So my treatment has now started. I have had two lots of chemo, and more anti’s than you could shake a stick at. Anti-sickness, anti-fungal, anti-viral, anti-sleep and diabetes inducing drugs (steroids), anti-infection injections and tomorrow I start the pentamidine again (which is an anti-lung infection drug). So the plan is still the same. Follow the same course of treatment as before until I am back in remission an then the big decisions are going to have to be made. I must admit I am tired today but not too tired to go out and find a church to attend and it seems that the one I found has connections with half of Glenelg. There are some people who may think it is funny (odd) that I still want to go to Church especially now the leukemia has come back, but there is no issue about me looking for blame, looking to point the finger; It is what it is. Worse things happen to better people all of the time and trying to look for answers to the big question of WHY will just drive me mad so my great plan is just to take this one day at a time. I have been told this is probably going to be a rougher ride than last time but that does not worry me because we have done it before and I know that we can do it all again. xx
This has been the longest and shortest week of my life. Yesterday I spent the day behaving like an upset toddler, refusing to pack until the very last minute. However no matter how amazing I may believe I am I have yet to find a way to stop time ;o) So here I am back in B7 of the Beatson and the poking and prodding has began again. I forgot how much they like sticking sharp objects into people and by people I mean me! So this week has been one of highs and lows – of being confident that all will be well to being terrified of all the things that can go wrong. This was never part of the plan, I have just been accepted to train for the ministry, to do my Masters and was even beginning to understand at least some areas of my job in the doctors surgery (just don’t ask my boss to support that comment ;o) Cancer was behind me. Things were going right and now…… Well I have allowed myself a couple of days of negative thoughts, of having doubts, of being, well being terrified but no more. How can I be negative when everyone, and I mean everyone, I have spoken to has been so positive. We have go this. If it was not for you lot I would probably be weeping in a corner somewhere but that is not an option. So tomorrow I get my wires put in and then we sort out the plan and sometime soon I start to get the good drugs and this time they will work. I don’t have an answer to why this has come back and I don’t know what tomorrow will bring but today, today I know that I am doing ok, that nobody could ask for more support and that at no point do I have to do any of this alone (well apart from the poking and prodding that is ;o) because I have you, I have my family, I have the medical team and I have God and together we will get there….. wherever there is!!!!!
I wish I could say that I am doing ok, but the truth is that I am not sure I am. I am so scared and am trying to hide that from everyone which is why this post is not going up on Facebook. I had just started to get my life back to find a way forward. I was doing good, great even. Now I am left hoping for the best and fearing the worst. I don’t think I am strong enough to do this again but I have no option. I just want someone to tell me that it is all going to be ok but I know that they can’t. In truth I think this must be what drowning feels like but I am not giving up – if I paint on a smile for long enough I am sure that I will get it to stay and if I can convince all those around me that I am doing ok then maybe I can convince myself.
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.