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.