The Mask & Macmillan…

Well, we arrived back from Grimsby, my head was full of a combination of the distress I’d caused and the trepidation of what was to come, I feel like I’ve abandoned my family, as we drove away I could not help thinking  will I see them again? I still don’t want to know how long I have left though… I’m just hoping I can beat all the odds but deep down I know those words "you will succumb to this" will one day come true. I cannot stop myself from thinking that I’m dying and why me? Why me!! I’m struggling to hold back the tears but I must keep my brave face on for my family, closest of friends & my rock, Andy , (Well I’ll call him a rock here but he’s affectionately known as my Frog Prince hehe..)

 

Things were moving on, I was called in for Scans so that they could pinpoint the area ‘fluff’ had once occupied, this was so that the radiotherapy beam would be pin point accurate. No risks can be taken with this treatment, it's essential in a case like this that you do not move your head during the procedure, hard enough to do at the best of times but to ensure that if you sneezed mid treatment you wouldn’t end up with more problems than you started with the team build you a mask that clips to the radiotherapy room treatment table, I’m not looking forwards to this one bit!

It’s time to get fitted for a mask, THE MASK!  It’s bad enough going through all of this, I’m a bit of a wimp despite my rock solid exterior, I’m afraid of the dark… I don’t like confined spaces… I’ve hated going inside the scanners and I’ve had to ask them to halt things more than once, now they’re fitting me for a mask!

We arrived at my soon to be ‘second home’, Clatterbridge Hospital Site here on the Wirral Peninsula, It’s a sprawling site with an old fashioned hospital in the middle of a huge roundabout as in you can drive all around it. On the outer side of the road though are other buildings including The modern building that is the Wirral St John's Hospice, around the back of the site is the amazing Claire House Children’s hospice and half way around is ‘The State of the art' Clatterbridge Cancer Centre.  As we approached the Cancer Centre security barrier Andy explained to the guard why we were here, he raised the barrier. I’m not sure if it is all hospitals but Clatterbridge do not charge Cancer patients parking fees, the rest of the site is paid parking though.

As we walked through the automatic doors we were looking at a well manned (by volunteers) reception desk. We had to ask for the.. wait for it… ‘Mould Room’! That’s mould as in ‘to shape’ as opposed to the “fluffy” stuff that grows on cheese and bread.. hehe.

One of the smartly dressed volunteers actually accompanied us through the corridors and delivered us safely to the brightly lit small and cosy Mould room waiting room.

Part of the mystery of ‘The Mask’ was removed for there were several models in the waiting room, a light brown coloured mesh the shape of a face, some were just head, one was head and shoulders and they had a plastic frame with clips on that would ‘bolt you to the treatment table! ’ hahaha I’m fooling with you, we’ll get on to it further down but if you’ve been told about needing a mask, rest assured it’s not as scary as it all sounds. Anyway, don’t take my word for it, ‘here is one (Well two) I made earlier’ hehe

Andy and I were discussing the mouldings when in walked a lovely young lady, a radiographer named Katie she introduced herself and explained why we were here, showed us the mask and explained the process, how simple it was and assured, “no it wouldn’t hurt”, Ha, I’m still not convinced lovely as Katie is.

There was a short interlude whilst Katie went and prepared ‘The Mould Room’  and a couple of minutes later we walked across the narrow corridor into a brightly lit, warm but sparsely kitted out room. In the middle was an adjustable treatment table, there were Kitchen unit like cupboards and work top at the one end with a square metal contraption on top of it, besides that there was Katie & a colleague. Before I was asked to lie down on the treatment table I was shown a flat sheet of well it looked almost like very thin Perspex with lots of holes in, I guess it was about 45 cms square ( 18 inches square in ‘old money') . Calmly I was shown it and I got to feel it! It was slightly flexible but it wasn’t going adapt to the shape of my face! It turned out that the square metal contraption was a sort of bath/kettle, the Chef’s amongst you would say a Bain Marie…

The Perspex like sheet was submerged into what was now steaming water, I was 'invited' to lie on the treatment table, “This is the easy part” I thought, I get to lie down!  The lovely radiographers explained it would take a couple of minutes for the warm water to make the material soft and pliable enough, then, once it was the pleasantly warm (but not hot) material would be placed over my face and the two of them would work swiftly using their hands to mould the mask to my face,  It probably took a minute, ninety seconds at the outside. It wasn’t an unpleasant sensation though for obvious reasons you have to keep your eyes closed. Anyway back to the process the material was cleverly attached to the frame that would be used to clip my head to the Radiotherapy treatment table when the treatment started. We were nearly done, I was asked was it comfortable, it was but I wouldn’t want to be starring in the Phantom of the opera in it, wasn’t too impressed with the drawn out nose they gave me either…..

So I then had to lie there whilst the mask set. Several times I was reassuringly asked how I was, “Yes, good thanks” I had to speak I could hardly nod my snuggly fitted to the table head! “OK we’re nearly done, the mask has hardened, "we now just need to put a few marks on it to help us when we treat you and we put your name on it”. The Mask remains at Clatterbridge for the duration. (Click on the picture to enlarge)

All sounds very drawn out and convoluted but truly, probably eight to ten minutes from arriving in the Mould room until the mask was finished and we were saying our goodbyes.

On the way out we saw Macmillan Cancer Charity,  I’d call it a shop but it more like a library. We looked at some of the many brochures whilst their representative was talking to another couple, as soon as she was free she sidled over and asked could she assist. We explained that I’d recently been diagnosed with Grade IV Glioblastoma Multiforme and that I was shortly to start my treatment. As we chatted the lady suggested several books for us to read, for me to understand my treatment, for Andy on what to expect and what sort of support we could both get. We discussed our families and we explained we’d broken the tragic news to the kids just days before. “What about the grandchildren?” she enquired, we both answered almost in unison, “god no, they’re too young to take it in”. There was a slight pause then we received some amazing advice from a perspective that we hadn’t thought about. “The elder grandchildren, (that’s Abbey, Abbie & Chloe all then eight) you really need to explain to them that grandma is poorly, you don’t have to go into graphic detail but they’re likely to be confused not only as and when you lose some of your hair (for you will) but also grown-ups talk and often whisper at times like this, they’ll pick up the odd word and they might end up thinking it’s mummy or daddy who are poorly, not Grandma” We were stunned, we hadn’t given this a thought, as we looked gormlessly at each other realising we’d missed the opportunity and wouldn’t be seeing the kids for a couple of weeks, our Macmillan ‘Angel’ reached to a shelf and picked up a couple of booklets, passing them to us she said, “You’ll find these will help Mum & Dad explain to the children, there are different ways depending on their ages”..  So we had food for thought when we got home. We weren’t finished yet though! Our friendly McMillan advisor explained how they could help further including mentioning I’d get £100 voucher towards the cost of a wig (Courtesy of Clatterbridge Cancer Charity), that Clatterbridge had a department that could supply you with head scarves and teach you how to wear them in many different ways and they would assist by supplying and filling in disability parking badge forms, travel pass forms, a tunnel tag application and benefit forms. Andy explained we would not qualify for benefits, for whilst I was already getting a sickness benefit, that Andy’s salary would exclude us from means tested benefits. “There is a benefit called ‘PIPS’, its recently introduced but if you’ve been diagnosed terminally ill with a life expectancy of less than six months (god that was a shocker for me!) then be you a prince or a pauper, you qualify! We’ll do the forms for you”.  Amazingly helpful and more will follow on this in a future blog.

If you’ve just read that last piece and are thinking “God that’s a bit harsh” let me clarify and reassure. Your Consultant will write to your GP to confirm your diagnosis, certain cancers irrelevant of how long you actually have are classified in benefit terms as you aren’t expected to live 6 months, you actually get a certificate to that effect and boy does that knock the wind out of your sails when you see that in black & white! It sounds harsh but as daft as it sounds, it helps. You are ill you deserve to have dignity in the time you have left be that 6 days, 6 weeks, six months or six years, fighting for benefits or the things in life that will make life more comfortable as you enjoy the time you have left is not right. You do not want to waste your life fighting and getting frustrated by Bureaucrats and systems. Whether the benefit levels are right or wrong is another story but the fact that you can get these (with Macmillan’s help) with ease is a huge weight off your shoulders right now. Also ask what you are entitled to, I’d say especially to the elder generation whose pride often stops them applying, apply, you of all of us have worked your entire lives and yes you are damn well entitled to this, it is NOT Charity.

 

We’ll enlighten you more on this side of things in our next blog but for now, our sincerest thanks go out to Macmillan Cancer Support especially the Clatterbridge team.. Can’t wait to find out more? Then click this link http://www.macmillan.org.uk/Home.aspx   Remember married or single you are not alone, Macmillan are here for you, they're just a phone call away....

 

 

And..... Thanks to my mask maker.. Katie...

 

 

 

 

 

It's Time To Tell My Family

Saturday August 24^th, we’re all packed and we’re almost ready to load the car for a dual purpose trip, one to return June home to her beloved Andy (yep another Andy) and to break the news to our family.

My Andy was upstairs, Ju & I were in our Dining Room when outside we heard the screech of car brakes quickly followed the sound of a skid and then the inevitable thud, a car had smashed into the front of a car….Andy’s car! I shouted up to Andy who was already looking out of the window looking at a Silver Grey Ford KA with great big Pink Flower Decals all over it, in a split second the driver was backing up and was driving off at speed in their very damaged car! Andy dialled 999, he ran downstairs and ran out to the car, the front passenger side of the car was ‘caved in’.  Shortly after a Police Traffic officer arrived, sadly there was no sign of the rogue driver and ‘its’ car.. Andy was fuming, upset, we had to make this journey, finding a hire car at this time of day on a Saturday was going to be a nightmare. Thankfully on closer inspection and with a bit of brute force and a few tools Andy managed to get the car roughly back into shape, he had the Policeman give it the once over and he confirmed it was ‘legally driveable’.

So disaster averted we had to get on the road to Grimsby, This is a journey I would normally look forward to but instead I was filled with dread!

Telling my children and family I’m dying is probably the hardest thing I’ve ever had to do!  How I did it without breaking down I will never know! It’s like the mothering instinct kicked in and made me want to be strong and positive for everyone else.. protect thy family with all thy might! I’m  sure if I get as far as treatment then my walls will flake a little and some of my vulnerability will show itself…. At the moment I feel I am in denial… I’m on the outside looking in on someone else’s dream…

During the journey we discussed what we needed to do and in what order. Aaron & Emma both have children, we needed to get them on their own for this, a plan was hatched.

We dropped June at home but we’d need her help again soon. We checked in at our hotel and then we headed towards Aaron & Vicky’s; on the way we called Vicky’s Mum, Donna. We explained we had bad news to deliver and asked would she come and look after our Grandchildren whilst we told ‘the grown ups’, Donna kindly agreed. We drove the short distance to the kid’s house; I was not looking forwards to this.

Donna took the excited and pleased to see us Abbey & Millie upstairs, and we sat down, there was no easy way to break this news. We were stunned at how maturely they handled it, I hugged them both like I never wanted to let them go, there were lots of questions many we didn’t have the answer to, we promised to keep them informed of everything, I asked them to please ensure Andy continued to be treated as part of the family after I’d gone, it was so important to me. We had to leave them to go and see Emma; we’d see them again before we returned home.

Next stop was to June’s as she had agreed to have Abbie, Chloe and Ollipop taking them upstairs to play whilst we sat down with Emma, Bob was away for the weekend. I sat next to Emma and held her hand, she knew there was something wrong, she had desperately tried to avoid being on her own with me, I calmly explained I had been told I had been diagnosed with Brain Cancer and It couldn’t be cured, poor Emma was heartbroken, she sobbed and sobbed I felt so badly, we hugged for an age, again so many questions, again I begged Andy would still be involved in their lives.

As bad as today had been tomorrow will be no better, I had to tell my Dad, I was going to break his heart…..

Whilst we wanted to tell those close to us in person wherever possible I had to make an exception with my Brother Mick. Mick & his wife Sue lived just a couple of minutes from Mum & Dad. Mum is sadly ill and Dad whilst always my rock in his early eighties I feared what this news might do to him so I asked Mick & Sue to meet us there. Dad was his usual chatty self in fact it was hard to get him to quiet enough to tell him I was ill and whilst the hospital was going to do all they could for me, they couldn’t cure me. I’ll never forget the look as he just said “no, not our Jooie” as we held each other’s hands. Once the initial shock was over and I’d again asked Andy be part of the family after I’d gone we talked about almost anything but my illness and with my brother Andy (Yep, yet another Andy!) there we were soon talking fruit and veg from his allotment and I was seeing what I could ‘cadge’ out of him. We’d see them all again the next day, for now it was time to go see the kids again but first we needed to eat, it’s been hungry work delivering bad news.

It breaks my heart to see my wonderful children, amazing husband, Dad, brothers, family and friends, torn apart by this cruel disease.. It’s those you leave behind that suffer the most…

I hope one day when they have had time to come to terms with all this, and they are going about their day they will chuckle at my “Mrs Bouqet” ways and the silliness of my need to plump cushions, throw out clutter and dust anyone who stands still long enough! How daft am i? Life itself it seems is far more important than any speck of dust or piece of “fluff” on the carpet! But without these idiosyncrasies I wouldn’t be me!

As the blog is to try and help others, our experience was, this oh so difficult day was made slightly easier by planning and considering in advance how each family member was likely to react and key was that we sought the support of others. We needed to consider a wide spectrum not just ourselves, from the ill and elderly to my kids and our grandchildren. (At this point we didn’t feel it was right to break the news to young children and we didn’t; there will be more on this in a future blog for the Macmillan Cancer Charity team at Clatterbridge raised this very topic with us when we shared our experience with them.)

With our heartfelt thanks to June, Donna, Mick & Sue xx

Clatterbridge Bound

It’s Thursday morning 22^nd August, 2013. Yesterday I was told in effect that I’m living on borrowed time, I’ve got a very aggressive form of Brain Cancer and there is no cure! you can imagine we haven’t slept, my head is still in a spin, how am I going to tell Aaron & Emma, my dad, he’s going to be devastated… I’m your original Daddy’s girl, I’ve got four brothers, I’m the apple in my father’s eye, there’s so much going through my head, my eyes are raw with crying,  No.. Sobbing…  Andy & I sobbed for a large part of the night.

June is still with us and is coming to Walton where I’m to meet with the Clatterbridge team and to learn my fate or as it was explained to discuss my ‘Care plan’ I’d experienced the expression ‘Palliative care’ in my healthcare assistant’s career, I never expected to be on the receiving end of it.

Not such a lengthy wait today, a nurse showed us in to the room just before the one where we had been dealt the terrible news the previous day.

On entering the room Andy & I were introduced to Dr Haylock, Consultant Oncologist & Clinical Director for Radiotherapy at Clatterbridge, he was accompanied by another Doctor who was part of the team and she was gaining experience as she was progressing her career in this specialised field, Dr Haylock explained he’d like his colleague (Sorry another name forgotten, If only I’d known I would be writing a blog a year on!) to run the meeting and were we ok with this, we were. Very compassionately I was asked if I knew why we were here, I explained what I’d been told the previous day and that I fully understood the consequences of it. The Doctor explained I’d need Radiotherapy and Chemotherapy, that my treatment would take place on the peninsula at The Clatterbridge Centre. I needed to sign consent forms, I was also informed I’d need to have a face mask made; this would be done at Clatterbridge too. Treatment would start soon after the face mask was created. Dr Haylock and Andy had been talking; I’d seen Dr Haylock writing on a piece of paper out of the corner of my eye, meanwhile I’m still listening, Andy is trying to multitask and trying to listen to two conversations, to the ladies reading this you’ll know men & multi-tasking just don’t go together! Hehe… (It turned out Andy had asked Dr Haylock to write down the name of my cancer - Grade IV Glioblastoma Multiforme (GBM IV) - Dr Haylock, softly spoken and with compassion in his voice went on to explain he and his team would do whatever they could for me in my time remaining and hopefully extend my life expectancy, he explained that it was impossible to forecast how long I had left and explained that even with such a bleak prognosis he was aware of two patients who had lived beyond five years, I so pray I’m one of those who doesn’t succumb to this. I still didn’t want to know how long I had left. Our meeting wasn’t unduly long, it was caring, reassuring and handled with sensitivity. Dr Haylock explained due to my recent surgery this would delay the start of my treatment as my skull needed time to heal, we were looking at starting in two weeks; our next appointment was in a few days for ‘the mask’ fitting.

My main concern was what if these aggressive cells were growing inside my head again already, was there another tumour forming already? I had reservations about the ‘the mask’ but was assured it wasn’t as scary as it sounded, I suppose I’d find out soon….

Although still confused, worried, frightened and in a daze, I felt strangely comforted by the consultation, I felt, as I had all the time up to now, that I was in safe and the best of hands.

As we left the room we caught up with Ju , bless her she’d been waiting patiently for us. Time for a little light relief and a treat, both Ju and I were big fans of the TV show Friends, so it was time to show her Liverpool’s very own ‘Central Perk’ the infamous café In the sitcom! We had fun and enjoyed coffee while episodes of the sitcom where playing on the TV screens, thankfully there wasn’t a Phoebe look alike singing Smelly Cat…Smelly Cat… that really would have been surreal, of course we had to take a few pictures too. It was good to forget the seriousness of the situation and revert to being silly kids if only for long enough to have a drink….

Once home the realisation of family life kicked back in, I couldn’t tell my children over the phone! I needed to be there to hold and hug them and reassure them, to tell them as soon as possible…. I think this was the most scary thing of all… the thought of breaking their hearts and causing them so much pain.

Andy’s mum Maureen & her partner Henry were due to visit for the weekend, Andy said he’d cancel their visit and book a hotel for us in Grimsby, it was almost like Bethlehem at Christmas!  a bank holiday weekend close to the popular resort of Cleethorpes, everywhere was full,  thankfully he eventually found one but as demand increased so did prices, two nights in a Premier Inn, £80 a night room only, so £160, being ill can be expensive.

So what would you have done then Mr Shute??

Well, you'll have read Julie's account of what was the most horrendous day of our lives. I truly, truly would not wish this on anyone. Julie's perspective mirrors mine precisely.

I wanted to add this bit though. We're grateful beyond belief to all of the teams that have given Julie and myself extra time together but I want to share my thoughts on the patient's and their partner's view of how news is broken to them. To clinicians and nursing staff reading this I fully appreciate you have to do this day in day out and without the emotional involvement with your patients, but there has to be a better way than how Julie was informed indirectly and whilst alone and over the phone that she had cancer, I just ask you to consider if there is a better way....

So our circumstances were this. At the original consultation one of the options Julie's surgeon gave us was to remove part of the tumour whilst she was under anaesthetic and have the biopsy results confirmed during the operation before proceeding.

I know from past experience too as I sadly lost my father to Brain Tumours/Cancer many years ago that on the day of surgery his team confirmed his tumours were malignant so, despite being informed Julie would have her surgery and we would be called in a week after for the biopsy results, the reality is they could have been relayed on the day of the surgery. I fully understand why it is better not to in some instances, It is better that a patient spends their time recovering and getting back to good health rather than being distracted and further upset by the devastating news to come.

We were told Julie would have a review a week after her op and at that point the team would inform us of the biopsy results. That is fairly reasonable and had that happened I would not be writing this now.

The reality is Julie received a call the day before the aforementioned biopsy result meeting. Julie explained the conversation as in one of the specialist nurse team at Walton had called to inform Julie that an appointment had been made for the day after (So Thursday) with the Clatterbridge Team. Clatterbridge is our local (and most excellent Cancer Centre) Julie explained how she felt when it hit her after she'd put the phone down. There was no other conclusion resulting from this call other than she had cancer..... Julie had her best friend June in the house but what if she had been alone? What if she was elderly, what if she was bordering on suicidal? Thankfully she was none of those things So was this truly the best way to deliver this news? No compassion, no explanation, no checking Julie understood the consequences, no assurance? Truly this is poor communication in anyone's language! I'll explain more and then I'll offer an alternative - it's easy to be critical but it would be fair for medical staff to say "Well what would you have done then?"...

OK Julie called me at my office, I didn't take it in initially but when she explained "So I've got cancer then". My reaction was I needed to be with my wife but I was fuming as I packed my things away. How dare the message be delivered in this way. So I called the hospital and spoke to the specialist nurse politely and ran through the scenario as it happened, the upshot was she accepted this wasn't the best way for this to have occurred and had a degree of empathy for us. I told her I'd raise it with Julie's Surgeon in the meeting to get the biopsy results.

So Wednesday came and we arrived in Walton Outpatients department, we waited for ages. When we got into the meeting, two nurses and one of Mr Farah's registrar surgeons who apparently had been in theatre too introduced himself. Before he started I thanked him for giving us his time and I informed him I wanted to express my disappointment at the way Julie had been 'delivered bad news the previous day'. This is one of the few times during Julie's illness and treatment that I've clashed with anyone. The justification was "Well once we knew it was malignant we had to move fast" and he was not moving from that perspective. I told him I understood and was grateful they had moved so fast but I still felt (and to this day)this was handled appallingly. There had to be a better way, there is in my view at least one better way!

Before I go on to 'the better way' Its hard for me to deliver this critique especially to a team that saved my wife's life and has given me and our families added time with Julie, time to be honest we did not expect. I'm not whining for the sake of it, I truly believe patients & their families deserve better than this, Hospital Staff and the Senior Management maybe even Government Ministers in fact anyone who has never been on the end of this devastating news needs to give serious consideration to how patients are told 'bad news'. I'd add the manner in which the same Doctor/Surgeon broke the absolutely heart breaking news to us (that Julie's form of cancer was incurable/Terminal) was done with such amazing compassion so this wasn't a Doctor personality thing it is a 'System Thing'...

I can imagine the scenario in advance of all of this, a team meeting going through patients cases and Julie's case comes up, this lady has Grade IV GBM, we need to contact Clatterbridge and arrange an appointment for her ASAP, she'll be needing Chemo & Radiotherapy.. One of the specialist nurse team agrees to make the appointment and relays that to the patient......... Sounds simple, it is but it does not consider how the patient will take this news or their circumstances, health, age, are they alone or with a carer/partner.

"So, what would you have done then Mr Shute?" a hypothetical question for I've never been asked but here goes.

How about this: On admittance to the ward, pre surgery as was the case the surgeon or one of his registrars and or one of the accompanying nurses visit the patient they explain about the procedure and recovery process and adds at the end of it "If all goes to plan we expect to discharge you in four to five days, at that point we will be arranging for you to come back in next week for your biopsy results. As a precaution and do not be alarmed by this we might also be making an appointment for you with the Clatterbridge Cancer Team for you, this does NOT mean you have Cancer it is precautionary and its standard procedure in cases like yours....."

I hear the arguments "We can't make appointments and then not use them" no one is asking you to, just forewarn patients it might happen...

Lord forbid it ever happens to anyone but I'm certain medical staff or not you would not want your partner, Husband, Wife, Mother or Father inadvertently delivered the news that they had cancer whilst on their own or over the phone....

I'd welcome feedback in the comments on this, we've got over 2,000 readers of the blog, to date I think two comments across the blog. I'd seriously welcome feedback on it. We want to help others on this road, I may be proceeding with blind arrogance of me thinking I'm right and everyone else thinking 'what an idiot', please help me/us out here thanks so much.

You will succumb to it

Hiya, I'm back, have to warn you though this one isn't going to be funny in the slightest.

I was feeling great recovering at home, amazing what fun and amusement Ju and I can have, Andy is back at work.

It's Tuesday, I knew we were going to Walton to see Mr Farah on Wednesday as planned for a review and the biopsy results; late morning our house phone rang, thinking it was 'The Drugs Police' (Andy) teehee bless him ,he calls me probably half a dozen times a day with the immortal words "Are you OK, have you done your drugs"? So I expected the call to be from him, wrong!. A lady was on the other end of the phone, she explained she was a nurse in a team who worked in conjunction with Mr Farah's team and that she was calling to tell me an appointment had been scheduled for me with the Clatterbridge team at the Walton Centre on Thursday. Thursday? I asked, I thought it was tomorrow? Not taking in the word Clatterbridge and the consequences of that the nurse explained "no, your appointment with Mr Farah is tomorrow as planned, this is another appointment with the team from Clatterbridge". It still wasn't sinking in, I just said oh, ok, I'll tell Andy. As I put the phone down I felt like I'd been hit with a hammer, my legs went and I had to sit down. The words in my head were "Oh my god, I've got cancer", Clatterbridge is our local Cancer Hospital, I was numb, inadvertently I'd been told I had cancer. I reached for the phone to call Andy at work. I explained the call even he queried the day, I then said "No this is Thursday, with the Clatterbridge team, so much for getting the biopsy results tomorrow I must have cancer!" Andy said "I'm on my way home....

On getting home the three of us, June was very much still here were in a state of shock, I felt fine in myself, how could I have cancer? It was a tough night, none of us slept well.

Wednesday 21st August 2013, we arrived at The Walton Centre and made our way to the out patients team, the wait seemed lengthy and we were beyond our appointment time and the place was busy, my name was called and we arrived in a consultation room where one of Mr Farah's registrars was sitting along with two nurses.  We shook hands and sat down having done the introductions and the apologies for the delay. I was asked how I was, "I'm not sure I replied, I had a call yesterday telling me I have an appointment tomorrow with the Clatterbridge team, so I assume I have cancer?" Nothing could prepare me or Andy for the bomb that was about to land..

The registrar, forgive me with the shock of all this we cannot recall his name, he started, "your operation was a complete success, we removed all visible signs of the tumour, unfortunately the biopsy results confirm this is an incurable form of brain cancer, whilst we have removed all visible cells this is a grade four cancer, it is aggressive, very aggressive". I felt Andy squeeze my hand, "what did he say?" ran through my mind. Andy for once was totally lost for words, I drew a breath and said "It can be treated though?" I'll never forget what followed, "we can give you radiotherapy and chemotherapy that's what Clatterbridge will discuss with you tomorrow but sadly it remains incurable, you will ultimately succumb to this" It was my time to go dumbstruck! Andy realising what was said asked "How long does she have?" The Doctor looked at me as he answered, "I can give you a rough idea, but do you want to know?", I shook my head "No!, no I don't want to know" Andy looked at me as if to say surely you need to know, I didn't, I wanted to wake up from this nightmare but we were both numb. The Doctor explained the Clatterbridge team would take us through everything tomorrow and treatment would start probably the following week. there wasn't much else to say, we were both reeling, we stood up to leave, it was bizarre hearing Andy politely thanking the Doctor for his time & I apologised for crying! One of the nurses sensed our distress, she asked if we wanted a quiet room to take this in, we said please. Outside we stood in the crowded waiting area whilst the nurse tried to find a room, Andy and I were clinging to each other for dear life, we were both crying, in my mind I was hearing "I'm going to die, I'm too young, It's not my time, oh my god, my family" People around us must have realised we'd been hit with bad news, I suspect to this day none of them will ever realise just how bad.. The nurse appeared she'd found a room with one chair in it, she offered to get us glasses of water, we accepted, I sat down Andy knelt in front of me, we grabbed each other and wailed, it was hell for us both, no words were spoken we just sobbed and sniffed. The nurse returned with our water, well one cup. we thanked her and she offered her sympathy, we thanked her as she explained about how excellent Clatterbridge was(is). I still wasn't taking much in, I was thinking about how I was going to tell my children. In a split second my rational side kicked in "Get me out of here".

On the short but oh so long walk to the car, neither of us spoke, we were numb & devastated, as the remote opened the car doors Andy opened mine and I got in, Andy got behind the wheel,he started the car and he turned to hug me, "get me away from here, I want to be somewhere quiet".

Andy drove for what seemed like an age, "I'm taking us to Crosby" he said, its five miles away and  where the mouth of the Mersey meets the Irish Sea, and where Anthony Gormley's Another Place statues feature on the beach and in the sea, its tranquil. We parked up and we hugged each other for grim life again we cried like babies, we cried until my mouth was dry I needed a drink, there was a burger van, Andy went and got us tea.... Our tears had run dry, Mrs practical was back, "We need to go home to tell June, she'll be worried, I'll call her to tell her we are on our way".....

Let's Get Serious

So, I was being referred to a consultant Neurosurgeon at Walton Neurological Centre in Liverpool.

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.

1. We do nothing, but honestly I do not recommend this.
2. I can have you in and we can do a biopsy and establish if its malignant or none malignant
3. 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 looked at me and asked "What do you want to do", Mr Farah interjected, "I don't need an answer from you now". I just looked back at Andy and said "There's nothing to think about, it has to come out, I'm right handed if I have to cope without my left arm so be it".

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'... .

The Mystery of Fluff

Why “Fluff” I hear you say…

Hahaha… Journal Jokes! Maybe I’ll get to a few of those when my quick thinking sense of humour and impeccable patience returns! Thanks to the drugs for the brakes on my quick thinking blonde brain on that one lol, I’m sure the peace is giving my amazing man, our family and truly fantastic friends a rest from my constant “jibber jabber” hehehe

I have to say I have the most treasured and amazing people in my life right now, Armed guard duties are abound for some time to come, along with my irritability and need “to do stuff” (yeah you got it, dusting, cleaning) they need a sainthood!

My lovely friend Ju, who knows me upside down and inside out, has such a fantastic sense of humour and has the ability to poke the bright side with a sharp stick of jest, decided to help me name the thing (Growing in my head)…. It is now “FLUFF”

Well my kids and friends that know me well would call me a bit of a “Mrs Bouquet”

If it doesn’t move dust it! If it does move dust it! Lol

No bit of fluff is safe… I’ll pick it up and put it in my pocket if necessary!! Well guess what?

This “Fluff” ain’t hanging around for long either! I’m gonna teach the surgeon how to do housework to my standards ;)

Until then we have fuzzy drugs to stop the little blighter making too much mess up there :-)

IF you needed to call an Ambulance would you know what to do?

Whilst this is Julie’s blog the purpose of it is to help others on this journey, currently Julie has been explaining the background to  the initial events. Part of what we want to do is help guide those on a similar journey and bring up subjects that you may or may not encounter and how we dealt with them. I hope this guidance helps.

For example:

My last piece said don’t ignore even simple symptoms or one off events, to that I’d add these pearls of wisdom as the partner of someone having lets call them at this stage ‘problems’.

a)      Stay calm at all times – you need a clear head and panicking or mithering as we say up north will only add to your loved one’s distress. Even at times like this Julie is more concerned about others than herself, I suspect your other half would be the same.

b)     If you need to call the emergency services (We’re getting a lot of overseas readers – thank you, fyi 999 is the emergency call number in the UK) dial 999 stay calm and ask for the Ambulance Service – remember the operator at this point is handling calls for the Police & Fire Services too so all you need say at this point is ‘Ambulance Please’ – don’t go beyond that this person cannot help and yelling at them certainly won’t. They’ll transfer you to the Ambulance Service immediately.

a.      At this point stay calm and be polite and precise – do not shout. An example of how the call should go is: “my name is Andy Shute, my wife Julie has just suffered a seizure/suspected stroke following discharge from hospital yesterday”

b.      You’ll then get a series of questions asked of you,  the first probably what is your address?– Your concern will be we need an ambulance not questions! Be aware the operator will at this stage (without speaking) have already arranged an emergency ambulance or paramedic despatch, they’ll be on the way.  So stay calm and answer the questions these are essential and the operator will be relaying this info to the paramedics and ambulance crew live.. Some questions may get asked twice, again just go with it, arguing with the operator that “I’ve already told you that” is not helpful, best they are accurate and you give them the info as soon as possible.

c.       In emergency situations the operator will often stay on the line with you until the ambulance/paramedics arrive, this is twofold 1) It helps reassure you and 2) it enables them to advise you should your partner’s situation change/deterioriate – again they’ll relay that to the team on route.

c)      It’s probably helpful (but not essential) if you are calling from a phone with a hands free/Speaker facility – that way you and your partner can both be assured by the conversation and if you need two hands they’re both free.

d)     Make sure you or anyone else there opens your exterior doors, you really don’t want the paramedics ringing the door bell and waiting for you to struggle downstairs to open the door – remember every second can count here. Make sure passage ways are clear if they need to use a stretcher or wheel chair, make life easier for them.

e)      Once in the house and with your partner. Briefly explain the symptom(s) and background but stand back from your partner, these guys have equipment with them and need space to get to your other half. You’ll want to help but right now the paramedic is all your partner needs.  Be on hand to answer questions but I’d say at this point unless spoken to keep quiet, they need to concentrate. If they speak to you, you might want to ask “Is there anything I can do” but besides this the best help you can give is to stay calm, keep out of the way and speak only when spoken to.

f)       You may or may not decide to go to the hospital in the ambulance, in our instance I chose not to for a) I needed my car to get home and b) it gave me chance to get a small case ready for Julie knowing she would probably be admitted. IF YOU follow the ambulance to the hospital in your own vehicle under no circumstances ‘follow them’  by that I mean they will be exceeding the speed limit, jumping red lights all of which they are trained to do and are legally entitled to do, you on the other hand are NOT! You need to get to the hospital in one piece, consider others on the roads not just yourself, keep your concentration. You’ll find the difference in arrival times is minimal and your partner may not have hit A&E even by the time you get there.

g)      Once at the hospital go to A&E reception and explain your reason for being there, they’ll get you to your partner  straight away – Again be polite, I’ve seen hospital staff being verbally abused for doing their job, it is not fun, nor is it ‘big or clever’ staying calm is the key to all of this.

h)     As with when the paramedics arrived at your house – remain calm and stay out of the way and speak when spoken to. You in a distressed state is not going to help anyone.

i)        We keep a note book almost like a diary of events, often it is easier to hand something like this to the A&E Doctor to give him an idea of what happened and when (especially with multiple recent admittances), they’ll seek clarification from you both.

I did clash with an A&E Doctor during Julie’s second admittance (In Lancaster Royal Infirmary) The circumstances were this.

During Julie’s very first admittance the A&E team conducted tests on Julie, one was asking her to touch certain parts of her body with her eyes closed (Nose for example) also to outstretch her arms and keep them straight, it fast became apparent that there was weakness in Julie’s left arm for it dropped lower (limb weakness is a recognised symptom of a stroke). In the second A&E The doctor conducted the same test with Julie’s eyes wide open.. Julie is both dogged and determined and I knew she would see this as a challenge not an aid and would fight to keep her left arm straight, she did hahaha.. I said to the Doctor “During Julie’s previous admittance when doing this test with her eyes closed her left arm dropped”, he snapped at me to the effect of “I think you’ll find I am the Doctor around here”… I just responded “Fine” and shut up and stood away from the bed. He did though do the eyes closed test and sure enough the arm dropped.. About an hour later the Doctor apologised to me saying he’d been on call and in A&E most of the previous 48 hours, and added that he should not have responded like that to me. I understood why he had, I don’t regret highlighting the test or this subject, but equally I knew it was not going to help Julie if I started a war of words with the guy right then. The UK NHS system whilst excellent is so because of committed teams who work long hours for often little reward. Bear with them if they get snappy with you and above all follow their requests. 

 

Andy..

Back at Arrowe Park Hospital

So… you still want to know about fluff?  hehe.. sorry, I’m keeping you waiting a little longer; my next blog should introduce fluff to the world.

We made it home from Lancaster Royal Infirmary and was I pleased to see my bed!

Monday Morning, 15th July, we woke, Andy and I were talking as we lay in bed, suddenly I felt ‘the flip about to start’ an instant feeling of panic! not being able to stop it, I was feeling so out of control.

At the first mention of it Andy had grabbed the phone and had dialled 999 and was asking for an ambulance, as he talked and comforted me the sensation faded again but the heaviness in the arm remained, the operator told Andy a paramedic had been despatched and an ambulance would be following, Andy ran down stairs and opened the front doors ready for the medics and ran back up to me. Thankfully we’re less than two minutes from the ambulance station so whilst the emergency operator remained on the phone to Andy he was (now it sounds hilarious) stepping into Jeans trying keep hold of the phone, keep his balance, and look out of the window looking for the paramedic whilst comforting me!

Andy confirmed to the operator the paramedic was here and ended the call instructing the paramedic through the open window to come straight up. In no time I was having sticky pads stuck all over me, I was connected up to an ecg, was also having my temperature and blood pressure taken. The paramedic was using his phone and radio. He wanted me admitting to hospital having listened to our description of what had happened and on top of yesterday’s episode.

20 minutes(!) later an ambulance arrived, the paramedic had been trying furiously to find out what the delay was and was being told there was one (Ambulance) on its way. To this day we don’t know what happened, the crew explained they’d been called on to the peninsula (Wirral is a peninsula and shares its services with Liverpool on the north bank of the River Mersey) to attend a male patient but were stood down on route so having just exited the Mersey tunnel they turned around and headed back to Liverpool only to get a shout to come to me! They were badly briefed for they were still expecting to see a male patient! Note to ambulance crew Woman------->

 

The paramedic briefed the ambulance team they too felt that I needed to be in hospital however I was almost back to my old self, just the heaviness in my arm again and of course I was worried, I actually walked to the ambulance very slowly.

The ambulance crew were brilliant they warned me we would be travelling with ‘blue & two’s’ as in sirens and flashing lights, apparently in the cases of suspected strokes its standard protocol. Andy stayed behind to lock up then follow us.

I was straight in to A&E to be triaged; Andy arrived just in time to meet the Doctor who was thankfully the Doctor I’d seen on the Wednesday before on my very first admittance. He examined me and then explained he felt these were not TIA incidents and felt the apparent meningioma was part of the problem. He had me moved back on to the stroke ward again whilst more tests took place and I was kept under observations. I had one or two more flipping incidents (Struggling to remember some detail) on the ward but I soon recovered back to ‘normal’. I’d been put on steroids by now but just a low dosage as a safety precaution. I remained in hospital until Thursday 19^th  when it was decided I need to be referred to a neurosurgeon for they were now convinced these were not strokes/Tia’s but still adamant they couldn’t say for definite what the scan showed if it was in the meninge membrane or if it was actually on the brain. Mid-afternoon I was given all my meds including a new one to start taking from the next morning, a drug medically known as Keppra however,  quickly renamed by me as ‘Fuzzy drug’. ‘Fuzzy drug’ is an Epilepsy drug (no I do not have Epilepsy) to help control seizures.

Very mixed emotions at this point, I think I’m relieved to know I wasn’t having mini strokes but also concerned by the thing in my head. Well we said our goodbyes and walked off the ward. We’d walked to the elevator but I began to feel as I now call it whooshy headed, (you’ll get used to my quirkness soon teehee) I felt off balance and my arm was getting heavy again. There were seats close by and we made it to them, after a couple of minutes I said to Andy “lets go”. We made it to the elevator, the door closed and as we descended the one floor I felt shaky again, part of me wanted help, part of me wanted to get out of the hospital. Andy was extremely concerned he had me sit down, I was panicky. Andy called the stroke ward and sought advice he explained where we were in the Hospital. Although discharged they told us to wait where we were and one of the nurses came down with a wheel chair and took me back on to the ward where one of the Doctors saw me Still at a loss he told me to take my first dose of ‘fuzzy drug’ now. Within half an hour I felt better and this time was wheel chaired to our car. Once home I rested.

Andy and my closest friends suddenly became guardian angels; I wasn’t being left alone whilst Andy went to work. It seemed the fuzzy drug was having the desired effect; I wasn’t having any more ‘flipping’. I was feeling much better and our lives needed to go on irrelevant.

So in just over a week, I’d had three hospital admittances to two different hospitals, two ‘blue light’ ambulance journeys, three brain scans, around six tia’s/flipping episodes, two new drugs and a partridge in a pear tree and still no one knew for sure what was wrong with me…..

Worrying times

Why 'Fluff's Journey' you've been asking, hehe, all will be revealed soon.

So Andy has explained the scary event in my arm and hand with them doing their own thing that resulted with me ending up in A&E, I truly wasn’t overly concerned at this point but when they started suggesting TIA’s as I had spent a huge part of my working life as a healthcare assistant I realised I’d probably been 'lucky' but equally as I knew I was heading for the stroke unit for observations and follow ups I was beginning to feel something wasn’t right,  I knew though that I was in the best place for now.

Overnight I had a relatively peaceful night but it was a hot summer and hospital wards aren’t renowned for their air conditioning and stroke wards are often full of the elderly who are confused & frightened too, it can and it was in this case a noisy combination bless them.

Next morning I was sent down for a brain scan, later that day I saw consultants and doctors none were unduly concerned beyond still believing I’d had a TIA they decided though to  keep  me in for another day. On Day two the team said they felt  on checking my scan the definition wasn’t clear and so wanted to arrange another, they felt I was well enough to discharge me asking me to come back the next day, for the scan and they’d then be in touch with the results. I went home and slept well in my own bed, there really is no place like home! Saturday morning we were back at the hospital for the scan and we’d already had a social commitment meaning an overnight stay in Bolton. I felt fine so we saw no reason not to go. We had a great night but I was tired by about ten p.m. so we retired to our room and I had a decent night’s sleep. Next morning, we had a leisurely Sunday breakfast and we decided to drive the 50 miles to Morecambe where one of my brothers was then living to catch up with him. After an hour or so we said our goodbyes. By now I was starving and ‘Ben & Jerry’s’ as I had nicknamed Franky & Bennie’s American restaurant was just around the corner  & we headed there for lunch.

We’d been in the restaurant long enough to order our food, drinks and to have eaten our first course. Andy & I were romantically holding hands across the table, I suddenly felt my arm going into its flipping mode again, OMG I was petrified, I was shouting help me, help me, please I begged out loud I don’t want to have a stroke. I was frightened, Andy yelled at the Restaurant Manager to call for an ambulance and was trying to console me, from nowhere, well an adjacent table actually, a young lady came over, she was it turned out a GP & she calmed me explaining I wasn’t having a stroke, by now Andy was also dialling 999 and was talking to the emergency operator, 3 minutes later an ambulance was outside and paramedics were taking control of the situation. In minutes I was in Lancaster Royal Infirmary A&E department where an excellent (but typical of the NHS) but overworked and over tired Doctor began to do tests on me. He sent me for a scan and confirmed there was something showing, their Radiographer was suggesting it was likely to be a ‘Meningioma’ basically a benign tumour more common than we think, that sits on the membrane between the skull and the brain (Click on the link below for more Meningioma information) People can have these for years and not be aware of them and live perfectly well. The A&E team kept me under observation for around 6 hours and during that period I was fine and showed no signs of further problems. The team felt there was no reason to admit me and so I was discharged, I really didn’t want to be in hospital miles from home, I wanted my bed………

Meningioma Information

 

PS. Despite the A&E Doctor comment (that Andy added, he'll explain his reasons for this in one of his posts) we both felt I was at all times in very capable  & caring hands both of the Doctor & of the Nursing team at Lancaster RI A&E, my sincerest thanks to them.