December Update
The best way to describe the past month is an up hill slog. Its been a case of head down, blinkers on and just focusing on getting through each day. Luckily things have improved slightly as Im not sure how long I could have carried that on. I couldn’t have started the last round of chemo soon enough! The pain leading up to starting the chemo was overwhelming and I was so weak I struggled to hold my head up sometimes. Which meant travelling up to UCLH in central London was a challenge. However I am so much happier with my care being at UCLH rather than at Southampton. My new oncologist wanted a baseline scan before I started this newest course of chemo. It revealed that the cancer had grown a bit more since my last scan just 2 weeks before. This was not a surprise because I could feel it growing in me. It was a nasty combination of intense pain, increasing pressure and nausea all building up in my abdomen. Not a nice feeling to live with and it had me bent over for days before I got on top of it with medication. The oncologist said their was also a new bit jutting off my liver and this could be what was causing a really intense stabbing pain under my bottom right rib. Unfortunately thats put a stop to lying on my front and any deep breathing. In fact laughing, coughing, yawning, deep breathing and hiccuping are all no no’s if I want to avoid a stabbing pain in my side.Before I had the new bag of chemo attached I had various tests and meetings with different people at UCLH. One of these meetings was with a specialist pharmacist. All of this care helps me feel so much more at ease. She went over everything I had been prescribed and also asked me to come armed with a list of supplements I take. This was a rather long list! There were a few things she told me to stop taking as they can interact with the chemo or the drugs I take to combat the side effects of the chemo. One supplement I was told to stop taking, if it was more than 100% of my RDA, was vitamin C. When I got home I rushed to look at the container and it turned out to be well over 1000% of my RDA. Now, vitamin C is an antioxidant and too many antioxidants can stop the chemo from doing its job. Ive been taking a high quality/ high dose of vitamins to help boost my immune system. During almost 2 years of care at Southampton I didn’t speak to anyone about what extra supplements I was taking because I didn’t know I needed to. There is no point thinking what if. I just have to focus on the now and keep heading onwards and upwards. Im just so relieved I don’t need to go to Southampton anymore.
The bag which holds the bottle of chemo I’ve had to carry around with me 24/7 for the past 2 weeks started off not to be too much of a nuisance. However after a week I wanted to rip it out my chest and lob it off a cliff. Although, I’m still working on my left arm so it probably wouldn’t go far. Ive attached a picture as Ive been a bit of a hermit recently so not too many people saw me sporting it, or I had it hidden under my top. The bag contains a bottle with a ballon filled with chemotherapy. This balloon gradually pumps the chemo into my chest port over a week. I have to then return to UCLH to have the bottle changed ahead of the second week. A few times I would catch the lines on a door handle and feel the needle yank at my chest port. This would send me flying back in fear it was going to be pulled out, and then id have a toxic spillage to deal with. They sent me on my way after having the pump fitted with a emergency chemotherapy clean up kit. This consists of a cardboard box with instructions stuck on and filled with various gloves, aprons and waste bags. The first instruction is to evacuate everyone from the area!! I didn’t get past that.
This new high dose of Ifosfamide did make me pretty sick. I haven’t been affected by vomiting much until recently. Most mornings during the two week infusion were a write off until the anti sickness, steroids and pain killers kicked in and did their job. My energy levels have also been really low, but I have been embracing the Danish art of living called Hygge and making the most of wrapping up warm and cosy indoors. I still have my hair which is a bonus! Unfortunately for me this chemo has decided to declare war on my sphincter again. What is usually an enjoyable part of my morning is now the worst part of my day and the toilet resembles a murder scene afterwards. Bad times for my bum.
I was sent home from UCLH with a goody bag of drugs to combat the side effects. Ive been taking up to 20 pills a day to combat the pain, sickness and risk of heamoragic cystitis. Ive had to test every wee I’ve done over the past 2 weeks for blood, using a jug and special dip stick. This nuisance wore thin after a week of tests coming back negative (which is good news as its testing for blood in my urine) so I stupidly slackened off and started to only test every other wee. I wee more than the average person because I drink so much water and this helps keep my bladder ship shape I think.
For a couple of weeks I have been too tired and ill to keep up with my yoga. Its the biggest break Ive had from it since starting it properly about a year ago and I have missed it. The chemo bag got in the way when I attempted it, and deep breathing was far too painful, so I ended up giving it up for a few weeks. Ive had to learn to listen to my body and how to accept doing nothing sometimes. Since finishing the most recent round of chemo I have been feeling gradually better I think. Ive also managed to reduce the amount of pain killers I am taking. Im not looking into this too much but it can only be a good sign. Now that the pain has reduced, I have 2 weeks freedom from the chemo bag and I have been able to restart yoga so all is good..ish.
Ive been looking forward to being free from the gruelling treatment and hospital appointments for 2 weeks until the next round starts next Friday the 23rd. However my red blood cells have decided to plummet again. This is down to how long I have been having chemo for now and the toxicity of this current chemo. My bone marrow has taken a beating for a long time now so its not creating new cells as fast. So, I spent a very long day sat in my local hospital yesterday having a couple of pints of red. Hopefully it will improve how I feel, because being anaemic makes me feel pretty crappy on top of everything else going on. However this did give me the opportunity to write this post with no distractions.
I always wanted to give blood but stupidly never did as I didn’t want to miss a single training session and id never do it before a rugby match or session. I regret not giving any and because I’ve received some Im not allowed to give it now. So I encourage everyone to do so for me please. You might even save a life! During this current transfusion a nurse came to look at why the blood was going in so slow. Disconnecting the line from my port she didn’t clamp it off and blood squirted all over my jeans. Im not really fussed as it will come out in the wash but she was obviously mortified, bless her. I told her not to worry, but they were brand new on today…!
I cant stand when people get self riotous and sanctimonious for no reason, however I feel I’ve been through my fair share of shit now and my perspective on life changed without me realising a little while ago. And if others can learn from me without actually having to face a tough life changing event then thats great. Maybe Ive got slightly more scared/concerned as time has gone on and treatment options dwindle. Ive become less focused on hobbies and passions I might have lost the ability to do and more focused on just surviving. Its made me realise whats important. Loved ones, health and happiness is all that matters. Everything else is just noise. Id swap every penny I have ever made and every accomplishment I have ever triumphed for a clean bill of health. Health is wealth. All I want for Christmas is confidence in my body again. Once you realise how little you actually need and what actually matters then you will be a lot happier….Or buy a boat big enough that it will help you find it.
My family and I are continuously researching, Im being as positive as I can be and doing everything within my arson to crush this cancer. But the realist in me understands there is a chance this could be my last Christmas. However, no one really knows how many Christmas they have left. Its just having cancer makes it more of a reality. This is why its important to make the most out of every opportunity and what you have because time is never guaranteed.
I really love Christmas so I’m looking forward to it. I think I’ve lost some more weight recently so I’m going to embrace the festivities and try to put some weight back on. Ive lost 3 stone in total now. I caught a glimpse of myself in the mirror the other day and Im the weakest/most unfit I have ever been, yet my abs have crawled out from beneath what little fat stores I had, and they have never looked more defined. Ill do my best to bury them over Christmas.
Putting on weight should be a little bit easier now Ive added a few things back to my diet. I’ve been following a strict alkaline diet which excludes acidic foods, and fun. Luckily I have an amazing mum and she cooks up a storm in the kitchen which helps make sticking to the diet a lot easier. We recently discovered that venison and turkey are very low acidic, so I allow myself to eat them more often now. Ive also allowed myself to start eating organic bread again. This is a game changer! So many breakfast and lunch options. Nothing motivates a bloke more than a good sandwich.
Since growing my hair back and my dodgy face slug I have noticed a big difference in how people treat me. Its nothing personal and it doesn’t bother me, just interesting to observe. When I was visibly unwell people would treat me very differently to how I am treated now, although I am much weaker now with hair compared to when I had no hair….the moral of the story is be kind to people because you never know what shit is going on in someones life. A smile also goes a long way and you never know who’s day you might make with the simplest of kind gestures….thats enough of this deep stuff now.
Moving forward, I start the second round of Ifosfamide next Friday the 23rd. Its a bit shit I will be hooked up to the pump over Christmas and New Year, which means zero alcohol. But that doesn’t bother me much and at least I don’t have to stay in hospital. After this next course, early in the new year, I will have another scan to see whats happening.
Thank you from the bottom of my heart for reading my blog and your support this year. Its been a very very long 2 years, especially when facing this stuff 24 hours a day, but I’m still standing, still fighting and my spirit is as strong as ever. I hope you all have the best time over the festive period with your loved ones, drink and eat lots, be merry and have a fucking awesome time. 2016 has been a bit of a dick and we all need a break from the shit storm that is life. Heres to 2017 being a damn sight better! Merry Christmas and for those Star Wars geeks, may the force be with you. Hopefully see as many of you as possible over the holidays, big love J x
3 Comments
And a very Merry Christmas to you too .
December 15, 2016 at 1:26 amGlad you found the time to keep us up dated with your highs & your lows.
I’m guessing that’s your beloved dog in the picture .
Keep being good & take great care .
Hope you have a good Christmas with all your family. Millie will be there too, so great! Stay strong. Xx
December 15, 2016 at 8:09 amTake care Julian, keep Archie by your side, Merry Christmas to you both,
December 15, 2016 at 9:08 amLove Bev (Alys Morgan’s Aunty) xx