was "Why don't you wait for me to arrive on the ward in about five minutes!" By the time I got to the ward Julie was back on the ward sitting up drinking tea!!! I was shocked, I expected a woman with her head heavily bandaged and dropping in and out of sleep, not this! (see the picture).....-------------------------->
Is this not unbelievable? And Mr Farah had done an excellent job not only completely removing any visible signs of the tumour, Julie suffered no long term side effects and his sewing would be a credit to any fashion house designer. Look at this! (sorry if you are slightly squeamish) Note to others we thought I'd be having my head shaved or part of it, you can see and be assured that isn't always the case or necessary.
And here 'we' are later that afternoon, don't you just love the DVT 'stockings'? For the more observant amongst you, 'madam' has her own cupcake mug with her, no paper cups for this one hahaha.
Time for another of Andy's insights.. Julie's best friend introduced to you all in her last blog 'Ju' (for June) was staying with us, as soon as she knew of the planned hospital admittance was on the next train from Grimsby and with us for as long as we both needed her here.
Ok, the insight, If you have to go into hospital obviously friends and family want regular updates. from personal experience it is exhausting, I was jumping in my car straight after evening visiting (so around 8pm) and hitting the speed dial to call family, Julie's Dad, Then her two children Aaron & Emma, then my Mother, then close friends, even with the luxury of the car phone (hands free kit) I/we were still making calls at 10pm, I'd been up since six and had was putting in twelve hour days commuting and at the office. So 10pm still not eaten, still not contacted everyone! Most of our closest friends are on Facebook so I set up a private group on Facebook and updated everyone else daily by this method. It took the pressure off , removed the feelings of guilt and we could add people to the group as needed. We still use the group periodically today. We have amazing friends but as the other half you need to look after yourself too and even going through this daily routine for the five days Julie was in was exhausting. My advice is Contact your nearest and dearest, ask/delegate them to inform other relatives and update everyone else via a facebook or email group.
Right It's Julie back to end this particular blog. Fluff had gone! Not without a fight it seems but Mr Farah had obviously heeded my previously mentioned housekeeping instructions teehee. The evening of and the next day Fluff wanted a fight, twice I had to hit the emergency buzzer for help, I totally lost the use of my left side I cannot describe the feeling of panic and horror, thankfully both episodes passed after two or three minutes, still felt like hours though, I didn't want to be paralysed, I knew and had been warned there was a slight risk I would suffer damage to my left arm function during surgery but god, I so didn't want to be completely paralysed. Mr Farah and the registrars believed this was down to temporary post-op swelling and increased my steroid & fuzzy drug dosage, as it never happened again thankfully they were right. Four days later I was home and we were due back in on the next Wednesday the 21st for a review and the biopsy results.......
We'll leave it here for now and finish with our sincerest thanks to Mr Farah and the full team, his Secretary, The ward, theatre, outpatients and the appointments teams, we are forever grateful oh and let's not forget 'Ju'... .
No comments:
Post a Comment