A Little Ditty...

Friday 12^th July 2013

For my latest blog post I have decided to write a poem, something different to sum up my time on the Young Person’s Unit at the QE Hospital and describe the nursing staff.

 

This is a poem about the nursing staff,

A lovely lot who make me laugh,

Professional yet caring, they sure are a busy clan,

They make my time there the best that they can.

 

Calm and composed, Dr Sarah is head,

Once checked in, I’m shown to my bed,

She gives me the once over, looking at my body,

An expert is her field, her work is never shoddy.

Del the staff nurse is forever on the go,

But she always finds time for a chat when you’re feeling low,

I find her entertaining; her stories are the best,

I have her running ragged, she never gets a rest!

The lone male nurse is Scottish Mike,

He always walks to work, doesn’t own a bike,

Continually super efficient, never running late,

I’d like to see him in a kilt; I think he’d look great!

 

Then there’s Sarah Turley, the organiser of fun,

Tuesday is the breakfast club and she goes on the coffee run,

Her personality is bubbly; she has everything under control,

We’ve even got a juke box, so everything’s rock n roll!

There’s also Laura and Elizabeth,

Charlotte and Maddy too,

Really too many to mention,

So those were just a few!

I hope you’ve enjoyed this little ditty,

About how good the staff are at the QE,

I think Florence should take note,

And make me a cup of tea!

I’m Too Sexy for My Shirt

Sunday 23^rd June 2013

I’ve finally managed to get my iPad back from Flo (an extremely difficult feat it has to be said), so able to take back the reins on my blog this week! It’s been another busy few weeks at the Thomas HQ since the last post and as most of you will know, has included two trips back home to Wales.

I was back for a fashion show event, ‘Fun, Frocks and Fizz’ hosted by local businesses at The Metropole Hotel, Llandrindod Wells. It was such an overwhelming afternoon, with the local community coming together to support my family and I, for which we are so very grateful for. On behalf of my family and I, we’d like to thank everyone involved, those who attended and/or sent donations. There was such a lot of people there, we can only apologise for not having a chance to properly catch up with all that we wanted to. Everyone worked so hard to make it a success and it was a thoroughly enjoyable afternoon. A complete mix of emotions really, from the laughter at the boys on the catwalk, through to pulling of the heart strings from Aunty Sue’s speech and to seeing my sister Becca in a wedding dress!

On Monday morning we left Builth to head back to Birmingham Hospital, for my tenth session of chemo. We dashed in the house with our bags, quickly repacked and were once again on our merry way to the QE! Whilst settling in during the afternoon, Flo exclaimed “Who’s that shouting all the time?” and began playing detective, investigating out of the window. She couldn’t decide where it was coming from or see anybody, so decided it must be workmen. This went on into the evening and after a night’s sleep, began once again. The next day my friend Libby came to visit me and Mum quizzed her as to whether she could hear it! They both listened intently, telling me to be quiet on several occasions! In true Libby style she watched and listened, head out the window, ear prised against the wall and finally the pair both got on the floor! By this time they had decided it was a cry for help and were scared that somebody may be trapped! The voice was calling, “Let me out, you’ve got to help me!”

Sherlock and Dr Watson couldn’t contain their worry any longer and made their concerns known to the nursing staff. They however, dismissed the idea that anyone could be trapped in the air vents, but the undeterred detectives were not convinced and set off donning tweed coats, pipe and magnifying glass – ok well not quite that farfetched, but you get the picture, taking the lift to the lower hospital floor to probe further into the mystery. That night the noise appeared to stop and it was finally decided that the victim had either escaped or was dead; either way at least we were in for an undisturbed sleep!

Around a week later Flo and I headed back to Builth once again for the Presentation evening. A gobsmacking £2,850 was presented to the family and I, which will genuinely make a huge difference. Libby made a speech on my behalf to thank the committee and I’d just like to take this opportunity to thank her and all involved once again.

This weekend it was my turn to return the favour and support Libby with her 24 hour Bike Challenge. I attended Rockingham Speedway, Corby, where she had to ride around the track with three other colleagues from the M&S Kingsditch store in Cheltenham, to raise money for a number of cancer charities. Over 1,000 employees took part and the day was a great success, with Libby having risen over £600 currently. If you’d like to donate money her link is still active and can be found at:

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=Kingsditch&isTeam=true I know she’d really appreciate anything you can give, however big or small and I’m so proud of her amazing achievement. Well done Libby!

My other friend Sarah has also recently completed the ‘Race for Life’, back home in Wales. I’d like to give her a mention to say a BIG well done, an amazing achievement also!!

I’m back in hospital 1^st July for my 11^th session of chemotherapy – counting down now, only four to go!

From Flo’s Perspective

Tuesday 28^th May 2013

Well, we’re nearly at the end of May. Can’t believe how far we’ve come on this journey and there is light at the end of the tunnel - although I thought somebody had turned it off at some point to save electric! Only five sessions of chemotherapy left out of the fourteen, each one another step nearer for my return home. I suspect a ‘good bottoming’ will be required after leaving Gary in charge of the feather duster! (For those who don’t know, this means a good clean and nothing rude!)

Since moving to Birmingham back in November, we have said numerous times it was the best thing we could have done under the circumstances. A swift count up adds up to fifty nights in hospital and we’ve lost count of how many outpatient appointments there’s been so far. On occasions we’ve been at the hospital until late and thank god there’s no two hour trek back to Wales, fifteen minutes and we’re home and dry.

Watching your daughter go through such gruelling treatment requires an inner strength and commitment I didn’t know I had - (although having been married to Gary for 35 years has given me good practice!) However, out of the two of us I think Rhi is the stronger. She never grumbles or moans about any of the treatment she has to endure. I won’t say she hasn’t shed a tear, because we both have. Sometimes the days have been long and dark (and the nights too when sleep evades you and your mind starts to wander and worry what the future will bring). But morning comes and I think of Builth High School’s motto of ‘Carpe Diem’ meaning ‘Seize the Day’ and get up and face whatever the day has in store.

Looking back at some of the lowest points it’s been hard to always stay strong and positive. Standing by the bed when they took off her bandages after her major operation, I didn’t know what to expect and neither did she. Things were worse than I thought but with time and care things have improved greatly in that area. Radiotherapy was also particularly heart-wrenching. Sitting there while she was left alone in that room when the radiation was being delivered, I often found myself to be quite emotional. Her hair loss has probably hit me harder than it has her. Thinking back to all the times she used to love doing her hair – whether it be blonde or red, she never left the house without it being immaculate. Her fertility, well I try not to think about it. She’s done what she can in terms of freezing her eggs and hopefully one day I’ll be a Nan! But from a selfish point of view I think as long as Rhi’s alive it doesn’t matter whether she has any children or not.

The Young Persons Unit at the QE has become our second home. I have met many mothers and fathers, who like me, have a story to tell about their child. We all agree that although life is tough, they seem to have such courage and determination, enduring any treatment that’s thrown at them, facing life with great optimism and hope for the future.

Before I leave you, I’d just like to say that it’s not been all doom and gloom. I think most days we have found something to laugh about – whether it’s been her new nickname ‘Argos’ (because she says she looks like the aliens in the advert and there’s now the added Olly Murs reference!), the many bush tucker eating trials she says I make her endure or wondering whether we’re in the right clinic for radiotherapy when we see two men walking around with women’s handbags and thought perhaps we were in the gender change department?! They say laughter is the best medicine and I’m sure they’re right, whoever they are! It’s certainly helping in Rhi’s journey, that’s for sure.

 

Keep Your Hair On!

Sunday 28^th April 2013

The last time I wrote a blog post, I was about to go into hospital for my seventh chemo session. I’m pleased to say the session went ok, with best friend Libby there to support me while Flo went back to Builth for a night. During the time in I also started my radiotherapy. I’m taken down to the department in a wheelchair by a porter, with Mum having to scuttle alongside to keep up with his fast pace of around 90mph! On the second day of treatment one of the Radiographers said “Oh I see you’ve bought a friend with you today?” (Meaning my drip) To which I replied “Oh no that’s just my Mum!”

I have now completed fifteen sessions out of twenty eight. The process of having the radiotherapy is fairly simple, with me wearing the mask (which I explained about in my last blog post) while the radiotherapy is given and it only lasts a couple of minutes. I have had to use aqueous cream on my head a few times a day to prevent it from becoming sore, which is a common side effect of radiotherapy. Another possible side effect can be short –term memory loss....now then what was I saying?!

Whilst recovering after the chemotherapy, both Flo and I nearly ended up back in hospital at A&E! One morning whilst taking a shower (which is positioned over the bath) and lathering up, I slipped and fell hitting my head in the process! Upon hearing the commotion Flo called upstairs to check I was ok, but there was no answer as I couldn’t hear her because of the sound of the shower. She dashed upstairs in a panic, thinking I must have fainted, nearly having a cardiac arrest on the way! Luckily I was ok apart from a sore head and perhaps now a red face from admitting I’m a bit of a clumsy fool!

Last week I had my wig cut and styled and I know a lot of you have seen it via Facebook. I was overwhelmed by the amount of ‘likes’ my picture got and it gives me confidence to know it looks good! I was advised by Nicky (the hairdresser) to keep the length long and he suggested I looked more of a ‘structured’ type of person, so to go with a Jessie J style blunt fringe. I told him she’d already copied my style by having it all shaved off! I was happy to go with his advice as he said it’s quite different cutting a wig to normal hair. I’m really pleased with the outcome and it makes it so much nicer and easier to go out, especially in the evening time. With this in mind I decided a celebratory night out was in order and my Uni friends Lisa and Dani came down to Birmingham for the night. We headed to Brindley Place for a meal at Piccolino’s and to Pitcher and Piano and Walkabout for a few drinks and a boogie! The night was really good; especially as it was the first proper night out I’d had since September!

Lisa and I also went pottery painting last week, as we fancied trying something a bit different. It was actually really good fun and very therapeutic! You could choose from an array of items to paint including plates, bowls, trinket boxes and cups and saucers. We decided to both select plates and used floral stencils to create Cath Kidson style designs. I’m picking them up next week when they’ve been glazed and fired and would love to try this again in the future! Flo took this opportunity to escape once again and headed into town on the 99 bus! I’m always laughing at her fascination with buses here in Birmingham; I guess she’s never seen so many as it’s quite different to Builth where you only have one every two hours!
 

In the last couple of weeks my sister Becca and her boyfriend Luke have visited, along with my Dad which has been lovely. Mum’s friend Sandra also came up for the weekend and we all enjoyed a canal boat trip over Brindley Place on a lovely sunny day. My former boss Matt (from George) and his wife Josie also called to see me last Sunday and we spent a lovely few hours catching up.

 

The London Marathon has also taken place since I last posted, so I’d like to take this opportunity to congratulate Rachel Williams on her fantastic achievement, completing the race in five hours (with an injured hip) and raising over a £1250 (+ gift aid) for Teenage Cancer Trust and the same for her Mum’s chosen charity Pulmonary Hypertension Association. Thank you to all those who provided sponsorship, I know the money will be greatly appreciated.

 

I can’t believe it’s nearly May and I’ll have been living in Birmingham for around six months! Although we’ve made friends with a few of the locals, our neighbours clearly don’t think too much of us. The occupants of the two houses opposite have up sticks and left and the neighbours next door are moving to Australia as soon as they sell! Think it must be something to do with Flo’s singing or perhaps it’s her neighbourhood watch tendencies?!

Flo and I are glad the winter is over and the nights are getting lighter, which makes going through all of this so much easier. Tomorrow I’ll be going back into hospital for my eighth chemo session. That’ll be eight down, six more to go.

 

Easter: The Only Time of Year It’s Safe to Put All Your Eggs in One Basket!

Sunday 7^th April 2013

Unfortunately I started writing this blog post from my hospital bed! The week before last I had to be re-admitted following a high temperature. It all started a week last Monday - my temperature was high that morning and when I came into hospital to get checked out, bloods were taken and analysed, revealing my hb levels were low so I required a blood transfusion. The next evening I was at home feeling fine, when I checked my temperature (which I have to do twice daily) and it was up once again. Into hospital Flo and I dashed as having a high temperature can be a sign that you’re neutropenic (when your immune system is at rock bottom) and can be life threatening. Fortunately this wasn’t the case for me this time, although I had to have fluids, antibiotics and paracetamol to bring my temperature down as I may have had an infection. A chest scan I had had a few weeks previous had revealed that there was something showing on my lungs, which may have been the beginning of an infection. Prior to having tablets to clear this up, the doctors were unsure as to the cause of my temperature and decided that I should have my PICC line out incase this was the source. It turned out it wasn’t and I once again had the pleasure of having another PICC line put back in my arm. However, this is much better than all the cannulas I had to have put in over the 10 nights I was in hospital and all the prodding of needles to take blood at 5am each morning!

I’m back home now on weekend release, as temperature has finally come down. I’m due back in tomorrow for my seventh session of chemotherapy. I was hoping to go back to Builth Easter weekend to catch up with friends and family, however plans for this had to sadly be cancelled.

While I was in for my sixth session of chemotherapy, I went down to the radiotherapy department to be measured and fitted for my mask. The mask is something I have to wear during the sessions to protect my face from the rays. My oncology consultant has now decided that I need to have ‘electron’ radiotherapy, which will be twenty eight sessions in length, beginning 8^th April. This was supposed to start on the 2^nd April, however couldn’t commence until my temperature had stabilised. Using electrons means there’s less chance of the rays penetrating my brain, whilst still being effective on the areas of skin on my head that it needs to. I also had some positive news whilst I was in - my head and chest scans have come back all clear of cancer, which was a big relief.

Becca, Dad and Luke came up for her Graduation on the 15^th March and although I couldn’t attend, they all came to visit me in hospital, along with her friend Jazz. Becca had a great day and it was lovely to catch up with them all.

Flo and I attended Crufts a few weeks back. We had a great time, watching some of the agility events in the main ring and meeting some of the French Bulldogs and their owners. I want a dog more than ever now!

My friend Dani and I went to the Olly Murs concert on the 12^th March. We had a fantastic time, as he put on a great show! He was supported by The Loveable Rogues who were on Britain’s Got Talent and a girl called Titch who were both really good.

 

I was booked into the Manchester hair salon last week to have my final wig fitting. I was hoping to get it sorted before my radiotherapy. Again, this had to be cancelled because of my high temperature so will have to re-book for after the radiotherapy now, which looks like it will be May time.

Hope everyone has a lovely Easter and received lots of eggs! I’ve already received some from my lovely friend Sarah! I can also reveal that Sarah was the mystery person behind the anonymous package I received in the post around Christmas time! This came to light a few weeks ago when I was using my notebook and telling her the story of how I didn’t know who it was from!! For Easter I was also treated to a few lovely cards and presents from my Aunty Sue (Pooky to us). She bought me lots of lovely pamper gifts and lottery ticket and scratch card. I won £5 on the scratch card and have promised her half the winnings!! Haha

Can I just also take this opportunity to thank Rachel Williams for running the London Marathon, to raise money for Teenage Cancer Trust. The marathon takes place in two weeks time and I’d like to wish her all the best! If you’d like to make a donation here’s the link: http://www.justgiving.com/Rachel-Williams20 or alternatively if you’re in Builth then my sister and Rachel both have sponsorship forms. Thanks all.

 

When the Going Gets Tough, the Tough Get Going

Tuesday 5^th March 2013

It’s been a few weeks since I’ve posted last and a lot has been going on! The trip home to Wales was a great success! Ebony’s 18^th birthday party was so much fun - catching up with family was lovely and mine and Mum’s fancy dress outfits went down well. Wanting a costume which required a wig, I opted for Lady Gaga (outfit based on the Telephone video). Mum went as the Queen, corgi in tow – I think you’ll agree the mask wasn’t even needed! Mum could definitely be a look-a-like – new career maybe?! The rest of the weekend was also a lot of fun, catching up with friends over lunch and in town.

I had a meeting with Mr Spooner the Monday following. I’ve been told that 14 doses of chemotherapy along with 25 sessions of radiotherapy are required. Not a pleasant thought, but one that I’ve accepted – if I need it to get through to the other side of this then I’ve got no choice but to go for it. I have a fitting for my radiotherapy mask next week and the treatment for this will commence a few weeks later. As for the chemotherapy, my 6^th dose is a week Wednesday. After this the doses lower so hopefully they’ll be a little easier. I was in hospital again last week having 2 bags of blood as my levels had dropped, hopefully that won’t happen as often when the doses are adjusted.

My CT head scan went well on Monday – I got to the clinic and sat down in the busy waiting area, before promptly being escorted through to another area. This was much quieter; I presume it was the VIP lounge!! Results from the scan are to follow shortly. I’m also waiting on an appointment for a CT chest scan.

On a lighter note, I’ve had lots of visits from friends and family these past few weeks, which has been lovely. A few family friends came from home including one of Dad’s work colleagues, who even bought me the local paper to catch up on the news of Billy Wells! My auntie and uncle also came down from Leeds to spend the day with Mum and I, a lovely chance for a family catch up J

My friends have continued to be supportive – a few came over last weekend and we all had a great time visiting The Custard Factory’s vintage fair! We all enjoyed having our nails done and shopping for some great vintage clothing. We also enjoyed seeing Safe Haven at the cinema – a lovely rom com I recommend to all the girls out there! I also dip dyed my friend’s hair successfully - a new career in the beauty industry for me maybe?!

More pampering happened yesterday at the ward when the Body Shop team visited! Since I’d already had my nails done it was time for a foot scrub and pedicure – pure bliss! A few days rest and chill at home now until Friday when Mum and I have decided to visit the NEC to see Crufts! Look out Dad a new French bulldog could be arriving at a home near you sooner than you think ;)

This weekend I will be heading to New Street, having lunch out and scouring the shops for Lonely Planet guides courtesy of my cousin Lou! Bring on the travels! Can’t wait J Then Mother’s Day....well can’t say too much but card and gift all sorted! Then Olly Murs concert on 12^th March and finally back in for the next round of chemo on the 13^th March. Over and out for now folks!

Chip Off the Old Block

Friday 15^th February 2013

I went in for my 4^th session of chemotherapy on 30^th January. It started off with my usual checks, including having my weight taken. This time the nurse came to get me whilst Florence and I were stuffing our faces with cream cakes! This session was once again demanding, not just for me but for Flo too, even the machines were calling for her attention! But a visit from Jimmy Carr brightened up one of the 5 days. I even managed to put on some make-up to meet him, although the pyjamas remained, which didn’t seem to bother him! He was a nice guy and made us all laugh; he even commented that he liked my personalised phone cover!

A few days after my discharge, we decided to attend the yoga class after recently joining the gym. The class was enjoyable except for the part where I felt sick! I let Flo think it was the chemotherapy, although I secretly thought it was more likely her quiche! I made a mental note to find out where the toilet was for next time! However, there was to be no next time as the following day when we returned for our induction, I was told that because of the treatment I was receiving I wasn’t allowed to exercise. I was disappointed but understood their reasons; Mum was pleased that her ‘Just Do It’ t-shirt was to never see the light of day again! Upon leaving the premises an ambulance promptly pulled up outside and Paramedics went it. We thought perhaps it was a bad omen. I decided that if the gym wouldn’t have me, my old friend Toby Carvery certainly would, and promptly went and had a full roast dinner and ice cream dessert!

As the week went on I continued to feel poorly, even feeling quite weepy one of the days. Mum and I went for a walk but I was out of breath and also had a nose bleed. Reporting this to the nurse last Monday afternoon, (whilst at the hospital for my PICC line) he suggested a blood sample be taken to check my platelet count. After several hours he returned with the news that they were down to 7, with the usual count being in the 100’s! It was no wonder I hadn’t felt well and meant I required a bag of platelets through my line to carry me over 24 hours, plus two bags of blood the next day. Following this I felt a lot better and was allowed home.

The follow up article has been published in the B&R and the story in Pick Me Up entitled ‘My Patchwork Scalp!’ has also been in print. I have been in contact with a lady who raises money for Ewing’s Sarcoma research at Leeds University Hospital, following her son’s diagnosis 12 years ago. Once the money from the article is sent through, I plan to donate the money to this charity.

I had a visit from two of the girls from work today, Sarah and Lindsay. It was lovely to catch up with them; they even bought me some beautiful flowers, chocolates, cakes, fruit and a photo frame with ‘RHI’ in it. I think they were pleased to see how I was doing but perhaps more pleased to finally meet the famous Florence who even told them that I was definitely back to my old self today bossing her around to tidy up before their visit! I honestly don’t know what she means......!

Tomorrow I plan to make a visit back home to Wales! I can’t wait as this will be the first time I’ve been home since my operation last October - it will be a good chance to catch up with friends and family. I’m also assuming all my valentine’s day cards and gifts will be there, as I only had one delivered to Birmingham (all be it from Olly Murs aka Libby Adams!) and that was a day late! The real reason I’m going home is to celebrate my cousin’s 18^th birthday, at her fancy dress party. Florence and I have been busy preparing our outfits and I’ve carefully selected a costume which requires a wig! I don’t want to reveal who I’m going as yet, but look out for the next blog where I’m sure I’ll have lots of photos!

On Monday I have an appointment with Dr Spooner to discuss my treatment and whether more than 6 sessions of chemotherapy will be needed. My next session of chemotherapy starts next Wednesday. I also have an appointment in March for a CT scan of my head – I’m not quite sure what they need to do this for, but Flo says it’s probably to see whether Mrs Potato Head has any filling! I told her there probably is no filling because I’m a chip off the old block! On that note I’m off to pack my bags ready for the weekend! Hope you all have a good one J