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...