Monday 8 April 2013

End of a journey and the start of another...

Here I am Monday 8th of April 2013 (yes April, not December as it may appear!) and it is the day before my final chemo of this course. As I reported last time, things have gone well and I feel positive that this will be my last one for at least the rest of 2013. It is hard to imagine, a summer free from the day in, day out hardship of active treatment. Less hospital visits, less sickness and maybe a chance to build up some fitness and enjoy this oppurtuity I have of being in a new country with so much to explore. Obviously I will still have my problems but they have to seem less when you take the chemo out of the equation!

While I am sat here feeling very happy about my own situation I am also dealing with a deep, deep sadness about what is happening to my step dad right now. As you know he had his biopsy 2 weeks ago today and since then I have been waiting and waiting for the chance to bring good news. Unfortunately this is not going to happen so here is the situation now. The surgery went well but took a little longer and was a bit more difficult than they hoped. He came out with 13 staples accross his head but feeling reasonably OK considering! It had been hoped that once the pressure had been rlieved the seizures would stop but sadly this was not the case and 2 days after the surgery these returned with avengance. So rather than the predicted 3 day stay post surgery discharge he did not come out until yeterday, just one day off being two weeks. He has been seen by a neurologist and his meds switched about and the seizures, touch wood, have stopped for the last couple of days.

Friday brough news of the biopsy result and sadly the ews was not good. We were all aware of the possible worst case scenario and it seems that is what he has been dealt. The biopsy showed the tumour to be a grade 4 malignant glioblastoma. Pretty much the most aggressice brain cancer you can get. They are going to treat him with radi and chemotherapy. As we already kew the tumour is not operable although they thing they got about 90% of it out during the biopsy which is positive. The cancer is terminal but they hope to buy some time time with treatment. At the moment the doctors are reluctant to commit to a time frame but it could be months and is unlikely to be more than a year.

I think at the moment we are all in in shock, Mum is being very pragmatic and trying to get on with running daily life. Obviously there is now the job of telling Evie to face. This I can't even imagine doing, I cry everytime she pops into my head, she worships her Daddy and  the idea of her losing him before she is even 10 is too much to bear. Luckily kids are resilient and hopefully with the right love and a lot of luck she will be OK. As for me I'm not sure what I will do. My gut instinct was to go home straight away but having talkied it through we are going to play it by ear and see how he goes with the treatment. No point me dropping everything if he is going to be OK for a while. I have to say it is pretty tough not being there right now though.

So, there we are, another tough road ahead, its a good thing we are all well practiced these! Now he will get to meet the oncologist and the radiologist etc at Lincoln and find out his regime but I reckon it will be pretty brutal. Treatment can't start for another 3 weeks as it has to be 5 weeks post surgery else the radiation will blow the wound apart!!! Nice!

Wednesday 20 March 2013

Penultimate poison....

Penultimate chemo complete and it seems this course really is kicking some cancer butt! As most of you will know I had my scans and blood checks and the results were fantastic. No visible sign of any cancer activity and my CA125 (OC marker) has dropped right down to a few points above normal which is brilliant news. Now I know this is confusing for people, its confusing for me to but basically it means, at this point in time, my cancer is under control. As my disease is recurrent OC this means it is not curable, I will always have OC but the doctors say it should be viewed as a chronic condition and as things stand at the moment there are still options open to me if and when my next recurrence shows its ugly face. So as you can imagine, this result is bitter sweet for me I am over the moon and so grateful for the prospect of a break from treatment (except the Tamoxifen which I intend to continue taking). Obviously i have a number of health issues which will unfortunately not miracuosly go away just because my cancer is currently innactive. I'm not dwelling on these things and I'm not trying to say oh poor me I'm just being realistic and hopefully helping people to understand the complexities of my disease. All I hope now is that I get a good long break and can continue ti manage this for many years to come. Who knows, maybe if I can hang on long enough, a cure will be found!

So while there has been a fair bit of good news for me this has been tempered somewhat byt the way things are progressing with my step dad. The news at the moment is he definitely has a space occupying lesion in his head, it is slow growing but is positioned in a very dangerous spot, pressing on the area that controls movement. It is unknown ant the moment if it is malignant, his biopsy is next week They had to wait a long time so the anti coagulants were well clear of his system. The surgeon is very concerned that any small anount of bleeding will be catastophic so the surgery is very high risk. He has also been told that regardless of the biopsy result the growth is inopperable so the only option will be to try and shrink it. He also has 'nodules' on the lungs, they have not made any commitment on whether of not the two things are connected yet. So anyway, he is at home at the moment, feeling pretty tired, fitting quite reguarly but trying to get on with things. Of course as a family we are beside ourselves with worry, it is hard to find any positive in the news so far. I am struggling to believe that al this started with what we though was a simple stroke and cannot believe how it is turning out. So, that is where we are now, I will update when there is something to tell.

I would also like ti thank everyone for all the goodwill messages, support ect that I have been receiving. It all helps!!!

Tuesday 26 February 2013

another bad week....

Right, I know I promised a more positive blog this time, however I feel like all the positivity has been sucked out of me, leaving just a deflated, tired, sad feeling in its place.

I had round 3 yesterday, the halfway point. I have to say it feels like this is lasting forever and it certainly is not getting easier. I don't thing chemo has ever left me as tired as this one and the aches and pains are about as much as I can tolerate without losing my mind. These seem to be getting worse as I get further through the course but that is to be expected as the toxins build up. Hopefully this means that it is doing its job, I like to think that the worse I feel, the better it is killing the cancer! Yesterday went smoothly enough, my bloods have been taking a battering, my HB is back down at 8 and my platelets 20, neuts 0.9. I am going in for blood and platelets in a few days. I have taken a few days off  this week as I am not feeling strong enough to cope with the kids so it is a hot date with my sofa and the dvd player for me! My kidney function tests are coming back with some worrying results so they are keeping a close eye on that, the last think I want after this is to be on dialysis.

This round was made worse I think by the fact it had been a fairly stressful couple of weeks inbetween. Mum and Evie came out for a holiday which we had all been looking forward too, Mum especially as she was in desperate need of a break from the stresses of John being ill and all the other implications that come along with that such as what will happen to the business, the house etc. Anyway, after much consideration and arranging an army of people to keep an eye on John (he had the neighbour cooking his meals, someone doing the chickens, someone else doing the ponies and an around the clock rota of kind people calling in with treats, newspapers and company) they arrive Saturday evening, it was so lovely to see them and a hug from Evie was just the best thing ever! Sunday morning we drove over to Galway and spent a lovely day looking around the city, stresses were put to one side by all and we had a truely lovely day. That evening when we arrived back at the B&B we got a message, an ambulace had been called and John was away back to hospital. So that was that, we headed straight back to my house and arrangements were made made for Mum to travel home. It was decided Evie would stay with me as it was going to be tough for Mum to take care of her and deal with John so I then flew home with Evie on Saturday and came back to Ireland Sunday night. It was a flying visit but it was lovely to see John, a bit of a shock to see him so unwell though, he seemed 20 years older than when I left 3 months ago.So after a delayed flight I finally got home at 2am Monday morning so was not really in a fit state to cope with chemo, but hey ho, it had to be done so it was done!

Today is Tuesday and I have just had a message from Mum that she has had to call and ambulance yet again this morning, so he has had 3 strokes in 3 weeks and this is potentially a 4th. So far they have been minor enough that he has been able to recover his motor skills and most of the cognitive ones but it is terrifieing to think that this could change at anytime. One day one of these will be more serious. So here we are, back to worrying and hoping that all will be OK.

I really think my family deserve a bit of good luck for a change, hopefully that will come soon. I have scans next week to see how this chemo is going, hoping for some good news there because I tell you now, I can't keep going through this. Until next time...... Hopefully I will be bringing lots of good news...

Wednesday 30 January 2013

Rollercoaster ride....

Wow! This has been quite a roller coaster few days and I feel well and truely put through the spinner. As you all know from me banging on, chemo was Friday. It went smoothly enough, had the same nasty sensations as last time, the burning and the tingling etc. Just being there was traumatic this time as it was well and truely full of sick people. I know that sounds funny to say but sometimes you go and the people don't seem so ill, other times they seem like they are taking their last breath. This was one of those weeks and that always makes the whole experience much tougher as it is very difficult to reconcile needing to be in the same place and have the same treatments as those people. These are the days when I feel the fear. My bloods are all droping right down, they gave me a red cell transfusion and I looking at having platelets before my next dose. I have had a rough few days interms of aches and pains, night sweats, nausea, numb and tingly fingers, burning veins and general, overwhelming fatigue. I didn't move over the wk end as basically, I couldn't! I'm coping though and I can see the fog starting to lift so it is all good. My feeling of wellness have not been helped by having two sick kids to care for, one of whom  has a real talent for vomiting all over me. Not great when you are already nauseous!

                                                     My chemo, looks lovely right?!


                                                       My sisters new puppy Ashley


In other news I saw my old friend Adam, who happened to be my little girl sophies Dad in a nice family snap shot with his newborn baby. It surprised me how it took the wind out of me, of course there is no reason for me to imagine he wouldn't go on and have a family and be happy and really its great that he can. I just couldn't help feeling a little bit bitter towards his great big happy grin.... If that makes me a bad person, well so be it, sorry folks, turns out I am only human!

Then on Monday my step Dad (only bloke who really qualifies to be called my Dad) got carted off from work in an ambulance. After many tests, the MRI shows he has had a stroke. The doctors are not convinced that is the whole story and are still now running more and more tests. It seems he has been having fits and who knows what else is going on. So my poor Mum is run ragged trying to look after Evie and all the farm and on top of it an 8 week old puppy while trying to not lose her mind worrying about John and visiting him an hour away in Lincoln. It is so hard just watching from a distance and not being able to help in any real way. I am so scared about what might happen and so scared for Evie, she loves her Daddy and she needs him to be around for a lot longer.

So thats where I am now, back for check up tomorrow. I hope I can report happier events in my next instalment!

Oh yeah and I had some extra needles this week but more about that another time :)

Wednesday 23 January 2013

Ready for round 2...

Its nearly that time again, these 3 weeks have flown by and now only 2 sleeps and its time for round two. Can't say I am looking forward to it, I'm just starting to feel a bit more human. I tell you it is bloody difficult to convince myself to go back each time, what I would do for this to be over! Mind you I nearly got my self out of it this week by attempting to burn my hand off lol! Got a hand full of steam blisters, the doctors weren't impressed when they realised my medical history, blood counts etc! Seems I am fine though and although they are bloody painful they are actuall going down really nicely thanks to the magic potion from the hospital. I have to apply it every 15 minutes and if I don't I can't bend my fingers!

Been feeling  miffed this week watching all the pictures and stories from home of people playing in the snow, all we get here is rain, rain and more rain. Evie has had a couple of snow days and revels in e-mailing me how 'orson' it is lol! I need a good sledging session in a winter wonderland to put a smile on my face and make me feel OK about being so bloody cold all the time!

So over the last three weeks I have had to go for weekly checks on my heart, kidneys etc, I go again tomorrow to make sure I am OK for the treatment to go ahead. Been getting terrible chest pains but I don't think it can be too much to worry about as they would have said. Probably just my poor old body protsting! My blood counts have been dropping and so I dread to think what they will be at tomorrow. Before this treatment started my Platelets were at 180, last week they were down to 60, I reckon I will be looking at platelet transfusions pretty soon and will definitely be due blood, not sure if they are doing that tomorrow. Hope so!

Anyways, just thought I would fill you all in quickly where I'm at. Will update post chemo.... Wish me luck!!!

Wednesday 9 January 2013

Ding ding... Next round!

I last left you (on the edge of yor seats I am sure!) Having arrived in Ireland. I have now been here for nearly 7 weeks and have settled in rather well. My host family are lovely, the kids are (on the most part) sweet, my accomadation is great (I have my very own fire to play with!!!) and the people of Ireland really are warm and wonderful and helpful and hospitible. I really couldn't have asked for the move to go better. The icing on the cake is that I was eventually granted the magic little card that means my health care will be provided without any extra cost to me. In short, I can get what I need to stay alive, pretty big news!

Once I got the good news I was immediately given an appointment at my new hospital, a dedicated cancer center with all the trimmings. It really is a great place and provides everything I need to make my treatment run as smoothly and easily as possible. I met my new consultant (a woman this time) she is lovely, no nonsense and a leader in her field so I feel in good hands. New scans were taken, blood checked, transfusion given and they confirmed that there had been minimal growth of my cancer during the delay period so this was the news I was looking for, a bit of luck on my side, about time! So from this my regime was confirmed and the date set for the 4th of Jan, meaning I could enjoy the christmas period before getting started, much appreciated considering the amount of Champagne that was being thrown at me by my host family! I was apprehensive about spending christmas in Tipperary with the maternal grandparents but in the end it was fantast (very posh though!). They were very warm and welcoming and the kids gave my the guded tour of the grand mansion, I spent the 1st couple of hours with my mouth open in total awe but I soon got used to it and settled in, lovely :)

new year was amazing, having Adi to come stay was just what I needed as christmas had made me a little home sick so her visit sorted me right out. Dublin was great and it was the best new year I have had in years!

So that leads me to now. It is Wednesday, I had treatment on Friday, the treatment went well, no nasty reactions which are apparently common with this drug. It was pretty quick. Only an hour for the actual infusion so including bloods, flushes, anti-his etc I was there about 3.5 hours, beats 2 days for the last course!!! It is one of those drugs you can feel going ito your vein and you can feel its path around your body, if you haven't experienced this feeling then it would be difficult to imagine. I can only describe it like someone is pouring acid into your vein and as it mixes with the blood a flows around it gradually burns the inside of every part of your body, its not agony but its enough to make you screw up your face and make it difficult to concentrate on anything but the feeling! No sickness to start with just that familiar feeling of being hit by a truck....

Saturday and Sunday I was not too bad but beyond that the scratchy feeling under my skin as become quite difficult to take, I also have a painful tightness in my chest that feels very constrictive. The nausea is kicking in but not too much actual sickness. I have numb fingers and toes, my head is banging and I have cramping pains through my back and abdomen. The night sweats have started, making it hard to sleep, despite exreme tiredness and my wee has turned a very toxic looking bright orange. On the bright side, all these things are tolerable, I can cope with them and I can continue to work, for now. Luckily I can easily take it easy in my job :) If this is as bad as it is going to get, I will be fine.

I have to visit the clinic on Thursday for checks on my heart, liver and kidneys, all are damaged from previous treatments and all are at high risk of further damage this time so need to be closely monitored. I will also ask if there is anything they can give me to alleviate the desire to rip my skin off!!!

Anyway, so far, so good. One down, five to go, please, please, please make this the last, at least for a few years. I will go through anything if that can be the end result!

Wednesday 12 December 2012

Emigrating!

Hi!!!! Wow, it has been a little while since my last update and soooooooooooo much has happened in that time. I don't know where to start so here is a brief resume to start with.

As I am sure you will all remember I had been told that it was that time I look forward to again, chemo time! I was waiting for my appointment to get the regime sorted etc etc. That appointment came and we got a schedule sorted, drug decided and a date ready to go. As always happens in my life a spanner was well and tuely thrown into the works and that very same day I received a call from a lady in Ireland wanting to talk to me about a job in Ireland. That was me thrown into days of deliberation, back and forth with the decision. I knew sensibly that it was a crazy idea to head off to a new country and new job and that point in my life but I also knew deep on my heart exactly what I was going to do!

I spoke to friends and I spoke to aquaintances and I spoke to professionals and I got a mixed bag of opinions. None of those really mattered though because I already knew exactly what I was going to do! Still, its manners to ask lol!

So the first phone call came on the Thursday and by the Monday the job was mine, my notice to the job from hell was in and the wheels were in motion for my next big move. It was all a bit of a whirl wind, I had 17 days to get sorted and let me tell you when half of those are work days and when you have bloody cancer to accomadate, that aint many!

Anyway, I won't bore you with all the details, only to say I don't think my Boston consultant could have been any less impressed, ha, it made me laugh a little :) So anyway, the day came round very quickly when it was time to head off, of course I gave my self too much to do and no time to do it but with my life packed in the car, for the second time in less than a week I wet off, a few stops along the way and a night spent in Cov seeing the besties. Thursday I headed off to Wales, well I tried. The weather, fate, god, allah and a few others beside all conspired against me and made it as difficult as they possibly could for me to reach my destination of Holyhead. My easy 3 hour tootle turned into a mammoth 16 hour horror ride! Several hours sat on the dual carriage way and many more driving in the pitch black along what seemed to be a torrential river in a hurricane! So my luxury night enjoying a beautiful hotel was not meant to be but hey I was just grateful to make it there alive!!!

At this point I still wasn't sure if the ferry would be running, it had been cancelled that day and I wasn't too sure what the weather had in store for the next day. TBH though I was too tired to care....

Next day, it was like it never happened, the world was bright and beautiful and calm and so after enjoying a shortened version of my fancy hotel I set off for the ferry. Now as some of you know, ferries are not my favorite mode of transport, I don't trust them, I don't have see legs and I just generally dislike the whole experience. Well in line with the rest of the journey, the crossing was pure hell! Poor old Wally had to stay in the car while I went off upstairs, as if the 16 hours the previous day in the car wasn't enough for the poor boy! Anyway, as soon as we set off the captained piped up with his ever so funny repartoire of just how rough the sea was adn then the young man brought round the sick bags. well, that was it for me, off I went and threw up twice, nice! So I took my self to the centre of the ferry, curled up on the floor and made my self go to sleep, I figured if I was asleep, I couldn't be sick. It worked and the next thing I knew, I was waking up in Dublin!

To be continued.....