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.


  1. lisa you are fantasticly strong, i love how serious it all was at the beginning then you got in to your jokes and laughs towards the end... i was thinking good aswell.. i wouldnt want to go to my new job in floods of tears lol. love you so much, i will have to come round soon n show you my new car.. n i will try make you point with your floppy 'penis' arm :) xxxxxxxxx

  2. Lisa you must be so proud of yourself for having the heart and strength to share this with us. I live with Fibromyalgia as a result of multiple breaks in my spine.....and although I am in constant pain, I still have my health. It takes the heart of suffers and survivors like you, to help people like me , when we hit that brick wall and feel we cant go on. Thanks to you I can put my pain into perspective and just be grateful that pain is really my only problem. Thank you x

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