Cant believe I haven’t updated this blog in so long.
So generally I’m doing really well. Been in remission nearly 2 years now!! Im now doing updates on my Instagram if you want to continue to watch my story! Keep you up to date on my dogs, knitting, health and fitness obsession!! @emmapaine87
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Taking a moment to try and focus on the positives of how I’m feeling right now. I find it too easy to get bogged down in the negatives…. to whinge… and feel sorry for myself. I get so fed up with feeling tired and kind of “meh”. About having to make choices about what to do so I don’t regret it the rest of the week. But I decided I need to try and pull myself out of a bit, its too easy to wallow, and I find it even harder in winter so I wanted to do a post to try and highlight to myself how far I have come in the last year!!
This time last year I was a little baldy….. recovering after a round of intensive chemo. All my treatments and major infections finished in March/April this year. After my fungal infection I was so rough, and I’m still amazed that I made it through that as well as I did. And further to that I can’t believe how far I have come since then.
I’m now back at work 3 days a week, almost full days now my fatigue and concentration levels are improving. I’m teaching a yoga class and loving it, I’ve found a new joy for teaching yoga and feel like I’m really teaching from my heart rather than just delivering a class plan. I’m getting out with the dogs on the days I’m not working, enjoying the fresh air and joy they give to me (think I would have lost my sanity without my boys!). I’m managing to drag myself out to do the odd bit of socialising (something I still need to work on!!). I’m getting back into the gym throwing a few weights around now and then. Heck, I even managed to run a 28 minute 5km the other week!! How many of my social media friends can do that and their bodies haven’t been through the trauma of fighting blood cancer god knows how many blooming times!! Ha ha!!
The body is a truly amazing thing. But even more so is the mind! Sometimes I think if it wasn’t for cancer I don’t think I would push my body as hard as i do. But I have such a huge drive to keep my body fit and healthy so I feel good, improve my fatigue levels and of course prepare myself for the next battle whenever it hits me!
Mini health update: I’m doing really well…. blood levels are fab…. I’m even having venesections to reduce my iron (ferritin) levels in my blood. I had a virus/coldy thing the other week and I managed to fight it off with no hospital intervention too!! Wednesday I’m having some pain relief injections around my spine to try an reduce my pain levels in my lower back, so fingers crossed that will do some good. The following week I’m actually doing some of my “late effects” tests. Getting my bone density checked, my lung function, and all my hormone levels checked out. I also want to ask about achy joints, as I’ve noticed at night my shoulders, hips and of course back grumble a bit. So will be a long day, but I’ve got drinks to look forward to in the evening with my old work crew from Aimia!! 🙂
So if anyone doesn’t want to know about my sex life (Mum/Dad!) then close the browser now, anyone brave enough to continue then do.
Well this isn’t a blog about my sex life as such, more my lack of sex life and drive! So I saw a video floating around facebook the other day (http://www.ladbible.com/entertainment/film-and-tv-people-cant-quite-get-over-the-most-shocking-naked-attraction-ever-20190905) and it made me realise how long it has been since I even thought about sex, let alone had the passion this lady does! Its been several years since any sexual encounters and I have no desire to bring the dry season to an end. I find even the thought of sex makes me tense up and feel anxious, and not because of any (unusually) bad experiences, just because the idea kind of freaks me out a bit.
I think I’ve almost become a bit asexual. I don’t seem to be attracted to anyone. Of course I recognise that people are attractive, but i don’t find myself sexually attracted to anyone. I even can’t enjoy a game of picking out favourite celebs to put on my “To do” list as I honestly just don’t really think about that sort of thing anymore, I kind of block it out and feel a bit icky about it. I don’t know why but its really difficult to explain!
I’m sure all the medics would say that this is perfectly normal, etc etc. but that doesn’t mean its right?!? I mean at the moment I don’t miss it, and I haven’t for a long time now, but at 32 I’m a bit young to write off any sex life surely?
I’ve also been trying to think of the many reasons why things are like this for me:
But anyway…. I wanted to bring this up as I think it isn’t something that is discussed often and I think we should be more open about these things. Interested to know any of your views on the above if you are brave enough to share your stories!
So I am “clincally well” and to be honest I mostly feel pretty good! My full blood count is all pretty fantastic given everything I’ve been through less than 6 months ago! ( HB 118, platelets 103, neuts 2.43 ) And at my last biopsy my bone marrow was showing remission!! Whoop whoop!! (Now just got to try and enjoy this remission rather than sitting and waiting for the numbers to drop and the next relapse to come!!)
I have good days and bad days with fatigue, most days I hit some form of a wall at some point. It might be that I just have to go for a lie down for a bit, or it might be that day is a bit of a wash out. Its all about getting the balance right with my daily activities, and despite having experience dealing with fatigue in the past I still never seem to get it quite right.
My friend shared “the spoon theory” a few months back and it resonated with me (See image at the bottom). I seem to frequently use too many spoons in one day (or over a few days) and then end up with less and less spoons for the remaining days of the week.
Take this week as an example; This has been my first week properly getting back into work, now my laptop is finally sorted. I cycled into work doing 2 half days on Tuesday/Thursday, planning a rest day in between. Now did I actually rest on my rest day? Of course not!! I still went and walked the dogs, met my mum for coffee, went to the hospital for a blood test, etc. Consequently I’ve got to Thursday and I’m exhausted. I know I have hardly any spoons left for tomorrow, so aside from my occupational health appointment I doubt I will be doing very much. This then frustrates me as I hate a wasted day!! I need to find a way of balancing things out over the week, and learning that even things like meeting someone for coffee drains my energy.
Having said all that despite not feeling any more energetic in myself, I am doing loads more with my time. Meaning that my fatigue must have reduced, I’m just overdoing it slightly!! So with this build up of work time occurring I have to allow for how that is going to affect me and reduce my activities on my rest days accordingly, even if psychologically I find this tough!!
Returning to work and teaching 1 yoga class a week has been interesting over the last few weeks. My cognitive processing has slowed down massively!! I have to think about what I’m about to say so much more, had sometimes words just fail me!! I seem to forget things really easily too. One thing that I’ve really noticed is whilst teaching in yoga I just can’t find the words for body parts, or I mix them up (call a knee an elbow for example). Now I’ve always done this occasionally but its happening several times in a class and even more times I nearly say the wrong thing but catch myself before I do it!! I try to laugh it off with the class, but it is frustrating and a little embarrassing at times! My therapist has assured me that this should improve with time, as my brain gets back into work mode, and as I spend more time communicating with people. We believe it to be “fatigue brain” rather than purely “chemo brain”. Also a “you’ve not done much with your brain for the last 12 months” syndrome too!! Just shows that although I put a lot of effort into trying to keep my body strong, I wasn’t doing quite enough to keep my brain strong too! Do any of you have any tips for improving this?
It also surprises me what things can be daunting about returning to work…. I’ve found lots of it anxiety inducing!
Did you manage to catch the BBC programme “War in the blood”? If you didn’t and you have any interest in how science is progressing then I recommend it as an interesting watch. It will also give you some insight to what parts of my life have been like fighting this disease!
It took me a few days to build up the courage to watch the programme. I’m on a few different blood cancer forums and heard several emotional reviews, but curiosity got the better of me and I decided to give it a watch. In some ways I’m glad I did, in other ways ignorance was bliss!
The programme follows the journey of two patients on trials for the new(ish – this was filmed in 2017) CAR T- cell therapy. CAR T-cell therapy is a treatment “described as being the beginning of the end of cancer”. Its a really clever immunotherapy treatment that essentially rewires your immune system to identify and destroy cancer cells, without the same level of overall destruction as chemotherapy. (They explain it more eloquently in the programme). At the moment I beleive the therapy is available for acute lymphobastic leukaemia patients and is just beginning further trials for acute myeloid leukaemia (AML – my strain of blood cancer).
Watching the programme was hard going for me. I’m in a very similar situation to both Graham and Mahmoud in that I have tried pretty much all options to fight my cancer. Luckily my cancer seems repsonsive to chemo, to be able to get me into remisison even if it is only medium term, BUT all the specialists agree that my cancer WILL come back. Maybe in 6 months – 2 years – 10 years, who knows, but it will come back. The one thing we are hoping for is that research has progressed in that time and the immunotherapy drugs will be available for me to try.
The tough watches in this programme for me were
a) Watching the patients suffering throughout the treatment brought back lots of flashbacks to my previous hospital stays and some unwanted memories
b) Watching the patients suffer the side effects is like a glimpse into the future of what the treatment could be like for me
c) That the treatment might not be the wonder drug I’ve been waiting for. It might not kill off all my cancer, or it might and it might still manage to grow back again. It kind of crushed my hopes!
So all in all I haven’t been feeling too cheery about things the first few days after watching it – however, a few days on I’ve been able to further reflect on things. Thinking about how much medicine has progressed in the time I’ve been ill. When I was first diagnosed in 2004 a transplant was considered far far too risky for me, yet here I am 15 years later having survived two transplants (and various other treatments) all due to the progress of medicine in that time. So I’m going to try and claim back some of my hope, and put my faith in the scientists and also say many thanks to people like Graham and Mahmoud who put themselves out there on these trials so that science can learn and improve treatments for everyone.
Not wanting to take away from the recent good news but I have hit some stumbling blocks in my rehab……. As ever there is usually something to get in my way!
Two weeks ago I booked a VERY last minute holiday to Greece (booked it on the thursday and flew on the sunday!). People that know me will know I’m not usually any good at doing impulsive things like that but I had an awesome time. Was so nice to get away, feel the sun on my skin and just enjoy a break! (Of course my brain didn’t let me entirely enjoy it as I was stressing about hospital results and the recklessness of paying for the trip, etc, etc but the good moments outweighed the bad)
Unfortunately on day 2 my back completely seized up to the point that even sunbathing wasn’t comfortable. I had to bail out of doing some activities I wanted to do, yet again being commanded by my body. Fortunately it eased a bit over the week, but was hideous on the plane ride home.
Since being home its been a bit stiff, but not too bad until tuesday when I suddenly started getting nerve pain (potentially sciatica) tracking down my left side. I consider myself to have a pretty high pain threshold, but thursday/friday/saturday it has had me swearing and screaming in the pain when it sets in. I almost vomitted at one point and have spent several hours where I have been too scared to try and move. So once I’ve been able to get moving I’ve then spent the remainder of the day pottering round the house to keep it from seizing up.
So despite being in “remission”, this week Ive ended up speaking to more doctors and nurses that I would on an average week for my blood cancer!! With having my history even just sorting out pain killers isn’t a simple task. I’m advised against taking ibruprofen based drugs as my platelets are a bit up and down, also it gives me bad reflux so its not pleasant for me either. So I’ve been dosed up on codeine, paracetamol and diazepan, which seem to help with the overall pain, but still don’t touch the acute pain I get when the spasms.
Although I’ve had problems with my lower back over the last few years, I have never been in this much pain with it and I’m starting to get concerned. Tomorrow I’m heading back to see both my chiropractor and my GP. I would really like to push to try and get an MRI scan done to check there isn’t anything more serious going on. Wish me luck!
Finally some good news. My latest bone marrow biopsy sample as being in remission, i.e. no cancer cells could be found.
Now, although this is good news I am wary to get too excited. All this really means is they didn’t find cancer in that particular sample. And given my track record of relapsing (4 times so far!!) then we all agree its highly unlikely that I am “cured” its just all gone to sleep for a little bit. How long that little bit is? No one knows…. months? years? who can tell!?!?
Now the challenge for me is to try and get on with my life. Take advantage of the fact that I’ve got a guaranteed treatment break for at least a few months (Assuming I avoid any infections of course!). So I need to take the plunge and start allowing myself to plan a few things rather than living in fear that things will end up being cancelled. Take the time to start doing rehab, get myself stronger and prepared for the round 6 of the fight!
Living with ‘incurable cancer’ or a chronic illness it becomes hard work to plan anything, or to make any major commitments in life. I find I avoid planning things so I can avoid the disappointment of not being able to do them. Too many times in my life have I ended up having to cancel events or sell tickets because I’ve ended up in hospital with infections etc. I think its one thing that unless you are harbored with the uncertain world people like me live in, you will completely take for granted.
Today was my kings appointment. Blood test and biopsy done. Initial blood results not overly fantastic but not hideous either. My platelets are still lower and now my neutrophils have dropped down to 0.58 too. So not a great indicator, however it will be the biopsy that will really give us any answers (assuming its a good enough sample to do so!) So now I’m in the limbo time of waiting to see what the results are. Waiting to see what the next few months might look like for me…. and its all this waiting that I can’t bear.
When I was chatting to my therapist on tuesday she used quite an interesting analogy. “If you are waiting for a train and you are told its going to be delayed by 2 hours would you just sit there and stare down the track waiting for it to appear? – No, you would go get a coffee, make a phone call, etc. ” So putting this into the terms of my life, I’ve now got around 2 weeks to wait around for my bone marrow results. The one thing I know is that its unlikely things will change in these next two weeks, so why not take advantage of that, why not make the most of the time when I’m feeling good and do something I want to do.
So I’ve booked myself a week in Greece……. F*ck it!! The sensible part of me is trying to argue against the cost, etc and all that. But another part of me just thinks I should take advantage of a good situation and just go for it!! My savings are going to run out at some point, might as well spend them on fun things to remember!
Wow – 2 months since my last update. There has been many a day when I have written a blog in my head, or thought “that would make a good topic” but have never got round to actually writing it down. Have a feeling this could end up being a long update!
I think my reason I have ended up not sharing anything is because I’ve been feeling pretty “meh” – sort of nothingy. I’ve found it pretty hard getting back into things since my last big infection and have found it mentally really tough to deal with. Lack of motivation to do certain things and to build myself up and generally feeling a bit down about everything.
Updates:
I will update on wednesday with my blood results – someone poke me to remind me. And poke me to remind me to blog too!! Its helpful for me to do it and I’m hoping its helpful for some of my readers too!!
Yesterday was a day at Kings. I always find these days draining both physically and mentally, not many happy memories in that hospital and a lot of time to think whilst sitting and waiting!
As it turns out it was a very very productive and scarily efficient day! Arrived and my CNS was there available for a chat straight away, within 10 minutes of arriving my bloods had been done and I was on my way to CT for a follow up chest scan to check the state of my lungs. Then straight into a bone marrow biopsy. Straight onto my consultation and finally straight onto my DLI (top up cells). Pharmacy even delivered my drugs to me on the ward so I didn’t have to waste extra time queing for them. It felt like there wasn’t any wasted time at all!
My CNS did my bone marrow biopsy which gave us a bit longer to chat. Through chatting it made me realise how worried they were about me during my last infection. One of my nurses at Peterborough also told me the other week too how worried they had been there. That they hadn’t seen anyone with that relentless fevers for that period of time for a long long time. To quote her “You are made of strong stuff – that would have killed most other patients”.
It makes me realise that over the years of fighting this disease how blaze both I and friends/family have got about these infections. Yes I knew I was very poorly, but I think we forget how quickly it all could have turned into a very acute situation. How easily the outcome could have been so very different. I had neutropenic sepsis. I was fighting an unknown infection with no immune system and the infection wasn’t responding to the antibiotics/antifungals. If we hadn’t managed to boost my immune system with the GCSF injections when we did then I honestly don’t think I would be here right now. The injections were a risk but they were the difference between saving my life or not.
I know you rarely gain anything from dwelling on these things, but I’ve just been trying to give myself some perspective. Give myself a bit of a break for how tired I still feel now. Why its taking me so long to recover both mentally and physically. That I can’t expect to just bounce back!! To feel grateful for just being alive!
A quick update on where I’m at
Emma's fight against MDS 