I am not really sure how to start this. I want to sit down with everyone and just look at them in that kind and heartfelt way that Dr. F has obviously practised and tell them the truth. The problem is that I am struggling with that truth. I thought I had fought my fight, I thought I had won my battles and my war, but I was so wrong. Today I was told that my leukemia really is back. Today I was told that I had lost and it had won. Today I was told we have to start again and find a new way to beat this thing. Today I was told that I have to go back in to the Beatson on Tuesday and today for the first time ever I started to question the outcome. But I am home now, I know I have people who love me, people who support me and God is with me – so what more can I ask for? In my last post I mentioned something about big pants well now I am just going to have to pull them over my leggings and find my superpower, because my story is not over yet not by a long shot. I understand if those of you on Facebook are getting fed up of my drama but I can’t say that I am going to stop posting any time soon, so if you need a break I get it and if you don’t then I guess all I can say is LETS DO THIS – you, me and God versus leukemia – I know which side I would choose to be on.
So there are some days when you get up and you just know it is going to be a good day. There are other days when you get up and you know it is just going to be crap (pardon the wording), when nothing you do goes right. Then there are the days when you get up, plod along and then life goes and……. well goes and slaps you in the face. Today turned out to be one of those days!
5 weeks ago I had my bloods done and they were a little off. 3 weeks ago I had my bloods done and they were a little offer (if you know what I mean ;o) On Monday I had my bloods done again and today I heard that they were a little more off. So what does that mean? Well it means that I have to go down to Glasgow next week with my big girl pants on and they are BIG. It means that I have to have a bone marrow biopsy on Monday (which I hate as it is kind of on the painful side) and then meet with my doctor on Tuesday for the results. It means that at that moment I am holding on to that life raft called remission with both hands while the water is getting rougher and the sharks are circling. It means that I had to tell my family that today could have been better. It means that if you are a person of faith please send up a prayer and if you are not just send me some happy thoughts if you can (oooh or chocolate would be nice ;o). It means that I am having to prepare for the worst and hope for the best. What it really means is that if you have stuck along for the ride thus far things may be about to get bumpy but I am sure we will cope. Love you all xxxx
Tonight I was cleaning out the fridge (yes I do do it from time to time) when it suddenly struck me how lucky I was that I no longer had to worry about being neutropenic and then boom I realised that it is only a couple of weeks until my next blood test. Where did the three months go to? Now I know that I am ok but it did not stop me from having to catch my breath. I know how I lucky I am, but sometimes the word remission does not feel quite as safe as it should. Remission the word I could not wait to hear is now the word I cling to like a lifebelt when my bones ache from standing too long at work, or I find a bruise which I can’t remember causing, or a wake up at night sweating from a bad dream. Remission is what I was lucky enough to achieve, while so many others did and do not. Remission is where I know I am going to stay but on nights like tonight it is such a fragile word, one that can ripped apart by a simple blood test. I guess what I am discovering tonight is that while living with cancer was hell, living after cancer is a path that I am still trying to navigate. I guess tonight is just one of these nights where I have to stop trying to understand everything, the why’s and the how’s, and just give it all over to God because I know that right now I have no answers.
So I have been wondering over the last few days whether I should share this here or not. However, I have shared everything else so why stop now? After years of cancer related updates I now have anther Jade related update but this one is just a little bit different. After ignoring a call to the Church of Scotland Ministry for many, many years, I have finally gone and done something about it and on Thursday I heard that I was accepted as a candidate in training for Full Time Ministry of Word and Sacrament. If I had not had my faith, family and friends I would never have made it this far and I continue to pray and trust them to see me through the next part of this journey. Who knew that when I was given the diagnoses that not only would I beat cancer but that my life would end up here? I think if nothing else, my story shows that there is a light at the end of the tunnel you just need a little faith, a LOT of trust in God and a group of people like you to encourage, support and shine a light in that darkness. Thank you xxx
Each time I post something I keep thinking that this will be the last time, however you may be sad to know that I appear to not have an off switch. The thing is these posts started of as a way for me to process what I was going through but they have turned in to something else. They have become a way of showing (I hope) at least one honest account of what cancer and its aftermath are like and while I would like to say that it all returns to normal after the chemo is finished I am beginning to realise that there is no going back and that my “normal” now is something that I have yet to truly find.
Tomorrow I have my 3 monthly bloods taken and while I know that the cancer is not back I have to wait until Wednesday to KNOW that the caner is not back. Today, tomorrow and Tuesday are and will not be easy days, as my anxiety levels tend to get the better of me, but the truth is there is nothing I can do to change the results nor how I feel until Wednesday when I will be able to take a deep breath and move on again.
To top it all off I am also waiting for the results of another gynaecological (yes I know a horrid word) biopsy. Here is what they don’t talk about when it comes to chemo – it can cause an early menopause – but then your body does not really get with the program and starts playing up. I have explained to these doctors that I have already done my cancer bit so they need not worry about that but still they like taking little bits out of me to test every 3 months. This has really helped to put my smear tests into perspective (and ladies if you have missed yours please go and get it done as a little embarrassment is so worth it in the long run) and I am glad that I got myself checked out, I would just like to have these results as well as it is the waiting, the not knowing that is the real problem.
In saying all that, while waiting for results does feel like everything stops or at least slows down, that is not actually the case. As of the middle of March I will have started my new job and I am so looking forward to being a contributing member of society again. The leukemia may have attempted to break me but it could and has not won -although on nights like this I still feel the aftershocks from the earthquake which it caused in my life. But aftershocks I can cope with and peace will reign again this time Wednesday evening.
So it has been some considerable time since I have written here and that has partly been due to the fact that I have been busy getting my life back in order. However, I felt the need to update today because I have some fabulous news to share. Ok it is maybe not quite on the level of “you are in remission” but pretty close. On Saturday I went for a job interview at the Castle and I found out yesterday that I have the job. While for most people this would be great news, for me it means so much more. This is a sign that caner no longer defines me and I can now really start thinking about it in the past tense and focus instead on my future.
So this day 3 years ago my life changed forever. It is funny, but the date that one is diagnosed with cancer is kind of like the anti-birthday. I had even forgot it was today until something niggled at my conscience this morning reminding me. In these 3 years I have learned a lot of new things, things about myself, things about my family and friends, things about hospitals and their various treatments, new words such as neutropenia and how to live life without catching infections (although I am not sure a picture of me cleaning out the duck pond would be shown next to that word in the dictionary). I have learned to trust in God completely , but also to accept that sometimes He does not save the people that you would have expected and try not to question why you were one of the lucky few to make it. I have battled infections, liver failure (yellow is not a good colour on me), blood clots, allergic reactions and anemia. I have had bone-marrow biopsies, chemotherapy, PICC’s,Ports and needles inserted. I have had more injections in my spine that I thought possible and shown more bits of my body to strangers (they are probably still in therapy) than could ever be considered dignified and yet here I am. I have not come through treatment unscathed and still struggle at times (my live is no longer on speaking terms with me) but I have made it. I am still taking medication to deal with some issues and I get my bloods checked regularly (each time that happens there are a few prayers said) but I am here and I am a stronger (possibly better) person than I was at the start of this journey. So this is me 3 years down and 2 to go before I hit that wonderful 5 year mark. I remember reading the statistics of how many people of my age with ALL make the 5 year mark and thinking am I that lucky? I believe I am, but in truth none of us know what tomorrow holds all we can do is deal with the here and now, love those we are close to, be kind to others, forgive past mistakes, do our very best and never give up on our dreams for these are the things that make life worth living for.
So this is it. Today is the day. These here are my very last tablets.
As of this moment I am not longer a cancer patient but a cancer survivor. It has been a long hard fight but it is one I have won (although I can’t really say that till the five year mark). As of today there is nothing to stop the cancer cells from returning if they want to, no drugs fighting my corner, but I don’t believe that I need them. I have no idea why I made it while so many did not, but I have and I am so grateful for that and hopefully I will not waste this opportunity. In a couple of weeks time I have to go down to see the docs again and have my port removed and although I will still have to be receiving pentamidine every four weeks to stop infection, I should soon start to feel normal again (ok I know some of you are asking when I was ever normal). I just want to take this opportunity to say thank you to everyone that has supported me as I would not have made it without you and you are all amazing people. So what are my plans now? Well I do have some ideas but, as they say that is another story for another day. I will however be keeping you all up-to-date with the rest of my treatment and how life is going (are you not lucky?) because although this started off just as a way to keep people in the loop I think that maybe the fact there is life after cancer deserves a story, if not a celebration, all of its own.
So today was the day. Today I had my last bag of chemo! Now I have 3 month of chemo tablets to go and then……. What a journey this has been and I know that it is not over yet but it is almost the end of this chapter and I am looking towards the next. I have been told that I will have to keep taking pentamidine for some time, even after treatment is finished as part of my immune system is shot, but I can live with that. I will also have to have blood tests to make sure the cancer is gone but all I can do is take one day at a time and be grateful for what I have as there is not point worrying about something I have no control over. So today I will take this time to count my cancer blessings (yes there are such things)
- Today I had my final bag of chemo
2. I have people back in my life that I had lost contact with before I was sick.
3. I have a stronger better relationship with my family and friends.
4. I think I am a better version of myself – stronger and I hope more understanding of what other people may be facing.
5. I am so grateful for all the NHS staff that have made this journey more than bearable.
6. I have a stronger and firmer relationship with God.
I would not wish anyone to have to travel this path, but it is not all negative. and like any journey we take I just have to keep looking forward and stop looking back because I hope there is a lot of good stuff still to come and I am more than ready to deal with that!
Cancer, cancer is destructive in oh so many ways and not just for the person that has it. My friends and especially my family have had to go on this journey with me (and in the case of my family they had no choice ;o) and I know that it has not been easy for them and they are still dealing with issues. It was not easy when my sister was tested as a donor but was not a match, it was not easy for my nephew who wanted to help but ended up in tears at school, it was not easy for my parents to not be able to fix the problem and it was not easy for my niece who had to learn the difference between cooking times for microwaves and ovens the hard way. It was probably a lot easier for me as I had no choice and just had to deal, but still this week the shoe was on the other foot as dad was in hospital (he got out tonight) and I had to choose whether to stay up north or come down for chemo. I came down but am booked on the silly o’clock bus to go home again tomorrow.
Tonight I also realised that I have kind of being living life in neutral and waiting for the treatment to end. But what happens then? Do I continue not doing anything just in case it comes back and yes it is easy to be confident that I am cured when on the chemo but what happens when they take those training wheels away? I have started to make small steps, I am doing my degree and I am training for the children’s panel but what about the bigger picture? Ok I am very good at saying what life does not involve, no size 10 clothes, no offshore bank accounts, no marriage and certainly no kids now but I have decided that I am going to use these next few months to work out what my life does involve as once my treatment is finished I am going to try not to sit and worry about cancer coming back as life is far too short for that – take it from someone who knows.