Patricia Brown Clinic

'LIFE' Blog

'LIFE' Blog

Remission Days

Posted on September 2, 2017 at 7:00 PM

I thought I would get this blog post done a few weeks after finishing treatment, this was the post I was waiting for, the 'I Did It' post. But when I'm actually writing this is now sometime after chemo finished, its well over a year and a half ago.

I had my last chemo on the 28th January 2016, that 12th one had finally been and gone. You walk away with a strange mix of feelings, I was ready for the end of treatment, I was tired of the whole chemo procedure, tired of having needles and my veins had held out for me, but after that final one I knew they were closed for business and if they 'd of had feelings and a mind of their own, I wouldn't of blamed them to say they'd had enough. My routine of chemo day not all been about hospital and doing the ritual tea at my mum and dads had worn off and those last couple all I wanted do was too go home and sleep. The pain in my arms from the chemo had started to build up and up and I was definitely getting to where I did not want that anymore. For as many reasons as there were to be more than relieved to walk away from the chemo ward, you are left with a strange longing to stay. Not for more chemo, you want that to be done and behind you, but because the hospital becomes like your safety net, even for a medical loathing, hospital phobic like me. But the staff I came across at the North Staffs were so amazing, bonds were built and to walk away knowing you no longer had the regular meetings with them was just strange. Even stranger, for the cancer I had was the period of waiting for my scan, 6 weeks. During treatment you are in a little bubble, but that six week period you are back into normal life, your giving yourself some recovery time. But for the first time in at least 7 months there was no hospital appointments, no blood tests, scans, nothing, just hospital free life. So you slowly start to get your 'normal' back. You find yourself easing back in quite nicely to your normal. But then, you have to go back into hospital world for your scan and you don't know what they will show, will you stay in the land of normal or will you be back to hospital world because things haven't gone as they should?

I had my scan in March and a couple of days later I phoned my support nurse for the results. I will never forget those words, it was a full remission. That meant no radiotherapy, no more scans, no biopsies to see what was left, no operations, I'd got 'normal' back. I'd be checked every 3 months, then going to 4 monthly but other than that I'd got my second chance at life. So normal is what you do, I started building back up at work, the neuropathy from chemo, the pain, the numbness did bother me daily at first, intensely at first, but gradually it gets better, I don't think it will ever be back to how I was before but I think its a small price to pay. I had lots of aches and pains in my feet which again gradually have got better, at the hospital they always say to give yourself time, but you don't get it, all this time on I get it, you just need your recovery time. Mentally, during treatment I think you go on autopilot, just get on with it as what choice do you have? The months after can be strange as I think it hits you what you have been through. But there are many positives, I found a respect for myself I didn't have before I'd been through a lot, I said I'd walk out of chemo looking how I walked in only healthy and I did, my hair had stayed 100% and even though the hair loss subject still gets mixed reaction as I have said before, keeping my hair was part of my fight, cancer was not taking anything away from me, I was fighting to beat the cancer and fighting to keep myself, through an amazing medical team, supportive family and friends and my own determination I succeeded. But there is a flip side to this, you look like nothing has been wrong, which is what I wanted, but some people can quickly forget, some dismiss what you have been through, assume it couldn't of been that bad because you still have your hair, some want to take away what you have been through by saying 'your hair probably wouldn't of gone anyway'. I don't need to defend myself, but the simple facts are, yes I would of 100% lost my hair if I had not used the scalp cooling treatment. Actually it was quite bad, the mass when I was diagnosed was huge and very close to major blood vessels, had it of been left undiagnosed much longer, I may not of had a chance to fight the cancer, to be blunt, it could of been it quite quickly. I wasn't sick throughout chemo, but I was on strong anti-sickness to start with, yes other than certain things I felt relatively well throughout, but looking back I was so ill before chemo started, that the side effects from chemo were an improvement to how I'd felt before. I was positive all through, saw the humour wherever possible, a small few dismiss this, again assuming the only reason I was like this, was because it wasn't that bad or I was in some sort of denial. I could of wrote in this blog all the negatives, but how would that help? You have no choice in cancer and if it chooses you then you do have to get on with it, find your inner fight and fight all the way. I chose to fight my way it amazes me how some people cant just say you did good and want to pick at everything and find faults that aren't there. Cancer and chemo is hard, the hardest thing you can probably ever go through, but you can do it. I chose to be positive and so wanted to write positively in the hope it can make others believe that they can do it too, give them some courage and reassurance. From many comments I've had from people who have looked at this blog either newly diagnosed themselves, or family/friends of people starting the cancer journey, it has done this and that's all that matters to me.

Living 'normally' is amazing, you aren't the same person afterwards, but again I don't this has to be a negative. It certainly makes you appreciate everything. Since chemo finished we have organised a party for family and friends and this was a fundraising event for the chemo ward, we had an amazing night and raised over £4000, all of the donations and raffle tickets bought came from family and friends and we are so grateful for everyone's kindness. This money we designated to go to Patient Comfort and Nurse Education. through determination into turning my experience into a positive I soon got in touch with Paxman Scalp Cooling, the company behind the cooling cap. My story went to the National Press and it appeared in many online publications, such as the Daily Mail, the Sun, who brilliantly named me Coldy Locks! Network She, Paxman's website, Huffington Post and many more. My story managed to get down to a consultant in London, who recommended scalp cooling to one of his patients, I have been in touch with her since and it was reading my story that gave her the courage to not only use scalp cooling but also to fight the cancer, her own words, and this is all I ever wanted, if my experience could help one it was all worth it, knowing it has helped many more means everything. I knew then I had done the right thing by making my story public. I've been down To Guy's Hospital in London to take part in a Paxman Scalp Cooling, myself and two other users gave a talk on our experiences to a large group of oncology nurses. I am an ambassador for Bloodwise and just starting the buddy scheme for people newly diagnosed through the Lymphoma Association, so I feel I'm giving back. Its also for me as the after cancer period is mentally weird, some days it feels like it never happened, other days it feels like it was only yesterday and you do have to face it all over again with every check. For me pushing it aside like it never happened is not the way to deal with it. It will always be part of life for a good while, everytime a check up comes round, but by doing something productive from my experience I feel I've dealt with it far better. I've also just finished my qualification to teach further education, not easy at the start with chemo brain, but its something i've wanted to do for years. Getting that certificate through the post was another reminder that there is life after cancer, it doesnt have to stop you, dreams and ambitions can still be fulfilled.

I don't know why it has taken me so long to right this post, maybe its a case of not wanting to tempt fate. You don't want to brag about been in remission and because your way of thinking changes a little. All that matters is your well today and life is worth living so get out and do it. For all the hard times, there were plenty good times and lots of laughs, good memories were made in the worst of times, and after everything I wouldnt change a thing. If I could sum up in one word how I feel after it all, GRATEFUL would be it. It seems easy to say now that for anyone newly diagnosed it goes quick and you will get through it, but it shouldnt be forgotten that those of us who say this were once at the start of the cancer journey oursleves, we may look back and wonder how we did it, but you do just 'do it' and you get through. So to anyone newly diagnosed, power through, you will get there. It is each person's individual journey and do it your way. One day lets hope the world beats cancer for good, but for now we just have to keep fighting and in the words of Rocky, which played its part in my journey, "Its not about how hard you hit, its about how hard you can get hit and keep moving forward, that's how winning is done"   xxxxxxxxxx

 

Categories: Cancer and Me

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Truly inspirational Nad, I only found this out today. I just want to wish you every success with your lecturing. Doing the blog must of been tough and empowering but well done you for sharing your journey of beating cancer. I'm sure your story, true grit and determination will be a great support and comfort to many others❤️
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