I’ve been trying to write this post for so long, but I have no clue where to start, and honestly, I don’t remember it all. I wanted to write a diary during it all but it was the last thing I felt like doing when I felt so unwell. I was warned by the specialists about how poorly I’d feel but I didn’t
believe them! I had all of these plans to write my blog and bake cakes each week for all the staff...I didn’t do it once! So I apologise Kam (Lead GTD Specialist) you were right - again!
It’s quite a long post, and I’ve even split it over 2 parts!...
The day I got blue lighted to Sheffield, Luke’s Dad got a bible verse during his morning prayer time. At this point I hadn’t been diagnosed with cancer, the worst case scenario was possibly surgery in Walton. The verse was this:-
“This sickness is not unto death, but for the glory of God, that the Son of God may be glorified through it.” John 11:4.
After arriving at Weston Park Hospital in Sheffield, I met my Doctor, Dr Winter, who explained everything so clearly and calmly. And as I explained in a previous post, with the cancer being present on the bone of the spine, they could only treat it as ‘possible choriocarsinoma’ until they were sure otherwise. He actually came in on the Saturday, his day off, to see me! I knew then I had a good doctor!
Dr Winter specialises in this area of cancer that falls into the gestational trophoblastic disease bracket, which are cancers formed in the placenta. His team of specialists are lead by Kam and the team include; Annie, Jayne and Sarah. We spent time with all of them whilst I was in at the beginning but when I made weekly visits back to Sheffield, I saw mainly Kam and Sarah. I was also lucky enough to meet some amazing staff, I wish I could name them all. Every one of them made an impact on me, they all made me feel like I was a queen. (Wesley took a shine to a gorgeous nurse called Amy, who kept feeding him chocolates over Christmas! Amy if you ever read this - Wesley shouted your name whenever he walked back through your ward!).
I was so calm (for me!) when I first got there. I think had I have known I was going to be there for 3 weeks I would have reacted differently!
There were so many blessings whilst we were in Sheffield, throughout this whole experience in fact! (maybe another time I will share lots more). But I think the biggest one was Luke’s parents dropping everything and booking a holiday cottage for the 3 weeks so Luke and the kids could be near me and so they could help look after the kids. My friend Anna found the cottage, a price was agreed but at the end of their time there the owner only charged less than half of the price! Then my Father in Law’s boss paid him for the time off work he took when he presumed it was unpaid. I’m so grateful for them doing this for us. I got to see my gorgeous children and Luke every day.
So many of Averly’s first moments were in that hospital room, I get a lump in my throat at the thought. I remember the smell in that room, the lighting, the temperature. It felt like a second home. Some friends of ours (who went through their own valley but can now testify the miracle God performed) gave us a list of bible verses they read every day during that valley. Luke pinned that list up onto the wall and we also prayed everyday. If I close my eyes I can see the list pinned up in the corner of the room.
One of the weekends, Levi and Amy came up and stopped over. We decided on the Sunday that we would head to the museum which was just down the road if I felt well enough. We must have looked a right strange bunch, at one point I was sat in a wheelchair whilst pushing the pram with Levi pushing me, whilst Luke and Amy chased after Wesley! It was comical but I still can’t believe I had to have a wheelchair, I hate that I was incapable of walking such a short distance. I hate that I was so reliant on people! As I’m typing this now I think how bizarre it all is - that this actually happened. When Wesley was born, I made sure our pram was a durable one and we walked everywhere. That was the plan with Averly too, but there you go. The devil comes to steal, kill and destroy, and he gave us a fair go. Either way, the museum trip was great fun. Wheelchair or not, it wasn’t stopping me spend time with my favourite people.
I don’t know about you, but I love little traditions. A couple of days after Wesley was born, we grabbed a Starbucks and went for our first walk as a ‘new family’ . He was born in October, (both Averly and Wesley are Autumn babies) so it was cold and crisp, a perfect day to wrap up warm and sip pumpkin spiced lattes. I knew straight away I wanted to do this exact thing when we have another baby but with Wesley too. But with the ‘sciatic pain’ I had, this didn’t happen. Then obviously, the whirlwind struck and it wasn't something I thought we’d get to do. Where Weston Park is located, it’s right in the heart of the university district, so not only a university but a children’s hospital and another general hospital...it’s very busy...all...the...time! Parking is horrendous (thankfully not something I had to worry about, but I felt awful still!). There is also the museum and a Starbucks. So when Averly had a blood test booked in the children’s hospital, which is a 3 minute walk (200 yards to be exact!) down the hill. I jumped (I wish!) at the chance to take her with Luke. We walked the 200 yards , yes - WALKED, and then to the Starbucks next door. Now this may not seem like a big deal. But this was the first time walking properly in a while, it was down a hill, then back up the hill, and I was still in a lot of pain. So this was a big victory. Both me and Luke sat in Starbucks and nearly cried, well I did cry a bit! It was Christmas, we were listening to Christmas Carols whilst sipping hot chocolate whilst Averly slept in the pram. We felt a tiny bit normal. No-one knew I had cancer - unless they looked at my hospital wristband. The only thing missing was Wesley. (Averly’s bloods came back fine if anyone was wondering! It was a standard check that the cancer hadn’t spread to her).
Before we headed home for Christmas we were telling Sarah, one of the GTD specialists that we never got to take Wesley to see Father Christmas. Thankfully he was only little so wouldn’t understand anyway. Sarah then arranged for the Museum to keep their Santa’s Grotto open a tiny bit later one day just to squeeze Wesley (and Averly!) in! It was one of the most magical experience, they gave both children wrapped gifts, plus an extra little reindeer soft toy each which they were told was from Rudolph! And as we walked out of the grotto and Santa left (to go back to the North Pole of course) he started singing, so as we are walking away all we could hear was “you better watch out, you better not cry...” it was a goose bumps moment and the first time I’d felt Christmasy! It was so incredible and will forever be grateful for Sarah and Weston Park Museum for organising such an amazing experience. I’ll add the link to the museum for anyone who may want it.
I can’t even tell you the amount of times I was poked and prodded. I don’t think anyone likes needles, but I really wasn’t keen, I’m a little less scared now! A part of my treatment was 6 intrathecal treatments which is a needle in the spine where they drain off a bit of fluid then inject a small amount of chemotherapy. Which actually seemed a lot easier after a lumbar puncture I had before I started treatment! I don’t really know what happened during that procedure but It’s one of the few times my anxiety rocketed - they had to get Luke to come and hold my hand!
Another procedure I had to have was the insertion of a Hickman line, a semi permanent catheter in my chest. This is a straight forward procedure but in a theatre environment. Now I think my imagination ran wild and I got a bit stressed out and gave myself low blood pressure that morning, but after a bit of time calming down it was decided I was ok to proceed and headed over to the Royal Hallamshire Hospital across the road, with a member of staff chaperone, to get it inserted.
So there I am, sat in my wheelchair in my new jarmies and dressing gown from my Dad and Step-mum, in a waiting area with multiple day patients. My chaperone had gone to see what the wait was, when there it goes again - I felt my blood pressure drop and an instant unwell feeling came over me...within a split second, vomit everywhere. Every-where. In my dozy, medication filled state I couldn’t even get up out of my chair. All I remember hearing was “ooooh you poor Dear, you did well not to get much on you”. It was at that point I looked down and wanted to scream “ Thanks Brenda - it’s ALL on me!”. Which it was a good job I didn’t because I doubt her name was actually Brenda, and technically I did get some on the floor too. But hey, with that out my system I felt great, and ready to get a semi permanent tube stuck in my chest!
The procedure wasn’t actually that bad. The worst part was the anaesthetic injections in your neck and chest. The rest was mainly pushing, pulling and tugging. I think the worst bit was getting back to my room and seeing it for the first time. This was all prior to chemotherapy starting so when I saw it hanging there in my chest, it all became a bit more real. I was starting to feel less and less like me. Like the more that cancer took over, the less I was Danielle. I was going to become this new sick person that people made that noise when they saw me “Awwwww”. Or that face that people made, the raised eyebrows and sad eyes. I hated it, I didn’t want to be known as sick, I refused to accept it and didn’t want anyone else to either. Five minutes after getting back to the room and cleaning up after the vomit incident, my Dad, Step-mum and Brother walk in the room. I just said “I’m going to cry but it’s just that I’ve only just seen it - I’m not sad, it’s just new to process!” As I blubbed on my step-mum’s shoulder.
Which was all a waste of time because 2 weeks later I get the thing caught under my fat tummy roll and pulled it out...
I’ll be doing a post on side effects and the treatment plan I had, but for now I’ll add about how many tablets you have to take..I’m not a tablet taker - I’d rather struggle if ever I had a headache! But at one point I was taking about 22 a day, I was rattling!
I’ve added a photo of me and my Dad with some of the Sheffield United FC players who came to visit the ward the day before I went home. It was day 2 of treatment so I hadn’t showered, because its impossible to shower when your hooked up to chemo! A strip wash with a flannel just isn’t the same. So that means I had smelly jarmies on which were odd as every thing else needed washing, oh and they had a coffee stain on them too! Greasy pig tails and zero make up as well. It’s a good job Luke loves me for what’s on the inside because I’ve seriously let myself go in recent events!
My Dad had come and stayed ready to take me home for Christmas. I remember getting into his car and saying how God fulfilled his promise and got me home for Christmas (from Sheffield anyway - little did I know I’d be back in our local hospital on Christmas Eve ! That’s for another post though!).
I could go on and on. And I’m sure that you could get lots of different information from the people closest to me who where there, but I’ve tried to summarise it as best I could. That 3 weeks felt like a life time that went really fast, it was a blur but I have so many memories, some good, some bad. I won’t ever forget it, I think I met almost every member of staff! And the regulars on my ward made a difficult time a lot more bearable.
I’ve had to split this over two posts so you didn’t feel you were reading a book! Even though this one is still a bit too long! But on the next part I’ll add the bible verses that were given to us during this time. They may not mean something to everyone. But they mean everything to us, they helped get us through a very difficult time.
So, seen as “This sickness is not unto death”, I will make sure the Glory of God shines through me and my family every day.
Ps..on the way home, we had the biggest McDonalds. And whilst I was scoffing my face, Luke had gotten home before me to a vomiting dog who had stunk the house out. Safe to say he was happy to see me home!