Blue lights and chest drains...

Drama, drama, drama, I wouldn't be me if there wasn't a bit of drama to report. Since my last post I have been to that place I call my 2nd home, the hospital. I had been struggling with a chest infection for a week or so but being the stubborn idiot that I am, I refused to go to the doctor as I didn't want to end up being kept in. So anyway, one evening I became quite unwell, was unable to breath and eventually collapsed in a heap and needed an ambulance. So I was rushed of to the hospital, prodded and poked, x-rayed and scanned. Bodily fluids of several guises were extracted and eventually I was told I had Pneumonia and a pleural effusion in the lung that has not been treated in the past. When I decided to have just the one lung done before, I  should have known this would happen! Anyway, once they stabilised me the treatment was simple enough, antibiotics and a chest drain. The chest drain is not the most comfortable proceedure in the world but I have had worse. The worst part is being stuck in the bed while it is done, my drain was in for about 24hrs so I had to be catheterised which is always pleasant!!! Anyway, once I was drained and my temp was stable I was out pretty quickly, just had to return daily for the next 7 days for IV antibiotics. A small price to pay for release! So here I am with the decision of whether to get this lung done with the powder to prevent future attacks. I don't particuarly want to go through that proceedure again but equally the last thing I want is a repeat of the pleural effusion which is more than likely to happen without the treatment :(

Anyway, I went back to see the consultant on Monday and my chest is perfect (his words, not mine!). My stitch has healed nicely nad he has given me the go ahead for some light excercise. No running or anything crazy like that but I am allowed to get in the pool and get swimming (gently!) As if I can swim any other way! So this leads me to my next challenge. I have signed up for a swim the channel event, don't worry, I don't have to swim the ACTUAL channel, just the distance of 22miles in 12 weeks, easy right? Shame I am such a rubbish swimmer! It is a charity event though and so will be worth the 90 odd lengths a week. It is for a charity called Aspire who help people with spinal injuries. Having been there mself and being lucky enough to have recovered fully from my injury it is special to me to be able to raise money for such a great cause. Even better I have managed to recruit quite a few unsuspecting friends :)

In other news, poor old Widget died in her sleep yesterday, she was 16 years old and had a great life, she was an amazing dog and we will miss her greatly. RIP upside down dog xxx

http://www.mesothelioma.com/blog/authors/staff/from-olympic-gold-to-ovarian-cancer-our-interview-with-former-us-gymnast-shannon-miller.htm

I have been asked by someone to add the above link to try and help boost awareness of ovarian cancer. I hope you can take the time to have a read. Thanks.

The big meeting

Now, where did I get to? It has been a while. I think I have been for my 'big meeting' since I last wrote in here. I was dreading this meeting as I knew deep down what they were going to tell me. I had been hoping and praying that my blood test was innacurate and that the scans would be completely clear, unfortunately this wasn't to be and scans revealed small areas of mestatic ovarian cancer in my bowel and ascites in my abdomen. I felt sure this would mean straight back on the chemo but in fact the big bosses believe a conservative approach is appropriate at this time. They say the tumours are probably slow growing and that they should, in theory, be responsive to the Tamoxifen so we should wait and see. the ascites may well need to be drained, we are to see how I get on and how much pain I get to see what course of action we take. At present the pain is bearable so I'm just going with it.

In theory I was happy with this plan of action, of course I have no desire to be back on a chemo regime. However, I sometimes find it difficult to fully relax with the knowledge I have cancer cells just happily doing as they please inside me and I don't feel like I am doing very much to stop them! It is like they are having a little party all of there own and it makes me feel out of control of my body and I really don't like that feeling. The plan is to re-scan in August and see what has happened, if the tumours have spread or grown then it will be time to think about chemo. If they have stayed the same or got smaller then we know they are responding to the Tamoxifen and we continue with the conservative approach.

                   Well, they don't look much but these little feckers are charged with saving my life!


So this is my life now, constant back and forth, logistical battles against the enemy which is cancer. Of course so far I have won every time (good thing as I hate to lose!) It does get tiresome though and I would love to not have to worry about it for a  while. Also, if this continues to be active, there is no way I am going to get anywhere job wise or training wise. I would really quite like my life back at some point. I wish now that I had valued my good health in the past and not abused my body in the ways that I did. What an idiot! So much wasted time. Oh well, can't change so just have to accept it, right?!

In terms of my anaemia, not much has changed, transfusions are still regular and that doesn't look like changing anytime soon. The Tamoxifen seems to be battering my blood, I guess my body has been through so much it is now quite easily affected. This is another one of those things that I just have to accept.

In good news Wally is 6 weeks old now and is a very confident, happy, lively boy. I can't wait to bring him home in 2 weeks time :)

                                                                         Wally @ 6 weeks

Also, the sun is out so I really do feel soooooooo much better, physically and mentally. I think I was suffering from that seasonal affective disorder, in July! Life seems so much easier when the sun is shining....

mud, mud, hills and more mud....

So, last Saturday was the big day. After the event was cancelled back in April when storm force wind and torrential rains were bringing down trees and our little tent was floating away I think I had secretly convinced myself it would never actually happen! I was wrong! Last Saturday I was up at the crack of dawn loading the horse box full of everything we needed plus quite a lot more... Why not we had space! Then off I went (after a 20min lecture from the step dad that is on what I should and should not do with the horse box!) to collect Laura. The drive went smoothly and I collected Laura and we made it down to Eastnor in good time. Before we headed off to set up camp we decided to stop and treat ouselves to a big lump of steak in preperation for what lay ahead.

                                                                    Check out how pale!

Once we had stocked up on some energy and iron we headed off to the beautiful Eastnor castle  which was to be the scene of the crime. We were met by a very muddy hill and the prospect of getting the lorry up it in order to camp so it was a foot down and hope moment, anyway, we made it and had set up home and got the kettle on within a couple of minutes, I like this camping in a lorry business!

                                                            Home for the night :)

We had the afternoon to sit and enjoy the unexpected appearance of the sun, by this point however the situation had become real, the nerves were starting to kick in and there was a party of butterflies going on inside my tummy, I tried to just kick back and take in the surroundings and indulge in a bit of people watching though.

Soon enough it was time to get ready and head over to the start, at this point we met up with some old timers who were coming down to race, in fact these are the people I hold responsible for talking me into such a crazy thing! So we headed over together, dropped off our change of clothes and got tattooed up. The atmosphere in the race village was fantastic and there were so many people around, all different types of people but all of them clearly up for a laugh and to test their bodies. There were a lot of people dressed up in various fancy dress outfits, probably also running for a charity and despite the churning nerves I started to feel happy to be there and be a part of it.

                                                                    Before the start...

                                                 Waiting at the start line with the others

when it came to starting the race we decided to go fairly early on as we knew we would be slower than most and it would be demoralising to end up last on the course so we headed off in the 2nd wave. The 1st few hundred meters lull you in to a false sense of 'oh, this is ok' and we set off at a happy (downhill) run. Then, straight away you are faced with the 1st hill, it is a never ending up, up, up and it was so hard. I felt my lungs would explode. no matter how deeply I breathed the oxygen would not get into my body, this is one of the problems with being anaemic, the body cannot meet the oxygen demands and I felt this straight away. Once we had made it to the top there was a fairly flat but boggy section and some down hill mud through the trees up until the 1st hurdle which we knew must be the 1km mark. At this point I was in so much pain and felt so ill I really didn't think I could carry on and I said to Laura I wouldn't be able to do the whole thing. She of course told me not to be so stupid and of course I could do it so that was that, we were in it for the long haul!

                                                                  Knackered!!!

By the end of the 1st km the mud really had not been too bad and I was beginning to think that people had over dramatised the extent of the mud, I was wrong! OMG! At times it was up to my waist, I never knew there were so many different types of mud. Thick mud, thin mud, sloppy mud, sticky mud. We had to run through it, jump in it, climb out of it and commando crawl through it, it was AWESOME! I actually longed for the sight of each mud pit because I knew that where there was a mud pit, there was not a hill, brilliant lol!

                                                                      Loving it!!!

The pain in my lungs continued and my body ached and a new, unidentified pain kicked in but I no longer wanted to quit, I had got into the zone and there was nothing going to stop me from finishing that race. By the time we hit 5km I felt I had got into a flow and had recovered my sense of humour and was starting to enjoy my self. I found the obstacles were a good bit of added fun and were good for counting off the distance as I knew there were 10 of them so each one done brought me closer to the end. When it came to the monkey bars I didn't even bother trying, there was an alternative cargo net next to it so I did that instead and when it came to the wall, it was a no go. This was in the last km and my legs were just jelly by then, but I don't mind, there is no shame in giving it a go and not making it! As for the lakes, they were lovely, we had to swim through 2 lakes and it was a good chance to get cleaned up! I was a little concerned by how warm they were and would rather not think about the reasons for this as it certainly wasn't from the sun!!! The muddy bank was a lot of fun and a lot easier than it looked but the finishing straight was horrific, it was up hill all the way to the finish line, what a depressing sight! Just as I approached the finish line my friend Clare came running up and was shouting encouragement which was lovely, she had clearly finished some time earlier as she was already dressed and clean!

As I finished I caught a glimpse of the timer and was gutted to see it said 3hrs 45 mins, I couldn't believe it had taken that long and felt rubbish about it. What I hadn't realised was that the timer had run through the junior race before us and not been reset to zero. Phew! It turned out or time was 2hrs38, well under the 3 hour goal I had set my self and I later learned we were not last and that the last person was 48mins slower so I was pretty happy with that :)

                                                                           The end!
                                                     
I can't describe to you how I felt at the end, either physically or emotionally. I was so happy and felt it was a little personal victory, I didn't cry but only because I wasn't physically capable. I had nothing left! Straight after the race the shakes started and I felt very wobbly and sick. In our goody bags we ere provided with Mars bars but of course being coeliac I couldn't eat mine. By the time I made it back to camp I felt to sick to eat. I was frozen so we made a cuppa and got into bed for a while, I couldn't seem to get rid of the shakes but couldn't manage to eat either.

Anyway, despite feeling a bit rough we decided we didn't want to miss the evenings entertainment so we took our drinks and headed over to the race village to enjoy the party and listen to the band. When we were there we met some boys and hung out with them for the evening. I only managed one cider though, I think anymore would have finished me off!

The next morning we had a bbq breakfast, packed up camp and took our aching bodies away home, smiling that we had decided not to do the race on the Sunday too!!!

This experience perhaps doesn't sound much to most people but to me it has affirmed that I do have fight left in me, I do have the strength of character to over come and that I can achieve, all I have to do is put my mind to it.This race took place 2 weeks short of the 1 year anniversary of my broken back and pelvis, I reckon I have done pretty well to be at the point where I could complete this race. Just shows, it is incredible what the body can bounce back from. I feel proud of myself and that is not something I have often felt. I also feel grateful, I may have had a lot thrown at me and the world has tried to finish me off on many occasions but I'm still here! The Sunday was my little girls birthday, I think she would have been proud of her mummy too.

The day before tomorow...

Sitting here after a long day and a glass too many of wine and quietly pooping myself! I thought I should take this moment to write a post, just in case it turns out to be my last :-o

Tomorrow is Mudrunner, this has seemed like one of those things that would never come around and yet here we are, saying it is tomorrow. Training was going so well until the dreaded lurgy hit a few weeks ago and then almost as soon as I was over that, there I was stuck in bloody hospital again, so here I am packing in my excuses lol! The last few weeks have been a write off training wise and my general well being is a bit below average at the moment. However my will is strong and if there is any possible way I can drag this sorry state of a body around that course then I wil1! I have a feeling the event will be living up to its name and mud will be in plentyful supply. I had been dreaming of a balmy summers evening jaunt through the countryside followed by a few ciders and a bit of a giggle. I have a feeling I was delusional! It is going to be tough, but hey what an achievement and I reckon the old wreck can manage it one way or another lol! Bring it on!!!

Wednesday this week I spent at the hospital, had a whole bunch of scans to get through. the doctors have a few concerns and basically we are looking at whether or not I will need to be back on treatment. Scans are done now and I will discover my immediate fate Friday, nothing I can do now so just got to chill out about it and what will be will be. Scan day was  uneventful other than being delayed by the Olympic torch passing through Boston and I managed to squeeze in a lovely lunch with the twins and Nats two beatiful little girls so couldn't really complain about the day. :)

In other news, I went and tried out the spinning class at my gym on Monday... OMG! It was bloody terrible, the guy counted down the last 10 beats of every 16 in monotone, this made me want to hurt him! He then set us off into a full speed ahead sprint on the last track and left us in it for a full 3.5 minutes, without saying a word.... No motivation, no counting, no indication of when the pain may end, just long, drawn out, sprinting. Then once this track  was done, it was straight off the bike to stretch, no cool down, no bringing down the heart rate, I nearly bloody fell over my head was spinning so fast!! Terrible class!

Anyway, so if I survive I will blog again.... Hope you all have an easier wk end than me lol!!!

One of those moods...

Hmmmm, not very happy today. Not sure what as got up my nose really other than I'm just feeling a bit flat and fed up. I spent most of Friday at the hospital, mostly being told how poorly I am and how I need to make allowances for this and how my body has been through and is going through a lot and that I should be careful about my expectations. Well, do you know what I say to all that bullshit? F#!* off, thats what! Well done NHS, if you wanted to steal my thunder and put me in a downer then well done, you did a great job!

Sometimes, and I know I'm not supposed to say this as I'm supposed to be happy and positive and jolly all the but but I don't care, sometimes I think life is a little bit unfair! I really don't want to moan but I really never have been a lucky person, some of the shit I have had to put up with over the years and continue to put up with I reckon its about time someone else gave it a go! I'm bored of hospital, I'm bored of being tired, I'm bored of all the things I can't do and I'm bored that it is never bloody ending! Naff off bad luck, go pick on someone else. Sometimes I realy hate some of the thoughts and feelings I have. Like there are times when I see someone who has been poorly and they are all better and they can get straight back on with their lives and of course I'm happy for them, everyone deserves that chance, but at the same time I feel jealous. What a bitch! I hate that but I can't help it sometimes.

So I picked up my CA125 on Friday too,been avoind doing so and now I realise why, its because I wasn't ready for the result to not be as good as I hoped. I was was hoping for below 30 i.e normal. I got 65. So what does that mean, well, something or nothing, who knows. Got scans on Wednesday so should tell us more but what is the betting it means I need chemo??? Odds on I reckon. So here I am, waiting, again. No news on my bowel biopsies yet, who knows what is going on there. Wait and see, wait and see, wait and see.....

Anyway,  know this is a shitty post but hey, I'm in a shitty mood. Gonna try and have a run in the morning, hopefully sort me out a bit!

...every beat of my heart

Now, where did I get to? Oh yes, my heart, well my heart has always caused issues. Way back when I was 18 and training to be an aerobics instructor I wasn’t allowed to continue with the course until I had the all clear from a doctor after they discovered my resting heart rate was around 120 beats per minute. So, off I went to the doctor and then the hospital and was given an ECG, chest X-Ray, Stress test and a scan and they couldn’t find any problem other than the speed of the beats. Since then it has always been fast, it dropped a little when my thyroid was bad but generally it sits high. Each time I go to hospital it tends to be brought up and looked at briefly but generally without too much concern. However over the last 6 months or so it has been becoming very erratic, when I get ill with infection or whatever else it is all over the place and has been becoming a growing concern for the doctors. When I had the colonoscopy and experienced a high level of pain my heart rate went through the roof and of course they were worried. So when the doctor came to talk to me he ordered an ECG and the result was abnormal. They then got some other doctor to come and speak to me and he admitted me to the cardiac ward. Actually quite a scary thing to happen, I got hooked up to machines and was put on hourly obs. I was given the chat about how my illness has been putting such a strain on my heart, particularly with the level of anaemia I have been suffering for such a long period of time. They said I needed some tests and that I need to stay so stay I did. Of course nothing happened over the weekend and I just sat around in what felt like gods waiting room, I don’t think too many of those people were going to be with us for much longer and it was a pretty depressing place to be. So Monday came and things started happening and I was eventually allowed home Tuesday night, it felt like a long stay! So I was allowed out as long as I was ‘careful’ really this was not specific and so I think is open to interpretation! I have a clinic appointment on Friday so I’m guessing I will find out more then.  In the meantime, I not sure how worried I need to be so I’m going with not worried at all!

                                                                      

                                                                         My baby boy :)

On a more exciting note, today I bought a puppy :-D I can’t have a baby so this will be my surrogate child lol…. He is only 2 weeks old at the moment and so I have to wait 6 whole weeks before he can come home but I guess it is nice to have something to look forward to. He is a Springer Spaniel crossed with a Collie so should be clever but probably a bit hyper, should keep me busy. I have called him Wallace Thornton Esquire, Wally the sprollie for short lol. I have wanted my own dog since forever and have never been in a position to have one. Now I may be ill but I do have a lot of flexibility in my life at the moment so seems to be a good time really. If something does happen to me and I can no longer care for him, or I’m not around anymore my Mum will look after him so I can’t really see a reason to stop me. So happy and so excited!!!

The wrong direction down a one way street...

Just like all nasty things in life,  ‘prep’ day came along quick as a flash. Of course being the organised person I am I had not yet filled my prescription, not thinking that it is not an item likely to be kept in stock in any of the back of beyond pharmacies in the middle of nowhere I now call home. So I started the day with a nice relaxing ride (I wish!) this turned out to be a mammoth fight about going past the pig farm which ended with both me and her at the bottom of a pig shit filled ditch, great start to the day! After this little bit of excitement of I went to fill my prescription, 4 towns and 6 pharmacies later I was home and armed with the required drugs and trying to convince myself to actually swallow the first dose. Turns out I need not have worried, the lack of food available to me on the train home from Scotland the previous day combined with the avoidance of food on that day meant that there was very little action to be had! So other than extreme nausea and a banging head ache combined with some tummy cramps things were not too bad J So I had myself an early night in anticipation of the next dose to be taken at 5am, I can tell you getting up at 5am to take something that tastes that bad is really not an easy task! Anyway, 5.15am, dose swallowed and things are starting to happen. The next 3 hours I will spare you the details of but let’s just say I didn’t stray too far from the bathroom!!!

So 09.30 and its time to head off for my 10.15 appointment, sat in the waiting room surrounded by old folk, I had one of those ‘why me moments’ I must have been a good 30 years younger than anyone else in there and really that is the story of my life lately, experiencing time and time again things that should be saved for my twightlight years, if ever. After a not long enough wait I was called through for my turn, admission paperwork completed, obs done, gown changed into and cannula inserted I suddenly found myself on the table, knees tucked up to chest and with some bloke whose first name I didn’t even know shoving something rather large where the sun doesn’t shine. Straight in my eye line was a big screen showing in great detail my colon in all its glory! Now at this point I will say I had signed up for the sedation and indeed they did put something through the cannula, however I felt now signs of sedation. I remember the whole procedure very clearly and certainly remember the discomfort of every bend and turn made by the camera, sedation my a*#!....

I did have some concerns that the prep had not done its job properly as there was such a delayed start to the action but luckily I was proven wrong and the ‘corridors were clear’ lol! Apart that is, from one rogue pea, it looked giant on screen and caused untold issues as the suction devise failed to shift said pea and the machine chose that moment, half way up my colon, to break down, who else but me could be that lucky??! All that was needed though was a simple valve replacement to fix the issue, if only someone knew where said valve was kept…  ! 1st one, then a 2^nd nurse scurried off on a hunt and I lay there patiently in my compromising position until they eventually returned, equipment was repaired and the grand tour could continue. The procedure was due to take about half an hour; I ended up in there for an hour and 40 mins! Bits were removed, biopsies were taken and bleeding was treated and by the end I was sweating so badly from the pain I thought I must be having the procedure done in a sauna, I say again, sedation my a*#!!!! They say you can stop at any time, but there is no way you would do that as it would mean you have to go through the whole thing again, not a chance!  

Eventually the adventure was over and I was wheeled off to recovery, I was advised of my potential wooziness, I was not woozy, I was straight up on my feet and asking for a cuppa, followed shortly by the nurse barking for me to get back into bed and recover first…. I was bloody recovered!!! Anyway, after their set out time frame I was allowed to get up and have a cup of tea and the lovely other nurse (the one that doesn’t bark) brought me tea and biscuits, such a lovely thought but so cruel to a coeliac who has been on starvation for 26 hours and can only sit and look at the delicious biscuits L

So, it was at this point I was expecting to be told I could get dressed and they would call my Mum however that is not what happened, instead I was asked to wait as the doctor would like to speak to me  and they continued to withhold my clothes and left me cannulated, never, ever a good sign! Eventually the twitchy doctor with the progressive stutter and a penchant for sticking things in my every orifice showed up and started his speech with Miss Fahy; we need to talk about your irregular heart beat…. Urgh, here we go…

….to be continued!!!