End Date Ball: Details!

So as I announced in my last vlog, I'm celebrating ending treatment by having a ball at The Duke Of Cornwall Hotel in Plymouth to raise money for CLIC Sargent. Here are some more details!

The Duke Of Cornwall Ballroom

The Menu
The catering staff at The Duke of Cornwall have put together a great 3-course set menu for us, with coffees to finish. They are also happy to accommodate and adapt the menu for any dietary requirements, they just need to know up-front.

Starter

Smoked chicken Caesar salad with garlic croutons and crispy bacon

(V) Tomato, roast pepper and aubergine soup with basil pesto

Main

Braised rump steak in stout with button mushrooms, onions and crispy bacon

(V) Butternut squash risotto with pine nuts, spinach,chives,watercress and black truffle oil 

Dessert

Baked chocolate fudge brownie with chocolate, caramel, pecan sauce and Cornish clotted cream 

Entertainment

I'm pleased to announce that we have the support of the amazing Scarlet Sirens burlesque group, who will be kicking off the evening by performing a routine for us. There will also be a disco after the meal, and perhaps some additional performers! 

Dress Code 

The dress code for the event is formal, with black tie being optional. This means it's a great opportunity for you to get dressed up! There will be a photographer there too, to catch photos of everybody looking their best!

How To Buy Tickets

The tickets are now all printed and ready for purchase! They are £30 each and can be bought on PayPal using my email: PeteYJerrett@Yahoo.com , or can be bought from myself or any of my family in person. If you are interested in buying a table, they can seat from 8 - 10.

I'd love to see you there to make this celebration a success and to raise as much money as we can!

Pete

Maintenance: the Good, the Bad & the Ugly

I'm currently on my final, longest, and least aggressive phase of chemotherapy treatment for ALL, which is called maintenance. 

What Is It? 

I started maintenance treatment in January 2014. For boys, this phase lasts 2 years and 7 months, and for girls it lasts 1 year and 7 months. 
Because I'm on a clinical trial, my treatment isn't the same as patients who were randomised to other experimental conditions. For me, maintenance treatment means the following: 

• Oral chemotherapy every evening
• Additional oral chemotherapy once a week
• IV infusion of chemotherapy once a month
• 5-day block of steroids every month
• Intrathecal chemotherapy every 12 weeks

However, some people on the trial get randomised to not receiving the latter three. 

The purpose of maintenance treatment is mostly preventative care; most of the leukaemia cells are killed in the intensive stages of treatment, and this is mostly to make sure they stay that way. 

The Good

Maintenance treatment is a lot easier on the body than the intensive stages. People will be put on different doses of treatment but in general, all of the side effects of the chemo slowly get a bit better and more manageable. Your hair grows back and the sickness and nausea aren't as incessant. 

As well as the meds getting more manageable, so are the hospital visits. I still need to go in for chemo, clinic and blood tests (fun fact: Google Maps has automatically marked the hospital as my "place of work") but this has gone from being nearly ever day to about every other week, which means hospital visits aren't running my life as much any more. 

Both of these mean that you can do more. This differs from person to person, depending on their situation, but I myself have been able to take on some voluntary work which I wouldn't have been able to do beforehand. Because my immune system is a bit stronger, I'm able to go on short breaks away and more social events, as well as a lot more freedom with what I can eat! 

A lot of the opportunities offered by cancer charities aren't suitable for patients on the intensive phases of ALL treatment, but maintenance gives you that bit more flexibility to take part in them. For example, you can see some of the stuff I've been up to with Teens Unite here. 

The Bad & The Ugly

One of the common complaints I hear amongst my ALL friends is that "people assume you're okay now, but you're not".

Basically, maintenance makes me feel like I've got a constant hangover. I can have the best night's sleep ever and still wake up feeling tired and drained of energy. This is something I have got a little accustomed to over time, but it still takes its toll. I often find I can't join in with things which are early in the morning or late in the evening, as I will be too fatigued, which goes against the grain of a 21-year-old's ideal social life. 

Most of the side effects are pretty manageable, and nothing I should complain about, but they are all still there. I spoke previously about how my hair is thin and falls out easily, and nausea and vomiting will affect me about once a month. Because my immune system is still pretty poor, I'm more susceptible to things like colds and infections, which hit me harder than they would a normal person. As I said, they're nothing I should complain about, but I still have unpredictable "bad days", which (in conjunction with day-long hospital visits) means that at the moment I couldn't even consider getting a part-time job. 

It was at the maintenance stage that I realised the longer-term implications of cancer. As many of you know, my steroids had to be stopped because of avascular necrosis in my ankles. This means that, in the past year, I have had to give up running and my gym membership: two things which I loved doing and really helped with my mental and physical wellbeing. (I've been struggling to find forms of exercise which I'm physically able to do, and am currently trying to give swimming a try, so fingers crossed!)

The most frustrating thing I've found with maintenance treatment is that I try to fit in to normal life again - the life that my school friends and other people my age are living - and find I'm not able to, or I don't fit in any more because I've been sat in hospital not doing anything for a few years whilst everybody else has been moving forward, which is unbelievably disheartening. 

Many patients, myself being one of them, enter maintenance and "try to run before they can walk". I've found this applies to most aspects of life: social, fitness, romance, work, etc. - like you're running through mud and getting nowhere fast.

Finally... 

Despite the good, the bad and the ugly, maintenance is something which I try my best to just get on with, and haven't really spoken (or moaned) about much until now. Of course, I have much to be thankful for, I guess I just wanted to put across the whole picture and both sides of the stage which I am at right now. 

As always, a reminder that everybody's experience of cancer is different, and I have seen so many different experiences of people going through maintenance. This is just about my own experiences! 

Feel free to add a comment or question below, or fill out the contact form!

Thanks for reading 

Pete

Hair

I wasn't planning on doing this so early, but my chemo dosage has just been increased again, so here we go!  

My hair - December 2015

For the past 18 months or so, I have been growing out my hair, and now have a man-bun which is several inches long. There are a couple of reasons for this, the first, but least prominent, being me experimenting hairstyles as I have been since the beginning of secondary school. More importantly, due to still being on chemotherapy, my hair is very thin, so I wanted to grow it long to create the illusion of thickness (you could see my scalp through my hair when it was shorter). 

However, the most important reason is that I have been planning on shaving it off all along. 

On the 3rd May, I will be taking on The Big Buzz for CLIC Sargent and shaving my head back to the wood to raise money for children and young people with cancer, and their families. 

My LPT wig - October 2013

The reason for the growth is that my hair is now over 7 inches long, I can donate my cut hair to Little Princess Trust, to be made in to a wig for a young person who has lost their hair. LPT provided me with an amazing acrylic wig whilst I was going through the intensive stage of my treatment, so it would be great to give something back to them, and maybe help another young person... provided my hair is good enough quality! 

The dosage of my chemo tablets has just been increased again, as per the protocol. This isn't a problem for me, but every time the dosage is increased, my hair weakens, gets thinner and molts easier, so I've brought the date of my Big Buzz forward. 

My fundraising goal for this challenge is £170, which would fund an initial CLIC Sargent grant, which is given to a young person within the first 72 hours of a cancer diagnosis. This is to help with the initial additional incurred costs, such as travel and accommodation, and was greatly helpful to myself and my family. 

I have set up a JustGiving page if anybody would like to sponsor me - if 100 people sponsor me £1.70, I will have hit my target! https://www.justgiving.com/petebigbuzz 

Thanks for reading! 

Pete

Spinal Tap

I've just had what I estimate to be my 27th spinal tap.  

Lumbar puncture, IT, spinal tap, intrathecal... a rose by any other name would smell as shit. 

For those of you who don't know, these play a big role in my treatment, as unpleasant as they are. 

What It Involves 

The procedure involves sitting on the edge of a bed and bending forward, so that the lumbar vertebrae of my spine open up. A doctor then prods and pokes around to find a good spot, then injects local anaesthetic into either side, to numb the flesh. Once numbed, the doctor inserts a needle into the gap between my vertebrae to puncture the spinal cord and collect spinal fluid. 

This is then swapped for a syringe if the chemotherapy drug methotrexate, which is injected into my spinal cord. I then need to lie down for around 30 minutes so that the chemo can "slosh around" in my spine. 

Why I Hate Them

Due to the number of these procedures I've had, it's not always straightforward and because of having had so many needles in it, the lumbar section of my back has formed tough scar tissue. This means that it has become increasingly hard to penetrate with a needle, each procedure now usually takes several attempts, sometimes by numerous doctors, and a few bent needles. As you can imagine, this makes these procedures more painful and lengthy than they should be. 

Because the spinal cord is surrounded by nerves, this also serves a problem, as if the needle hits a nerve it sends a painful "electric shock" through your body, which is very unpleasant. Sometimes, after an intrathecal, I'll be fine and able to carry out my daily activities. Other times, I'll be struck with a bad backache or headache, which means I'll have to recline or lie down for a few days, and restricts me a lot with what I can do, until it has passed. 

All of these, combined with stories of other people's experiences, have made intrathecals a cause of great anxiety for me, and so I always have somebody accompany me to appointments and take sedatives, as well as gas and air, to help me relax for the duration. 

Why They Are Important

The blood system and the central nervous system work independently. However, in some cases, leukaemia can transfer from the blood into the CNS. This is why spinal fluid is collected, to be examined, and chemotherapy is then administered as a precaution, to kill any leukaemia cells which may be present and to prevent any leukaemia cells from transferring. 

Because I presented with headaches and visual disturbances at diagnosis, the doctors were extra cautious with me, and gave me an intrathecal every week for the first 5 weeks of my treatment, which is probably why my scar tissue is so bad. Now that I am on maintenance treatment, I have them every 12 weeks, as per the standard protocol. 

And Finally... What To Do If You're Expecting

If you are reading this and you are due to have the same or a similar procedure, please do not be put off by what I have said. Everybody's experiences are different, many of my friends have gone through the same thing without any complaints, and most of the problems which I face with intrathecals are due to the abnormal amount of them which I have had. If you are worried or anxious at all, don't be afraid to discuss sedation options with your doctor, or to take somebody with you. 

To find out more about lumbar punctures, check out the NHS Choices website. 

Pete