My new hair cut. This photo was taken right before my first round of Chemo. Friday 26th July, 2013.
This is the view from the top of the dome of St Paul’s Cathedral. Love.
This is what the Cooling Cap Looks like. It gets down to about -6 degrees.
Everytime I have to wear one of these silly gowns there will be a silly photo! The undies are the most comfortable I have ever worn and they suck your gut in!
Hello wonderful people in my life,
It has been 2 weeks since my first round of chemotherapy.
I thought you would appreciate the update to know that I found it reasonably straightforward and easy and I have not really suffered from any side effects. I have been feeling very well and apart from feeling a little bit more sleepy than usual and HIGH from the steriods that I get via drip it’s been a pretty sweet first round of treatment.
Life has been pretty busy and it has been good to enjoy the English sunshine in one of the best summers in the few years.
I have celebrated my 28th birthday, caught up with friends visiting from NZ – Elle and Rob, Megan, Mira and Ricky as well as those living in London – Megan, Jackie, Rob and Alice so lots of lunches and dinners out and plenty of sight seeing. Was great to see Emily this past weekend too who was down from Glasgow for a hen’s party in Brighton and stopped in London for a visit on her way back up to Scotland.
Spent last weekend in the beautiful West Midlands town of Shrewsbury with Mira who I went to Fashion school with and her partner Ricky who is from there. What a stunning little town. Charles Darwin was born there. We had a good look around and even made it to a football game – my first. Could’nt believe the amount of foul mouth banter between the home and away supporters…..haha and apparantly it was mild! I am not going to lie I was a bit scared. Was great to escape the city for a couple of days was so lovely and relaxing.
Have covered a little bit more of London. Did one of London’s listed 100 walks from Syon Park to Strawberry Hill which goes along a section of the Thames, through some beautiful parks and around the area of Twickenham. A nice 8km stroll with great sites to see. Have to admit the St Paul’s Cathedral experience was just stunning and walked up what seemed to be a million steps to the top of the dome to get some incredible views of London (picture attached). Was great to do this with Elle and Rob and I am looking forward to seeing them again at the end of August after they have done some galavanting around Europe – I stayed with Elle and Rob before I left NZ and I worked with Elle at GEIS. Was lovely to catch up with Megan (we went to teachers college together) and meet her cousin Laura. Together we did the London Alternative Walking Tour around Shoreditch / Brick Lane / Hackney and were able to see some amazing street art as well as learn about some London history. We also walked along Regents Canal which was lovely and is another thing I have been able to tick off the “Things to do in London” list.
My first round of Chemotherapy was on Friday 26th of July, three days shy of my 28th birthday. The day before I made the decision to cut my hair short. It was recommended that I do this as it would be less traumatic if my hair does start to fall out and that it is easier to wear the cap and it works more effectively if the hair has been thinned out somewhat. It was a hard decision as I love having long hair and it did take me a long time to grow that mane……but it was not that bad and I kinda like it short. In any case I have had it this length before and I suit it so pretty happy in the end with the chop!
Chemo – Round 1 of 8 was a good experience. I just want to say that I was a bit anxious going in as you could imagine. There is such massive negative connotations surrounding Chemotherapy because of what is does to people with the side effects and such. All in all I found it pretty pleasant and the nurses are very helpful and explained everything that is happening and take you through it all step by step. It makes me sad that there is such a negative light surrounding the treatment that can save lives and I just want to tell you all it’s not actually that bad. Well maybe that because it’s only round one…..I was able to speak with someone who went in a couple of days before me so that was really helpful in putting my mind at ease knowing what was going to happen.
Getting the canulla (a thin flexible tube drip) in was a pain. My poor little veins are not happy with me at the moment. I have been advised that I may have to get a Portocath put in. It would go into my chest and would need to be put in surgically under general anesthetic. I’m going to try and avoid it for as long as I can and will take the needles in the hand until my veins refuse to play the game. I don’t think it will last very long.
Before the treatment starts the cooling cap has to be turned on and frozen. It gets down to around -6 degrees. My hair gets wet down a bit then I have to have the cap on for around 45 minutes before the chemotherapy drugs start being administered. I have to wear the cap for the duration of the treatment and then for 2 hours after the treatment is complete to ensure that my scalp remains cold. This is meant to stop your hair from falling out by freezing your scalp and tricking the chemo into staying away from your hair folicals. If it doesn’t work I have a very nice wig that looks so real you can’t even tell it’s a wig. They are so amazing. Had some fun trying all kinds of different wigs when I got mine fitted. Dark, hair, light hair, short, long…..great fun!
For the first three rounds of treatment I will be on EC Chemotherapy (Epirubicin and Cyclophosphamide). First they put through a saline drip to flush your veins, then an anti-sickness drip to combat the side effects. I think this is where the steroids come in that make you super high. Then it’s the Epirubicin. This comes in three giant syringes (which make great water pistols) and is a dark pink colour. Haha it makes you pee pink for the next 24 hours! By the end of this experience I am sure I would have pee all colours of the rainbow. The nurse sits down on a stool in front of you and slowly injects the pink chemo into the canulla. It takes about 20 minutes per syringe. Then the Cyclophosphamide is administered via drip. My lovely friend Danieka joined me for my first round so it was great to have the company. Was in the Chemo Suite from 9am to about 2:30pm so not too bad. Just like a short school day!
I didn’t feel too bad afterwards. As soon as I got home I took the required dose of anti-sickness medication and a couple of the girls came over for a BBQ dinner. That’s when the steriods kicked in. Let’s just say I got into a passionate rant about something and I was a high as a kite! Slept two hours that night. All week I had spontaneous highs with a couple more sleepless nights. Then it died off which was good. Stopped taking the anti-sickness meds a couple of days after treatment. Was eating normally and didn’t feel like I needed them so stopped taking them. Had to have immunity booster injections which started about 4 days after treatment and I had to take these 5 days in a row. These are injected into the stomach similar to IVF so not too much to cope with as I had experienced this already. Had a couple of mouth ulcers but that was only for a couple of days then they went again. The only problem with the steriods was that my brain was so ALIVE but my body was exhausted. It felt like I was brusied all over which was not that nice and was a lot like muscle soreness. When the high went away I was able to sleep for hours which was just amazing! Have to try to chill out and not do to much when I am high as the crash back down to Earth will be a lot harder in the months to come. Hair on my body is easy to pull out and I am having to shave my legs and armpits less. Lets just say with to much detail I will be saving a lot of money on waxing! I have not noticed my hair on my head falling out and I am trying not to handle it to much.
“Lumpy” has responded to the treatment. He has moved within my breast up, down, from one side to the other. Been hard then soft. Now he is soft and sitting in the center of my breast. It’s pretty healed now after being poked and prodded so is not as sore as it was. Glad things are working and I can tell that the Chemo is doing things to Lumpy to make him go away or get smaller. Little fucker.
I feel like I have found the “cheats” to the first round of the game. It almost feels wrong to feel as good as I do which it as close to normal as I could be I think. I’m trying not to get too excited about the fact that I feel pretty normal at the moment. Making the most of feeling good and getting out and enjoying the summer sunshine while I can. Will cross that shitty awful chemotherapy side effect bridge when I have to. Next round of Chemo is next Monday 19th of August. It was meant to be this Friday but apparently they are redecorating the Chemo suite. Hope they get some bigger more comfy chairs! A bit bummed that I have to wait because this is certainly something you have to psyched up for. Glad that I will get the weekend though so not all bad.
I have just joined a group on Facebook called “Shocking Pink” which is a support group based in New Zealand for young women with Breast Cancer. It is unreal how many women around my age or younger that are affected and challanged by this disease. I already have connections with some of the people in the group – mutual friends and family connections. Two degrees of separation strikes again! It is so amazing to be apart of such an amazing inspirational group of women many who have beaten the odds. The one thing that this group has given me is hope. More than what I had before. Some of the women that have shared their stories through the site and through facebook are far worse off than me and they have had very interesting and tough challanges. Their courage is so inspirational I know I will get through this and be a stronger person once I get out of this dark tunnel I am in.
Check out the link: http://shockingpink.org.nz/
To those of you who have sent care packages, birthday gifts, cards, messages – texts, facebook etc, called, skyped and just come to hang out with me, thank you. It means so much. Everyday I feel blessed by many of you who are in touch and care enough to ask me how I am and if I need anything. Keep the good vibes coming. I can feel them even though some of you are literally a world away!
So currently enjoying not working and sleeping in, watching Game of Thrones and movies and having multiple lunch / dinner dates each week. This is what school holidays are all about! Got a few catch up’s lined up this week and some birthday celebrations for friends. Also looking forward to a fun weekend before Round 2 of 8 next Monday.
I need more donations and participants for my half marathon night walk with Shine / Cancer Research UK. Saturday 28th September in London. Thanks to the latest donation from a secret little squirrel! Whoever you are…..you are amazing. Check out the link: http://www.justgiving.com/wellerjess
Now I try not to get to philosophical but in times like these you reflect on what you have done in the years you have lived, what you have achieved and how you got to where you are before the next challenge is laid out in front of you. These times make you set goals, make you stirve for more in life and truly make you realise how much you appreciate living and how much you want to live. You remember things you have learnt from people that inspire you and those that have picked you up when you have been down and pushed you through even when you could not face what you thought may be around the next corner. These times seriously makes you appreciate what and who you have in your life. They also make you realise who and what you need in your life and who and what you don’t.
Having cancer has brought people back into my life that I have fallen out of touch with. It’s not the greatest circumstances in which to rekindle friendships but it certainly makes you aware of who will be there for you. No matter what happened in the past the future is what I am looking forward to the most even though the next six months will probably be the darkest I have experienced ever. I am in no way glad I have cancer, but I am glad for all the love and support from all of you that keeps a smile on my face and makes me want to live each day as if I have hundreds of years left to live. Tell the people who you care about how much they mean to you and keep them close. Make the effort to be in touch and don’t make excuses like “I’m busy” or “I don’t have time”. Tell people you love them. Believe it or not knowing that someone cares about you makes a difference. I am living proof of that.
Hope this finds you all well,
Love you all….
Jess xxx
Jess Weller 