Wednesday, 16 February 2011

One arm bandit...

One arm bandit, cool hand Luke or even quick draw magraw! Any of those nicknames would have done, but no! My arm has been nicknamed 'floppy penis arm'. To be honest, since the nerve block to my arm it does just hang there and i still can't move or feel it from my shoulder to my wrist. Aside from the pain free bliss I've been in for a week and a half, it has given me and my friends some hysterical moments of laughter and also a frustrating moment of embarrassment ( i was alone for that). But fortunately i am right handed and it truly is amazing how quickly we adapt to a situation and work with what we've got.

The pets seem to detect when i'm
out of sorts or in pain. This was taken
the night before the arm block. They wouldn't
leave my side for days.
Let's start with a normal morning. Say the shower. Now don't forget since i had the total node dissection to my groin (my left leg i might add), i still have to lift my leg to get it over the edge of the bath or in the car and so on. So imagine that act with one good arm lifting the leg and the other just hanging there (also my left arm) but don't worry, i did it broken bones and Mum was close by just in case. Now, wash your hair. Normally i would pour shampoo from the bottle with one hand into the other hand then place it on my head. Simple! But with flopsy i can't even turn my hand to catch the shampoo i'm pouring into it, so i had to pour the shampoo directly from the bottle onto my head. Obviously my quantity judgement was out because by the time i put the bottle back on the shelf the shampoo was pouring down my face like I'd been slimed and when i lathered it up i looked like I'd been in a foam party! I swear it took me twenty minutes to get the shampoo out and my hair was squeaky clean. Now I've got it sussed. i hold the bottle between my knees, squeeze tight and squirt the shampoo into my good hand that way. Genius!! I like to call it Kiwi ingenuity. Where there's a will there's a way.

Then there's simple things like putting deodarant on. You can't just lift your arm and spray. I have to pick my left arm up with my right, rest it on the dressing table, bend my knees to open the armpit area and spray. Think about it. Give it a try even. You'll be surprised how the smallest things become the most difficult.

One evening i even thougth i'd be extra clever and paint my nails. I am a Beauty Therapist afterall. How hard could it be? I'm right handed, flopsy only has to do five nails! Well i started off great guns, as you'd expect and then it came to flopsies turn to paint the right hand. Firstly i had to dunk the brush into the bottle with my right hand and place it between the fingers of my far so good. I then figured because i couldn't move my left hand or grip the brush firmly to do the brush strokes i would pull my nail of the right hand along the brush instead. Easy-peasy! It only took five minutes to paint my right hand...but let me let you into a little secret. It also then took an hour to get the nail polish off my skin! But the satisfaction i get from not letting something like that beat me is well worth the time and effort.

Now lets move to the kitchen. Because the arm tends to ache at the shoulder because it's a dead weight, if i don't have a pocket i pick it up and place it on the bench. So this particular day, Mum was folding my washing for me and i was making us a cup of tea. You can do that with one hand! I was in the process of filling the water filter jug to pour into the kettle. I rested my dead arm on the handle of the jug as a weight so i could pull the lid off and because i have no feeling in my hand i forgot i had my hand in the handle of the jug. As I swung round to talk to mum, the jug was still in my hand but instead of just stopping i ended up in a process like a dog chasing its tail with my good hand trying to catch my dead hand and the jug. I was spinning round in circles saying to Mum 'help me catch it' but as i caught a glimpse of her she was standing there, legs crossed about to wet herself, laughing hysterically. Consequently, i now put the dead arm in a sling so i know exactly where it is.

Now for the embarrassing one. I don't know why I'm so honest with you all sometimes but with cancer you have your good days and your bad. Your funny times and your sad and i figure if you're going to read all about my journey you may as well know it all.

So this particular day it was decided that my G.P was going to ring me and we were going to discuss all the medication i was on. With being in so much pain before the arm block and having on call Doctors add new painkillers to the mix my Oncology team wanted to make sure i was taking the medication i needed to be taking. Also because my angel Dr Ramos (the arm block guy) wasn't sure how long it was going to last initially, the maximum doses were all left as they were. But as it was 4 days in and all was looking good, we decided to reduce some of the higher dose medications. As it turned out i was feeling really tired that day and decided to have a little afternoon kip. I didn't want to go upstairs because it would've been sods law that Dr Graham (my lovely G.P) would ring, so i decided to lay on the couch. Being blond and highly intelligent i had my head down by the phone so i could grab it with my good arm if he rang...not thinking my dead arm and dodgy leg were on the edge of the couch. It turned out i went into such a deep sleep and was there for over an hour. The phone didn't ring but when i woke up i was bursting to go to the toilet. Forgetting i had a dead arm, i leaned over to get up off the couch, my arm collapsed like spaghetti and i fell onto the floor. Well with my dodgy leg, if I'm on the floor it takes some mighty manoeuvring to get up anyway and that's with two fully functioning arms. So there i am on the floor, I've got a blanket tangled round me and like a walrus I'm trying to stand up! Don't worry, I do get up and unharmed and run to the loo with flopsy swinging by my side. Now is the embarrassing bit. Try pulling your top up out the way of your trousers and your trousers and knickers down with one hand at warp speed. Don't forget you can't just pull your trousers down on one side. You have to go all the way around your waist with that one hand. Try it next time you go to the toilet. Put one hand on your head and actually try it one day. Believe my it is a mission, let alone when your bursting. So needless to say i wet myself! I was mortified but more so relieved that Joe wasn't home to have seen his mum wet herself. Once i changed i sat there on the edge of my bed and had one of those feel sorry for myself moments. I thought, i can't have surgery...arm blocks are fantastic for pain but that leaves me with a completely useless arm...and I'm pinning all my hopes on a trial drug that may not work. So for all you lovely people out there that leave me such wonderful messages of how brave i am and how i inspire you all, please know i have bad days too. We all do. But you know what i did. I thought about how bloody funny i must have looked rolling round the floor like a walrus. I remembered how much pain i was in before the arm block and how quickly i have adapted to the use of one arm. I went out and bought some tena lady (at 41 years old) to prevent any further accidents and i reminded myself that i am still alive and i am positive that trial is going to work and shrink these tumors.

Sunday, 6 February 2011

Coping with the pain...

Let's start with stubbing your toe. Those very first initial seconds when you're hopping round the room like a maniac, tears in your eyes and cursing the piece of furniture that was in your way. Multiply that pain by fifty, transfer it to your arm and hold that thought.

Now, whack your funny bone so hard that the shooting pain down your arm makes you feel sick to the stomach and does not ware off. Again, multiply that pain by fifty and hold that thought.

Finally, add a throbbing cold heavy ache to the mix. Centralise it to your armpit, again multiply by fifty and hold that thought.

Abracadabra...put it all together and what have you got? The bag of spuds growing under my arm!

It never ceases to amaze me how fast these tumors grow. It was just after Christmas when i noticed a lump under my left armpit. I had a bit of a chest infection and put the inflamed node down to that because once the chest cleared up so did the node. There was still discomfort under there, as if the seam of my sleeve was too tight, but it wasn't painful. However, an MRI scan i had done a fortnight ago had shown a mass of nodes, deep in the armpit, pushing on nerves which was causing all the pain from my armpit to my thumb. 

Deltoid muscle
My shoulder however, started aching when i had the Adrenal Gland bleed. I put that down to the subcutaneous morphine shots i was having for the pain relief, until i noticed a very flat lump right beneath the deltoid muscle. By beneath i mean literally sandwiched between the muscle and the bone.  After a week or two as the lump got bigger i started noticing a lack of movement with my left arm when it came to simple jobs like washing my hair or even just lifting my arm to put deodorant on.  It was so painful. Now, less than three months later, i can't lift my arm away from my body more than a foot and i can't even unscrew the lid off the milk.

Then there's the good old boob on the back to add to the mix. As I've said in earlier posts, that's also getting bigger and is now spreading it's way under my arm as well and putting pressure on my shoulder blade.

So that's where we add all the varieties of pain i described together. All at the same time, continuously through the day or night and regardless to whether i move my arm or not. My normal dose of pain medication, morphine, diclofenic etc...isn't even touching the pain because the majority of it is nerve pain. So I've been prescribed Gabapentin which is a neuropathic painkiller but this week i hit the total dose i can have and I'm still in agony so another nerve pain pill, Amitriptyline, has been added to the mix.  I'd love to say that's working but it's not so I've resorted to another method of pain relief because Morphine, I've discovered, is useless for nerve pain as well and only really subsides the dull throbbing ache.

#1 - food: especially peanuts. I've got a tub next to my chair and i sit and focus on chewing down every mouth full. Imagining every nutty morsel, every grit, crunching down to a paste. It sounds gross but it actually did  take my mind off the pain for a while.

getting rosie round the cheeks
during the blood transfusion
Fortunately i had my three monthly check-up two weeks ago and i had pre-warned Charlotte, my lovely specialist nurse, about my arm and the pain i was in so my surgeon, Dr Andy, was also there to have a look. One of the reasons i love my team is that we discuss treatments and outcomes so radiotherapy was thrown onto the table as a method of pain relief.  Going by the radiotherapy i had for the boob on the back we know it wouldn't shrink the tumors but the hope was that it would help with the pain. The only problem i have there is that whether its coincidence or not, every time i have radiotherapy or chemotherapy my body goes crazy and fights the treatment and not the cancer. I also weighed up the fact that even though radiotherapy is pain free at the time your body still compensates and gets rundown for weeks after the treatment. So i decided i wanted to go for the surgery option. Since having the total node dissection to the groin i was well aware this time that when Dr Andy said my scar would be 20cm he actually meant 30cm (unusual for a man to underestimate size i know). So we all decided surgery would be a good idea to alleviate some of the pain but i would lose some movement of my arm and it was going to be a big job (about 4 1/2 hours). To be honest the thought of ridding myself of some of the pain far outweighed losing mobility that i didn't have full use of anyway. There was just one problem. For some bizarre reason my haemoglobin level had dropped to 7.9 and i needed 3 units of blood. Dr Andy and Alice both wanted to wait for the results of a CT scan to see what that was all about, talk to a brachial nerve specialist for the best way to go about the surgery and we were off and running. So by the Thursday i was having a blood transfusion and Friday the CT scan. No rest for the wicked you know.
That brings us to this week! Excruciating pain in my arm that has had me in tears, a puffy face from steroids and more pain killing drugs and a weight gain of four kilos due to the bloody peanuts!!! Not a great week. But not to worry, my follow up at the MDM (multi disciplinary meeting) was Thursday. Ahhhhhh, Thursday. Dr Andy will give me a surgery date and all will be well in the world again...not!!!

As usual, my trusty side-kick, mum, and i waltz on in and the team come into the room. Dr Alice, Dr Andy, a couple of other Doctors and Charlotte my nurse. I hadn't really given the CT scan results much thought because i was in so much pain with my arm i was just fixated on a surgery date. So i was gobsmacked when they said i couldn't have the surgery. It turns out the boob on my back and the bag of spuds under my arm have all joined up with finger-like connections spreading into the surrounding nerves and tissue. So my 4 1/2 hour surgery just turned into a 6 hour surgery. I'm sitting there thinking that's okay, a little bit longer but I'm sure i can handle that when Dr Alice then says that the Adrenal Glands have also got larger and between her and Dr Andy they don't think my body can handle the surgery and whether it is in actual fact doing me any favours. Also to top that, and this one is a double-edged sword...i have a new tumor growing on the outside of my kidney attaching itself to the renal artery. This isn't just your average tumor, it's a Lisa special because apparently it's preventing my liver from throwing blood clots to my lungs! How about that then! In a weird way I'm taking the mickey out of myself here but honestly my body never ceases to amaze me. I joked with Dr Alice about this as well and she gave me that look. That "i can't believe you" look, but she smiles too and at the end of the day i just keep telling's not in my lungs, liver or kidneys! And it's not that i don't take it all seriously enough either because every day i look at Joe or Mum, i know it's not a joke but it's how i need to deal with it. I need to find the bright side. What can i say, I'm a cup half full person.

So back to the meeting. Because of the amount of pain i was in Dr Alice was going to refer me to the pain clinic because the 35 tablets a day i was taking were not even touching the pain. Thank goodness, that afternoon i got an appointment to go back the The Royal Berks for the next morning to the pain clinic and this is where my angel came in. Dr Ramos...ahhhhhhh. One mild sedative, a little local anaesthetic and a large needle with an electrical current passing threw it being shoved into my neck, followed with some more anaesthetic and my arm was as dead as a do-do! One nerve block completed. Oh my God the bliss. I couldn't feel or move my arm from my shoulder to my fingers. It was fan-tas-tic! The best way i know how to discribe it is...imagine yourself in a really busy shopping centre at Christmas. There's kids screaming everywhere. People pushing and shoving you around. The music is so loud it's hurting your ears and you just can't think straight. Now flick the switch and turn it all off. Magic! My God, the peace that i felt within my body to have that pain turned off. It is hysterical though not being able to move my arm at all. It just swings by my side with no control what so ever so i have put it in a sling to stop myself whacking it into things or accidentally shutting it in the car door but i feel like this huge weight has been lifted. The first night after i had the nerve block done i slept twelve hours straight! It's not sure how long the affect will last but even a few days will be heaven and as far as sorting these tumors out and ridding my body of them all, i still pray every night that the angels rid my body of all the cancer and disease so that i may live a long, healthy, happy life. I still have my weekly healing with Kimberly and the Crystal Bowls and fingers crossed in the 2nd quarter of this year the drug trial I've been holding out for will start and we'll shrink these babies that way. Every day is still a blessing.