Our first, rather large blog..
Hello again, it’s Willberry!
Hannah and I have decided to write a joint blog for our website to keep you up to date in a more detailed way that is totally up to you when you follow it and when you catch up. There’s quite a lot going on in this one as a huge amount has happened since where we left off in our initial stories (that’s three lots of chemo, an infection and VIP Willberry events) but I hope that by blogging like this it will help everybody understand what we are going through together and how we are #kickingcancersbutt as best we possibly can! We will probably end up alternating who writes each week so you get both our perspectives (though I’m sure you’ll prefer mine of course) but this time I will as Hannah’s had it pretty busy recently and isn’t up to spilling the beans as well as I will. So let’s go back to the first chemo where we officially kicked off this kicking cancers butt malarkey on 21st May!!
As I’m sure you will remember Hannah had just been admitted into hospital after a ghastly couple of days and a trip to A&E.. We weren’t in a good place even before we headed into the first lot of chemotherapy and it was definitely the hardest to watch Hannah go through as you didn’t know what to expect heading into something so unknown.
Despite not being sick as we were told she would, she still experienced a great amount of nausea and the way in which she almost seemed “knocked out” was quite drastic as all the strong, determined, feisty Hannah air inside her just seemed to have disappeared. For Hannah’s first batch she would have two different drugs pumped in through a line into her chest at the same time for three days constantly (yes, that’s night and day!). It took a while to get used to sleeping with wires wrapped round you and sleeping wasn’t easy due to pain before! Even once the third long day of chemo had come to a close the doctors still seemed very keen to keep her in and you soon learn why when you hear of other stories, such as Hannah’s new and first friend she made in the unit, Ben, who had a severe adverse reaction and ended up in ITU for 5 days when his tumour ruptured in response to the drugs… Glad we stayed! But finally on the following Tuesday we had the all clear and Hannah’s beam was lifted once more - we couldn’t stop smiling all the way home.
Right, now we had a two week break in between before our next sessions which would then run for three weeks in a row - we weren’t ecstatic about this to be fair but the “break” seemed inviting at least to start with! Han was very keen to make the most of this time and do plenty with her horses, put the weight lost back on and see her family properly. Little did we know how big an effect, particularly this type of chemo, would have for some time afterwards or the constant nurse visits needed to ensure Hannah stayed up to full health.
It had been implied by the doctors in oncology that the tumour, as a result of the chemo, would get angry and swell for a short time before it should then decrease and relieve the pressure, thus resulting in Hannah being in less pain and wallah, what should be happy days! Hmm… It’s been 3 weeks and we are still waiting! Each day Hannah’s pain increases and even when the strength of painkillers do too, it just isn’t enough… Clearly Mr Tumour is still pretty angry.
Hannah’s day continues to consist of tossing and turning; an hour on one hip facing one wall and an hour on the other hip facing the other side of the room to reduce the risk of pressure sores forming. The nurse comes most days to take her blood and a trip to see Chesney is an absolute highlight but we then have a couple of hours sleep after that - this isn’t dissimilar to when visitors come. I hate it when Hannah beats herself up having turned visitors away but it’s only because she is so tired! She knows they care about her huge amounts and want to support her on this big journey but a lot of the time she quite simply doesn’t have the energy to talk but her listening skills have improved immensely I must say!!
We had a quick trip into hospital on 2nd June for a blood transfusion as Hannah’s red blood cell count was a bit low so she needed some haemoglobin and other bits and bobs pumped in to get her levels back up for 6 hours that Tuesday. Well I was dead chuffed to announce my new role as #chiefbloodpony and think I did a pretty good job.
Fortunately we didn’t have to stay overnight for this so we’re soon home early Tuesday evening. Come June 3rd, a visit from horsey buddies early on in the second week of her break Hannah felt increasingly hot so Mummy Francis took her temperature… Uh oh 38 degrees!
Hannah was outside like a flash of light. A high temperature only meant one thing. Hospital. She had an infection. She led on the grass for the next 10 minutes in shorts and t-shirt trying to cool down but it just wouldn’t decrease - oh bugger. Bags soon packed, hospital phoned and we headed into Bath as Bristol were full on this occasion. Since the last lot of chemotherapy Hannah had begun losing her hair, something she only really talked to me about properly in how she was scared of the thought whereas with others, like friends, she would be brave and make out like she didn’t care or wasn’t fussed about a rainbow wig as it would be “cool” and “funny” but really Hannah was just outright worried about scaring people- she’d be “ugly and bald” for goodness sake (though of course I disagreed).
So anyway, back to the story; Hannah wanted to lose her hair at home in private with me by her side, not in hospital with lots of nurses and doctors and people flitting in and out all day every day. This infection couldn’t have come at a worse time- particularly with Mavis at Mattingley Horse Trials that Friday - a date that had been in her diary for weeks and she’d been working on getting strong enough to make the journey (there and back) for some time!! That Wednesday evening the antibiotics began straight away as she had very few white blood cells in her body (which regular blood tests can show) to combat whatever this infection was. They carried out so many tests not only on the blood but swabs to see if they could find what was causing this reaction in her body. It was mental. Every 6 hours yet more antibiotics were pumped into Hannah’s chest line which eventually gave her a dodgy tummy and general grogginess in everything she felt.
Her mouth ulcers now seemed to have upgraded in their monopoly from houses to hotels and every time she spoke, Mayfair (the one that got the most money - the BIGGEST one) had a bit more as her teeth dug straight in and had huge pleasure in giving her pain! I hope that makes sense in monopoly terms I’m fairly new to the game (only introduced last week)!
Our sleepless nights continued as we fought the infection though this was no different to normal before we finally made it home Saturday, hair loss day.
Hannah had chosen not to shower at all whilst in hospital as this is a time when the most hair tends to come out and kept it tied up so she couldn’t fiddle with it. But when she brushed out a bin full, yes a BIN FULL of hair following that shower we knew it was time to go and the clippers came out!!! In actual fact, Hannah was totally and utterly relieved to have it gone, no more itchiness, no more hair everywhere, she was free and was one step closer to the other side. Now, for a wig!
So basically that Monday we met a truly crazy but
totally lovely wig lady who has a shed in her garden called the wig sanctuary… As mad as it sounds, there is no other job that lady could be more suited to and Cassie found Hannah the perfect wig that she feels totally happy comfortable and confident in so what more can you want? She even let me try some on and hide amongst them for Instagram posts! It was so fun!
We will also get one through the NHS via the Little Princess Trust which provides wigs to young people who have lost their hair. Before Hannah started treatment she donated her hair to this charity so I’m really glad that through so many peoples generous support buying wristbands, chocolate. T-shirts and donations you have helped us to give something back again too. So THANK YOU!
So infection beaten and wig sorted we are ready for chemo round 2 on 10th June where we headed in for hydration that Wednesday to Bristol again. Dad stayed for the first time; Han was keen for him to enjoy it so he’d come again… Well let’s just say lots of chocolate joined me in the luggage bag! Bright and early we were woken to start Thursday morning with a toxic yellow liquid being pumped into Hannah. It all looks rather serious and scary I must say.
Well by 11am she was like zombie, totally out of it, sleepy with slurred speech and little recognition of the world around her. Some might think that was nice but knowing Hannah I know that not being in control is not a happy thing for her; it’s the complete opposite so it must have been really hard to deal with until the drug passed out of her system again by Saturday. Mum and dad swapped Friday night so Mum had a more sociable version of the patient. Fortunately by Sunday results showed that the drug was now down to a suitable level for Hannah to come home (woohoo) so we were all pleased to escape the sterilisation of white room number 1!
Home for two days and back again sadly for chemo number three on 17th June but Hannah made two huge steps on both days. Monday Chesney came in from the field to meet me properly for he first time (this was number one priority obviously) and to have a brush from Hannah. He was an absolute angel as she hobbled round him and I’ve never seen her so happy since we met a month ago. The smile on her face and his content look was a picture. Just perfect.
Then, after an afternoons napping, Tuesday morning we were to head to Toms for my first riding lesson on mavis - I even had a riding hat and looked super duper snazzy whilst Hannah watched in the sun from the side - I’m sure this did her the world of good. I overheard Hannah telling her mum how well she thought Mave looked, sleek, strong and smart so I think that’s good praise, I’ve heard it about me before so she can’t be going far wrong!
All the same, seeing someone else riding her pride and joy, her absolute angel is so hard. I know she misses her horses and riding more than anything, it’s all she’s ever done in life and all she’s ever wanted to do in life and she will do it again I know it. She’s definitely happy with things but they’re just not as they should be.
So, even though we had a slightly snoozey trip home Han was definitely happy and made happier on return by Minty and pizza for lunch as they had a cool catch up over their favourite food. Beautiful brownies dropped off at 4 ready for hospital and further visitors at 4.30 we had a super busy day but we were ready for battle number 3 the next day. Grrr. Bring it on. This is the last part of cycle one of chemotherapy for Hannah and takes five weeks. Hannah has one more cycle exactly the same before they scan the tumour and assess its progress so it’s quite a long wait still before we know if these evil chemicals are even working but we have to trust the geniuses I guess! Anyway round 3 and we are fully raring to go. The drugs had the same effect on Hannah again this time on the Thursday and completely knocked all the stuffing out of her but at least we know this is meant to happen this time and will be a side effect for the next when we have the drug again! By Saturday the perk has returned and we make it for a little walk to M&S and back for some yummy goodies for us all. Hannah’s brother Sam visited for the first time in a while today and she was so chuffed to see him. I know just how hard it has been on everyone facing what has happened to my best friend especially having watched from the side lines but experiencing first-hand the support Hannah has from her family who are like a rock, her friends who just seem to encase her in this bubble wrap and her incredible Willberry fans that drive her fowards each day…. Well she couldn’t do it without any of you. Each and every one of you plays such a vital part in Hannah getting through this and I personally, as Willberry wonder pony, cannot thank you enough and I’m sure Hannah would and is saying the same. Thank you thank you thank you.
Home time Sunday then we are back again Wednesday to start cycle two but it will be for the last time in a little while for our two big “killer drugs” so we will need our brave pants on again. But this is as far as we go for now blog wise - this was a big one wasn’t it! I hope you’ve enjoyed it and it all makes some sort of sense as you follow us in our journey #kickingcancersbutt!
It’s our three week Instagram anniversary on Monday (22nd June) and it would be amazing if we could reach 11k by then so our hopes are left in your hands guys! Make us happy!
Keep buying wristbands too!
Lots of Love,
Willberry and Hannah xx