Update – final one?

This is the blog that I knew I would have to write eventually but was really not looking forward to. You can probably guess what is coming – my condition is now deteriorating quite quickly and this may be my final update.

So, what has been happening? Well it isn’t all bad. In fact there has been a lot of very good. Neil, Charlie and I had a lovely five-day holiday at Center Parcs, Woburn and on the way home stopped at Woburn Safari Park. The highlights were a monkey jumping on our car and peeking in my window and getting to pat my favourite animal, an elephant!

lion
I didn’t try to pat this guy
monkey
Hello monkey
elephant
My elephant friend – her skin felt like wrinkly paper – alot thinner than I imagined.

Two weeks after Center Parcs, Neil and I went away for a two day spa holiday at Pennyhill Park in Bagshot, Surrey. It was absolutely lovely and very relaxing. We just got back a couple of days ago.

Shortly before we left for the spa I noticed that my symptoms were getting a little worse. I was unsure as to whether to go into detail on the symptoms here, but it could be useful for somebody else in the future so I will include it. If you are squeamish then please skip the next paragraph.

I have developed a constant headache on the right side of my head and my eye and mouth on that side is drooping a little, like I have had a stroke. I have also been suffering from nausea and a couple of bouts of vomiting after I’d taken my hormonal medication. But it is not like normal vomiting, it lasts about an hour and is accompanied by an absolutely excruciating headache that feels like my head and neck is about to explode. All I can do is sit with my head in a bucket while Neil cleans up my mess and tries to massage the headache away. Unfortunately, nothing can get anywhere near where the pain is. Also, more recently I have lost more sensation in my lower legs and nearly all sensation in my bladder and bowel, other than a constant tingling and feeling of downward pressure. I am still able to use the toilet, but it is getting more difficult to control.

So, what does all this mean? Well, I assume that it will get worse and this is quite scary. In fact at times it is downright terrifying and I don’t know what to do with that. Next week I will call the hospice and arrange for them to come see me or at least to update them on my condition. Due to the nausea and vomiting I am now unable to take most of my medication, including the hormonal drugs from my oncologist , but I have increased my dose of cannabis oil and will continue to do so as it helps to keep me relaxed, helps with the pain and is supposed to help with nausea. I am tempted to give up completely on the other medication, repurposed drugs, supplements and my diet and just eat whatever I want (when not feeling sick) and have pretty much been doing that for the past week. However, maybe it is my deep rooted sense of Jewish guilt or just some little ray of hope that is still burning somewhere deep inside, but I am really having trouble just letting go. I would love to stop worrying about doing the right thing and just be able to relax but I cannot get to that place. So today, when I wasn’t feeling sick, I did start taking a new repurposed drug and added back some of the old ones. Part of me feels that I have to keep fighting, even though I know that it is unlikely to make any difference now. But there is always that niggle saying “what if I haven’t done enough?” “What if that one extra thing might make a difference?” Damn it niggle – just go away!

So, you can see that I am now wrestling with myself. Part of me just wants to give up and say enough is enough. If this is going to be really painful and unpleasant them I just want to get it over with now. But part of me is scared to do that as giving up is not really in my nature and I am afraid that people will then think I gave in too soon. Aargh!

So anyway, this is what has been going on. I was actually working on another blog which is not finished but if I do get a chance then I will upload it if possible.

For now, I cannot really write any more. I need a little snooze.

Future updates will probably come from Neil via e-mail or WhatsApp. I am not going to say goodbye but I will say that I have really enjoyed writing this blog and thanks for reading!

Yours in spas and safaris,

Xoxo

Just Jen

 

 

Author: Jen

Jen Ainger is a 47 year old cancer babe, previous Pilates instructor and owner/manager of Eltham Pilates & Pilates 4 Scoliosis. Born and bred in Fredericton, New Brunswick in Eastern Canada she moved to the UK in 1993 (and now would like to tell you that she knows her “pants” from her “trousers”). She trained with Body Control Pilates in 2004 and opened the Little Pilates Studio in Greenwich soon after. The studio was sold in 2014 and she saw clients in her home studio until being diagnosed with terminal breast cancer in July 2018, a life-changing diagnosis that set her off on a whole new path in search of healing, a journey being recorded in her blog. Jen is currently living in Eltham, Southeast London with her husband, whippet and 4-year old son. (Jen is now trying to raise money to cover the escalating costs of supplementary treatment as mainstream medical treatment can only offer palliative care. You can help out by donating through her GoFundMe page by clicking on the link in the menu at the top right).

7 thoughts on “Update – final one?”

  1. I can’t imagine anyone thinking you have given in too soon. If respect and admiration for your courage could heal, you would be whole now.

  2. Love you brave lady. Enjoyed our day on Saturday, talking about the world and all that’s in it. Fight as long as you can, but when it’s enough it’s enough my love. No one will ever think you should have tried harder, you’re an inspiration to all who meet you or hear about you. You’ve fought a long hard fight and I’m so proud of you. You’ve kept your humour, enthusiasm and energy throughout. Do what you need to and make everything as easy as can be for you… We’ll all help where we can 😍😘😘😘 Tracey xxx

  3. Ah Jen, you are and have been for as long as I’ve known you, one of the most stubborn, quietly (mostly) fierce, and dedicated people I have ever known. You have persevered through many challenges, including the knee stuff, the wrist stuff, the crazy neighbour drama at flat, and oh so much more. You are a tough one. You’ve never, even given up too soon. Certainly not this time. You are so special… all of the ABBA gorgeousness. It looks as though this may be your Waterloo. You’re fighting the good fight. I, too, harbour that ray of hope, that niggle of maybe. And I also know that it’s just not part of who you are to let go too soon. So when you do feel like you need to rest and eat chocolate and bask in the love of your family, friends, community of people in UK & Canada and elsewhere, please do that with a peaceful heart, my friend. Let go & fly, like jumping off a swing at the park.

    So much love and admiration for you, my Reffinej… ❤️❤️❤️❤️❤️❤️❤️

  4. Well, what to add to all these. I have nothing but admiration for you and your courage throughout this cruel, cruel illness. Sending you lots of love, Caroline xxx

  5. Dear, dear Jen. I don’t know you well but I feel so close to you since you invited me to share your blog when we met by chance in the park. I think of you frequently, at least once first thing everyday, with the
    greatest admiration and love and awe, hoping that you will have a powerful sense of the cumulative love of all of us that read your blog surround you with. Thank you so very much for sharing your truth with us all so that we too can follow your path with equal joy and humour and fortitude.

  6. My dear Jen, throughout the years you have inspired me for so long with your spirit, determination and perseverance…even when dealing with this horrible illness…I have no doubt at all that you’re putting up and good fight. There’s a time for fighting and a time for enjoying the small pleasures in life as well, so I’d say go for it! I hope you can take some comfort in knowing that I and many others are thinking of you every day, surrounding you in a light of love and healing and peace. Love you xoxoxo

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