Yesterday a group of us went along to Gunwharf Quays in order to welcome the cyclists back from their two day trip around the Isle of Wight.
Despite rain, steep hills and a couple of punctures along the way the team were all in high spirits (they probably didn’t feel like it but I think what we saw was the relief that their miles of cycling was over and the thoughts of a long hot bath shining through!)
- The ‘Tour de Solent’ Team!
We sat outside in the sun hearing stories from the trip, including when ‘someone’ (there was much shifting of blame over who this someone was!) left the money bucket on the ferry, when Ray decided to cycle to the pub as there wouldn’t be space for five in the taxi, then when the taxi turned up they discovered it actually would have taken six people… meaning that two of the cyclists were doing extra work for nothing and how the tent poles came apart in dads tent so that by the morning the rain was soaking through to the inside of the “2 man” tent!
- I hope you’re not throwing up on the money Immie!
They all did brilliantly, managing 50 miles on the first day and completing the final 20 the second day. The total on the just giving page is now £2020 which is absolutely awesome! I don’t know whether this includes the cash from the Teenage Cancer Trust bucket but thank you so much to everyone who donated in whatever way, you have stunned us with your generosity!
Am happily back at home now and I had my last dose of antibiotics today. Hopefully that will hold off another line infection for the last big month of chemo, then it can finally be taken out! The microbiologist wasn’t worried about it affecting me after as she believes the problem is just in the line. Once it’s taken out it will be one less thing to worry about anyhow.
I still have no word on when the chemo will be under way. My platelets were only 45 on my latest FBC (full blood count) when they need to be up to 75 in order to go ahead. I’ve gone through a whole spectrum of emotions about this: from patient to annoyed, calm to angry. Honestly I have now given up thinking about it as much as possible. I have to accept that getting the full treatment is my priority and the chemo will happen when it happens. Plus I learnt early on that not much runs smoothly or swiftly in hospital! I’m taking it as a test of my patience, which is something I really need to work on! Even though it is unfortunate that it cuts into summer more now there is nothing I can do about it. That’s the way the cookie crumbles!
Now, do I have any Zumba fans out there?
(If you don’t know what this is, it’s like crazy dancing for fitness and it is great fun!)
If you like Zumba and would be up for raising money for the Sussex Snowdrop Trust there is a charity zumbathon on Sunday 1st June from 10am to 12 noon. The venue is Oving Jublee Hall, High Street, Oving, PO20 2DQ and tickets cost £12.50 on the door.
The Snowdrop nurses have been a huge help in my journey. Whether it is taking bloods, just chatting or providing vouchers for petrol (the constant drives to Southampton were eating up an insane amount!) the nurses have been professional, supportive and above all caring and kind. The charity deserves every penny that will be raised through the Zumbathon, so get your kit on and join in if you can! They have asked if people could wear the colours of the charity, green and white, but have said it’s not a problem if you’d rather not. I’m really hoping I’ll be able to go but it will be dependent on blood results and chemo.
That’s all from me!
The chemo has definitely started to kick in now and I’m feeling slightly worse for wear, but the sunshine and the fact that I am home is something to be thankful for!
On Sunday the weather was gorgeous so I hosted a bbq for the old gang, we sat out in the sun chatting for hours and it was just really lovely!
I’ve noticed that through this experience I have learnt to treasure every moment of freedom and time spent with friends and have also grown to appreciate the little things- just being able to sit in the sun and have a laugh with my girls was so special!
Another thing that has really struck me recently is how precious life is. Before August 2013 I took my health for granted and it never even crossed my mind that this could happen to me, but since going through this I am determined to make my life count and not waste my opportunities. I think we need constant reminders to appreciate everything we have been given and to live life in all it’s fullness.
Meeting people with terminal cancers through the ward is always inspiring to me, but I still find the whole thing so indescribably unfair that I can’t wrap my head around it. How can I get off with no complications whilst someone else has been suffering for years without a positive outcome? Why should I be the lucky one? I’ve found that it makes me long for the day when there is a cure for all cancers.
This is one of the reasons that I really connect with the latest Race For Life advert (if you haven’t seen it you can follow this link… https://www.youtube.com/watch?v=ueU_zGjnJLA ) I love the tone of the narration, it says we’ve had enough of you cancer and we’re coming to get you!
In the past used to naively assume that because cancer is still one of the major causes of death in the UK Cancer Research didn’t actually do much, but how wrong I was! I now know a lot more about what they do and just recently made the link between the charity and clinical trials. This was something I was offered in the beginning of my treatment and it made Cancer Research more relevant to me. Through the viral “no make-up selfie” campaign (in which women take a photo of themselves fresh faced, post it online, text a donation to charity and nominate others to do the same) an astonishing £8m was donated to Cancer Research UK. This money can now go on to fund nine more clinical trials which I think is really great.
Since this charity has been put on my heart I have found an event called Shine Night Walk, a walk around London in the evening on September 27th and am thinking of entering this year to raise money for them. It will require training and planning but I will let you know if I get a group together and am looking for sponsors!
Before I go tonight I have one last story to tell! You might remember that back in February I missed a Taylor Swift concert I had planned to go to, the one that one of my nurses then went to and met Taylor Swift’s mum at? Well, as mama Swift took my name and said for me to write to them I sent off my fan mail at the the end of Feb… and waited. Then waited a little bit more. Finally a package arrived for me today, and I stood staring at it for a while thinking “but who do I know that lives in Nashville?!” then the light-bulb moment hit me and I was grinning and tearing at the cardboard! The parcel contained some really cool merchandise from her Red tour including an autographed photo, t-shirt and some mega cool Taylor Swift guitar picks! Anyway here’s a picture to show you my goodies!
I am feeling good day today, I didn’t feel tired like before and have had some lovely visitors to make my day!
I had to have the usual daily tablets and anti-fungal drip but otherwise everything has been normal.
Tomorrow I need to have a couple of units of blood products to strengthen me up for some procedures on Monday and Tuesday which I thought you guys should know about. On Monday I will be having another lumbar puncture where they put some chemotherapy into the spinal fluid to make sure there is no leukaemic cells there. The first experience of this awake didn’t go well. Every little thing went wrong and it ended up rushed and difficult to find the right spot and I really didn’t enjoy it so prayers/thoughts appreciated! She is going to try a different position and give me something to make me a bit spaced just to make it easier but I am still a bit apprehensive!
Tuesday is booked for a bone marrow test which is supposed to be the worst of the two but I coped fine the first time- hoping this will all go smoothly again!
These tests will hopefully show a ‘marker’ in my cells which they can examine to judge how my cancer has responded. They decide what the next stage of chemo is so it is quite important! The one problem is that the test can be indeterminate which means they can’t give you a conclusive answer of how you have responded and whether you are in the high-risk or low-risk group. FINGERS CROSSED FOR LOW RISK! At the moment this seems likely judging by the results of the two I have already had and how generally well I am. I’ll be able to tell you in a couple of days to a week after what the results of these are so stay tuned!
So someone asked about how many people look at my blog and how well it is doing and trying to stay as modest as possible I feel like it is doing really well! The response I have had from people has been really encouraging! I have had a mix of random followers, family, people who know me keeping in the loop and it is even starting to spread out and get to people who don’t directly know me but want to follow it which is amazing! This is just what I wanted and my daily stats are at a good level! I’m not aiming to be famous or anything but in the future when I can get out more and get involved in fundraising events and things it would be cool to branch out even further, I just need to exert some more effort and get it out there!
Now I am going to eat some heavenly chocolate brownies from Kim and open a lovely looking gift from Jemma! Hope you are all well, thanks for reading.