Tonight’s Ramblings (and they are just that).

The problem with having bipolar and cancer is that you spend a lot of energy monitoring your moods.  Every time your mood fluctuates you end up wondering if this is the beginning of a high or a low but being in a shared ward means that you have no privacy to really figure things out.  Add to that the fact that the Beatson is situated right next to the Gartnavel Royal and it makes things slightly more interesting as various jokes and comments are made by the other patients and while you know they are not directed at you personally it can still be jarring

So last night I was having a bit of a down missing my family, friends, work (yes I know I am sad like that), health, the outside (yes Prisoner Cell Block H is an ongoing theme) and found myself sitting at dinner fighting back tears.  On a side note some of the food we are served here would make a grown man cry. It took me a while to get it together (not one tear fell though) and acknowledge that it was not my bipolar that was the problem I was just exhausted.  Today has been a much better day, although that may also have something to do with the homemade cheddar cheese rolls and cupcakes that were smuggled in for me.  Unless you have been in hospital long term you will have no idea how much you begin to hate the menus that are brought round and let me tell you something there are some foods that I will never be able to face again.   I am not the only one struggling with this issue and it is amazing how often the conversation comes around to food in this ward.  Bacon rolls, takeaway foods (we are banned from them), salads (also banned), sandwiches, cream cakes (banned), homemade soups with real stock, veg and meat, fruits that don’t need peeling and now we are even planning our Christmas dinner menus and let me tell you something they are amazing.

So anyway last night, after the baked potato that brought me near to tears, the conversation turned to ward life and how unique this situation is.  The four of us on this ward are cut from completely different cloth, we are nothing alike, and yet we are all here for the same reason.  Each day we get up and work together to make the best of a bad situation.  The fact that you have no privacy means that you can’t feel down or sorry for yourself for long and there is always someone there to keep you company.  Sure sometimes the ward can be loud, especially when everyone has visitors (some are louder than others) but to a person each patient and family member goes out of their way to make things brighter and cheerier for all on the ward.  Good results, bad results we all hear them and as soon as the curtain is drawn back we are there for each other.  We laugh and we joke, we share about our pasts, our families, jobs, pets, faiths, what we want to do when we get out of here and so much more.  While the chances of us staying in touch is slim one we leave here that is not important, what is important is that fact we are here now, we understand exactly what the others are dealing with and tomorrow we will get up and be there for each other no matter what is said behind the curtains (I feel a Wizard of Oz moment coming on now).  So yes while ward life may offer you no privacy the benefits you get from being here are well worth it.

Cancer 101

This morning I learnt something new, just when I thought I could not feel any more exhausted I found a whole new low.  Having got up bright and early, temp, pulse and blood pressure taken, I then organised my clothes and went to wash and dress.  Now normally I can wash and dress myself (I know I am amazing like that) but this morning I did wonder if I was going to be stuck in the bathroom until someone noticed I was AWOL and came in to find me lying in a half dressed, soaking wet puddle – now that would not be a good way to start your working day.  I was so tired that I had to sit and rest before I could leave the bathroom and then when I made it back to my bed I fell straight back to sleep.  Two hours, just two hours awake and I had exhausted myself.  On the plus side I know that as of tomorrow things will be on the up again as it is steroid/chemo day once more.

Now tomorrow should be my last day of chemo for this round of treatment and the basic idea is that as of tomorrows (and Monday’s) drugs the leukaemia in my bone marrow should be, well dead, for the want of a better word.  This stage is called Induction and is kind of chapter 1 in my recovery.  After Monday it is a bit of a waiting game as I have to wait for my system to kind of reboot itself and my bloods etc to come up.  Once everything seems to be in order I then get to escape from here ( not that it is a bad place) and become an out patient.   Out patient, it seems like such an exciting word.  I have a great friend here that I am moving in with and while I will still be having chemo weekly, as long as my bloods stay up and infection stays away, I should be able to do it from the comfort of her home (isn’t she lucky)

So the next stage of treatment is called Consolidation and basically the idea behind that is to keep having the chemo until ALL the cancer cells are dead – it is just hopefully not as rough on the system as the first lot of chemo.  So here I am just over a month since I was diagnosed and I am almost finished round 1 and I just want to say thank you to all of you who have been there for me.  Just the fact that I know that I have such great support network has meant more to me that you will ever know and while I still have a fair bit to go (ok maybe a bit more than fair) I know that with your backing I will get there, so THANK YOU.

Oh on a plus note I have now been awake for 8 hours – it’s almost a miracle ;0)

Tis the season….

I thought I knew what it felt to be tired before.  There were some days, especially this summer, when I was so exhausted that the only thing I could think about was my bed.  That, however, is nothing like the way I am feeling today.  Today I can officially say that I am bone weary.  The tiredness I am feeling is totally unnatural and pretty much drug induced.  Yesterday I was taken off my steroids and given two lots of cancer treatment one called Rituximab and one called Asparaginase both of which are great drugs but the combination of both of then has left me wiped and taken with it my witty repartee (yes I know it is hard to believe).  The problem with being this  tired is that one of the drugs has a high risk level of giving blood clots so that means that I can’t sit on my butt all day but I have to keep active so aaahhhhhhhhh.

So tonight’s high point is Christmas decoration making (don’t laugh)  There is someone coming in every Tuesday evening to do Christmas crafts in Friends and guess what I am going to go and I am going to make something crafty – go me!  While me on the outside may have laughed at that, me on the inside (Prisoner Cell Block H (ish) I know) is actually looking forward to it and I may even include photos to prove how artistic I am ;o)

Having just come back from making my angel let me tell you something it was much harder that it looks between blurry vision, numb fingers and shaking hands (all thanks to the cancer drugs and not alcohol induced) but here she is – now be amazed at my talent!!!!!angel

And on the theme of photos I feel that the time has come for me to introduce you to my new, all be it hopefully fleeting, abode.   So this is the Beatson all ready for Halloween at the weekend where there will be no craft making involved, thank goodness, but there will be a movie night, great company and lots of laughter so I can live with that.

bed friends haloween2 view2 witch1

So today we have covered Christmas and Halloween – I wonder what tomorrow will bring?

Spinal Tap

I know it has been a couple of days since I have updated here but that is due to the fact that I have had a headache ever since they played around in my spine with their big sharp needles (oh there is a sentence I wish I never had to say).  Basically they take out some of your spinal fluid to test and then inject chemo into your spine to help kill any cancer that could be in your nervous system and brain.  Sadly my head has decided that is not playing ball with this procedure and has rebelled against its owner ever since.  As they have to do this a number of times over the coming months I am hoping my brain gets with the programme but knowing my brain…

On top of this they put you on steroids for 4 days when you have your chemo (and no Louise I am not doing illegal drugs) and thus I have only had 5 hours sleep in the last 49 hours (thanks extra hour last night) and black circles around my eyes is just not a sexy look.  Not only that but the steroids also increase your appetite and while I may have lost 3 stone in the last 2 months that does not mean I can’t put it all on again on the 4 days I am on the steroids.  So yes a steroid induced, sleep deprived and starving Jade is probably something to be avoided at all costs

Today they organised a brain scan for me and yes I have one and I now have proof.  Supposedly when the doctor looked in my eyes this morning (she was checking because of the headaches)  there was some swelling, so a brain scan was arrange, but all was fine.  After that I was given another blood transfusion which I am hoping works against the pain and by tomorrow I will be firing on all cylinders again.   Every time I get a unit of blood or a bag of plasma I can’t help but feel so grateful to whoever the stranger was that is helping to save my life just now.  After each transfusion I feel 100 times better and am ready to face the next round of treatment with so much more energy and as I am getting the trial drug tomorrow tonight’s bloods are a bonus.

Thank You

Tonight, after two days of chemo and a headache that has not shifted for love or money (blood will help tomorrow), I am going to have an early night.  However before I go I would like to share this.  Not because the article mentions me but because of the amazing thing that my friends, family, local and wider community are doing.  There are just no words to describe how in awe I am of the support behind this cause (however my picture still sucks).


The positives and the negatives of life on a ward.

Life on a hospital ward is an interesting experience.  How you feel each day can at times be dictated to you, not just by your own circumstances but also by those of others in the ward, how they are feeling, what their friends and family are like, results from tests (and no closing the curtains does not make the rest of us deaf!), treatments and a million other significant and insignificant little things.

Life on my ward has changed a bit.  Every few days there is  a turn over of patients although some escapees return regularly which is nice as you get to know them and their families.  At the moment the patients on the ward are older (as with everything I am being awkward and don’t quite fit the age range) and are all bonding over their problems – none of which are insignificant (you can trust me on that) .  Now it is not that I don’t understand where they are coming from, nor is it that I think that we should be unable to say that “this suck and I am terrified that I am going to die” but it is just that sometimes I think negativity can breed negativity.  While I know my friends and family don’t want to hear me say that I am sometimes terrified about what the future now holds, (not because I don’t think I will beat this this time, but because I am frightened that it will come back like the statistics show and that next time I won’t be s lucky) I also know that I don’t have the energy to keep bouncing back from total doom and gloom all the time.  That said I am sure that I am equally, if not more so, annoying with my “chin up keep  going forward” attitude.  Add to that the fact that one of the new patients is just in for observation and keeps telling her family that “at least she is not as bad as these poor souls” and I am amazed I am not in prison now rather than hospital.  I am not a poor soul.  I am annoying, argumentative, irritating, loving, funny, caring, rude, polite, selfish, generous, kind, hurtful….pick any of one of those but I AM NOT A POOR SOUL.

Yes I may be on a cancer ward and yes I may be receiving treatment for said cancer but I am so much more than that – oh and on a side note I actually feel better than I have in months.  So far I have had no ill effects from any of the drugs, I have been exercising daily (yes, yes I know ok), I do not have to lift a finger to do anything and generally just swan around all day like Lady Muck.  I do not want or need anyone’s sympathy.  I want and need your strength and encouragement, I want you to listen to me and hear what I am saying and what I am not saying, I want you to shout at me and tell me when I am in the wrong, I want you to tell me your triumphs and problems and let me be there for you, I want to be able to lean on you and for you to be able to lean on me but I do not want anyone to feel sorry for me.  So there, rant over!

The Cancer Diaries – A Bipolar Blip

Over the last few weeks I have been talking a lot about my ALL diagnoses and let me tell you something I have been thinking and dealing a lot with said diagnose as well. However as well as ALL I have also another diagnoses, one that I have hidden for years as I have been somewhat ashamed of it.  You see as well as having ALL I am also bipolar.  So what exactly does that mean?   Well luckily at the moment it does not mean an awful lot for finally after a number of years, tears and therapists I have managed to gain almost full control of this illness.   There is a part of me that is terrified that this status quo does not remain the same, but I am crossing everything that I can (and let me tell you that is not a comfortable nor a pretty look on me) and praying that I don’t have to find the strength to fight this battle on two fronts.

Why have I decided to come clean now and admit that I have a mental illness?  Well I guess it is partly due to the fact that when you are faced with such a life changing situation as this the things that you thought were important change.  But there is also the fact that I know so many other people that are struggling with mental health issues and are unable to get the support that I do, just because I have cancer, which is an illness that has thank god lost its taboo status.

So what does it mean to be bipolar?  Well according to the Royal Collage of Psychiatrists Bipolar disorder is;

“The illness that used to be called ‘manic depression’. As the older name suggests, someone with bipolar disorder will have severe mood swings. These usually last several weeks or months and are far beyond what most of us experience. They are:

Low or ‘depressive’ – feelings of intense depression and despair

High or ‘manic’ –  feelings of extreme happiness and elation

Mixed – for example, depressed mood with the restlessness and overactivity of a manic episode”.

While this may be a good clinical description it does not show in any way the total destructive nature that this illness can have on not just the sufferer but also their friends and family.   I always think that the downs, the depression, is the worst part of the illness for me but I know that the ups can be devastating for those who are unlucky enough to find themselves in my path.  I have done many a thing I am not proud of when I have been “high” but looking back in hindsight these actions have shaped me into the person I have become today  and in all honesty I don’t think that is such a bad thing.  Sure if I had the chance to go back and changes some of the  things I have done, especially those things that hurt people close to me, I  would think about taking it but these mistakes are also what shaped the person I am today and all in all I don’t think that is a bad thing.

In many ways  I am lucky that I have had this illness for so long.  I have a good grasp on what can and can’t make my mood change and while I would have thought a cancer diagnoses would have sent me into a total downward spiral that does not seem the case.  Maybe, maybe (if I look at this in a positive light and uncross my eyes) I can stand strong and believe that since I managed to fight and “win?” against one serious illness then a little bout of leukaemia will be no stumbling block for me.

Diagnoses Day – And the day before everything changed.

Tuesday the 29th of September started just like any normal(ish) day.  I woke up and 6.30am to get Louise up for school but found that I had to do most of this from bed as I was just too exhausted to argue and cajole her while vertical.  Now on the plus side this probably seemed like a bonus as she hates me getting her up normally as it would appear that I am too cheery first thing in the morning.  How is that even possible?

My morning from that point on seems to have involved much sleep and various conversations with work, where I appeared to be taking on extra shifts, who knew just how daft an idea that was going to be!  Then around midday I got a phone call from the surgery telling me that my blood counts were a bit low and that the oral antibiotics would not work and thus I had to go into the haematology department for some intervenes antibiotics to be administered.   Now believe it or not I am not a complete idiot and that statement sent rather large alarm bells ringing.  Having been told, quite patiently, by the doctor that no I could not wait till Thursday when my parents would be back to take over Operation Louise I then went in to full panic mode that involved my entire family and nearest neighbours.  Having informed my family that I had to be in Inverness for 4pm and having a panic attack when Maggie came to check on me I was still ready, packed (only an overnight bag as denial is a wonderful thing) birds and animals fed and waiting for the ambulance, yes ambulance, that turned up.

So at 3.45pm I duly turned up at Raigmore hospital (the cut of time being 4pm) and was quickly set up in my own room with my own drip.  Now here I have to be honest, I am so glad that it happened this way, as that night I went on to spike a rather high temperature which was scary enough in hospital and I can’t imagine what would have happened if it had just been Louise and myself at home.

The funny thing about that night is that the doctors were trying to tell me what was going on without using the C word and I was trying to get my head around what was going on without using the C word but we all knew why I was there.  The next morning a very brave doctor came in and told me that they were pretty sure that I had Acute Lymphoblastic Leukaemia (ALL) but they were just waiting for the blood results.  Now the person that I though I knew myself to be should at that time done something, burst into tears, had a full blown panic attack, gone into complete denial, but the real me turns out to be a little bit different, a little bit stronger than that.  I took the news, what else could I do, and just got on with my day as best I could.

The next morning the same brave doctor came in and confirmed his suspicions and gave me a book on ALL to read.  He also talked to me about the 2 different hospitals that they could send me to, Aberdeen or here at the Beatson, however as I have connections with Glasgow he was going to fight for a bed down here and all I can say is I am so grateful to him that he succeeded.   After he left I allowed myself one small wobble where I phoned my family to let them know (however unsurprisingly my sweet little sister already knew my diagnoses) and I also called Alison, the girl that does the morning part of my shift, and just said to her “Hi, it’s Jade here.  I have leukaemia” and before I knew it she was with me and stayed for the rest of the day.  I think that is the moment that I truly realised how not alone I was going to be in this fight.  Alison spent the day with me, talking, laughing, praying, phoning my family and we even went out for a walk for a bit.  She was my rock and I could not have asked for a better friend.

That night it was confirmed that there was a bed down here for me and the next morning I was transferred to Glasgow, which would have happened by air ambulance except for the fog in Glasgow (bugger I have never been on a helicopter before), but instead I was taken down by one of the nicest ambulance crews I could have asked for.  So here I am now, living on the penthouse floor of the Beatson and do you know something I am ok with that.  The staff here are amazing, the patients are so upbeat and while my situation is some way from perfect I know that there are way worse things that could have happened to me or those that I love.   I have to take this time to say how grateful that I am to be here now, I am in the best place that I can be with such a first class medical team and I know that with all of your support I can beat ALL and get on with my life whatever it holds for me.

Diagnoses Day – Minus 1 year (give or take a day)

Having recently been diagnosed with ALL I started to write on my Facebook page trying to keep friends and family up to date with what was happening.  However I have since decided that while I will continue to write on Facebook, maybe once a week, I don’t want to start to be that annoying person that people avoid online as I am all poor me and driving them up the wall.  So that is why I am here writing this blog.  Writing here means that I can vent my feeling as often as I want or need to and at the same time I am not forcing anyone to have to deal with my crap which can only be a good thing for all involved.

So as of two weeks ago on Thursday my new home away from home has become the Beatson West of Scotland Cancer Centre, which while I can say in all honesty I wish was not the case, could actually be a lot worse.  I was taken down here from Raigmore Hospital, where I had spent two nights, and will be down here in Glasgow for the foreseeable future.

So how did this all come about?  I guess it started about a year ago around the autumn of 2014 when my back started to play up.  It started as a twinge that moved to my kidney.  After putting up with it for a while I decided that I should probably go and see the doctor.  Now on the whole, given my weight (a little on the well the excessive side), I have been extremely healthy.  Sure I have suffered from poor mental health since my early 20’s but I finally have that under control and thus pretty much avoid the doctor’s as much as possible.  However my back was beginning to make everyday tasks difficult and so I thought I would just face the embarrassment of being told it was my weight causing the problem and made an appointment.  After a quick urine test, which showed nothing was wrong, I was sent away however this it turns out was just the start of a year of various visits to the doctors with right side problems none of which was ever explained.

In December of that year I was signed off work with right side back pain, then I was back again before the end of the month for painkillers and the doctor I saw then said if it was still sore in January then further tests should be done.  January arrived with sickness and swollen glands, followed by general tiredness and an uncomfortable/painful feeling on my right side.  The right side became more and more painful and even my right leg got in on the act.  In May as part of routine tests for my bipolar medication my results showed that I was slightly anaemic and  eventually I had a gallbladder scan about 6 weeks which showed no stones but slight swelling elsewhere.  I have been tired and sick and sore for a very long time but was still working 4 jobs and doing ok.

Then on the 27th of this month I was at work when my right hand started to hurt.  As the night wore on it became  worse and worse to the point that I could hardly put my gloves on and as for bending it that was a no no.  On Monday I went to the doctors, again, and was put on oral antibiotics and after the locum doctor read over my notes she gave me another blood test and that shall we say is that… the start of this wonderful journey I now find myself upon.