I was asked my opinion on pain on another blog post, in one of the comments - and I thought that the reply warranted its own post. So, here we are.
Pain, sucks.
It's really that simple, and in my own opinion, I'd say it's the worst thing about this disease when it's all looked at as a whole. For myself, the pain is what's stopping me from; going out and doing things, cleaning my house, enjoying things when I am out, working, baking, gardening, performing, etc. If I didn't have the pain then I'd be able to do all of these things and more.
The treatment for thyroid cancer is RAI, after operations, and that I can handle. The thoughts and doubts in my head about my future, and if there even is a future I can handle. The looks people throw my way as they awkwardly try to think of what to say, or the well meaning comments that just miss the mark and actually make things worse - I can handle. In a way, I've always been emotionally strong and able to handle most anything thrown my way. Though whether that really was strength I'm not sure, as it might have been avoidance or denial, or who knows what else. I'd have a mini meltdown and react to whatever it was, and then I'd move on and it was forgotten. There was a blip in my early 20's when I had a year off work with depression brought on by a couple of sexual assaults, as well as a lot of emotional abuse from my family. I know that depression is still urking there, as I never really dealt with it and the causes of it - I just decided to move on from it. So I boxed everything up, and filed it away as I always did and still do. Though recently, I don't think there's enough space for new boxes, and the old ones seem to be crumbling. But that's for another time.
Physical pain is a tough one though. You take the cause of a pain and give it to one person and they will feel it like x. You take the exact same cause of a pain, and give it to another person...... and they will feel it as y. And so on and so forth. People don't experience pain in the same way as another and everyone has different pain tolerances and thresholds. I don't know if you watch 'One Born Every Minute' or not, but there's a prime example. Every woman there is having a baby, and every woman experiences that pain differently to one another. I've seen a couple that haven't winced or made a sound, while others are screaming and crying and insisting they need to give up. Now, I know there are a few other variables in there as well - but not enough to explain each extreme.
This means that medicating pain must be exceptionally difficult. Because medications don't have such variations so as to deal with each patient individually. There are of course, many hundreds of types of pain killer out there, each with different doses that can be given. However, they all have a maximum dose that can be given, and they all work on people in different ways. Morphine, as an example, doesn't work on my Mum at all. She gets no benefits from it, and she could still feel her pain in it's entirety when she had her hip replacements. While for me, when I take my MST I can still feel that the pain is there, I register there is pain, but..... I just don't care. The problem is, I then don't care about anything else either. I space out, zone out, and become a zombie - a nauseated zombie at that. Sickness, dizziness, depth perception issues, ditziness, and no attention to detail are all words you can use to describe me on MST - so I try not to take it if I don't have to. When I had the morphine drip in the hospital after having my chest cracked - it made me dry heave I was so nauseated and dizzy. NOT the best thing when you've just had open heart surgery, let me tell you! Oromorph works quite well for me. It just takes the pain away long enough to make everything else relax instead of tensing around the painful area. So that kick starts the 'sitting doing nothing to alleviate pain' routine that is my day to day.
This isn't the best case scenario as I want to be able to be pain free, so that I can get out and do things. Not fear to leave my seat as I know that more than 15 mins out of it and I'll be dealing with all sorts of issues for hours to come. That's not living, that's existing. So I asked for help, and for a review of my meds to see if there was anything else I could try that wouldn't space me out like the MST did. I was given an appointment to a hospice to see the pain specialist there. Now, this wasn't easy to get to, and was an expensive taxi ride to and from - but I made the effort as there was hope of getting on with things again. Ha! This guy was one of the most rude doctors I've ever come across!!!! He totally misread my file and told me I didn't have cancer. That my problem was that I was fat and inactive, and just needed to lose weight and exercise more. Yup, I burst into tears at that point, and through the sobbing told him just how wrong he was, starting with what my file actually said, leading into what I ate on a daily basis, and ending with the fact that I wanted to do more and already pushed myself as hard as I could, and couldn't do more as this was why I was there to see him. So thanks for wasting my time and money and dashing my hopes. So no help at all really, and I'm just stuck as I am.
However, I have found some things that have helped me, and others that have helped other people in my chats with folks.
First off, for me, swimming is THE BEST thing in the world. It takes all of the pressure off everything, and the water just surrounds you and holds you like the fluffiest cloud ever. I discovered this in a sea pool that had a VERY high salt concentration. I'm guessing that the water came in and topped it up every high tide, but between them the sun evaporated the water within it. So you end up with a much higher salt concentration than you would in the sea itself. As such, I didn't have to do a THING to float. My boobs seemed to act as buoyancy aids, which was perfect as my legs and torso sunk under the water, and boobs kept everything above them free of the water. If it were possible, I'd have moved into that pool and never left it. It was the first time in years that I had actually been properly pain free! Problem is, now I'm home the local pool is too far away from me, and it's such an effort to get there, get changed, swim, get showered, get dried, get changed, get home. With the sea pool I found in Jersey....I got up and into the costume, crossed the road and got in the pool and floated for a couple of hours. Went back to the room and could shower and then sit around in a towel for another hour, before then getting dressed to head elsewhere. It just started the day off wonderfully. (And I was earlier in my treatment than I am now.)
Massage worked really well too..... when I was allowed it. You don't realise how many bits of you are affected by the pain, at least I didn't, not until I got a massage to get all the knots out. Seemed that when I'd felt the pain in my bones, I was holding myself in an odd way to try and compensate and alleviate the pain. This then had a knock on effect on my muscles, and twisted them up into knots, as well as holding myself tense the whole time. The massage not only relaxed the knots, but also my mind. Just lying there, feeling some of the pain vanishing, disappearing into the background music and incense - it was lovely.
Which leads on to meditation. Just sitting there and clearing your mind, allowing everything to wash away and relax helps not only with the emotional turmoil that's going on in your head, but also the physical. It makes you stronger mentally, so that the pain feels lessened as you're in a better state to deal with it. Which links back to what I first said about different people experiencing pain differently. So taking a 'whole body' approach can often have unexpected benefits.
I've not tried it myself, but there are then people out there who swear by other alternative treatments such as raiki and acupuncture, and probably more that I can't think of right now. But if you're in pain, and the pain killers just aren't doing what you want them to - then where's the harm? MacMillan Centres have all sorts of alternative therapies I've seen - and tried - so I would definitely ask you one question. What have you got to lose by giving it a shot? Even if you think it's all hogwash and claptrap, you might as well give it a shot - just in case. (But check with your oncologist first - don't want someone with crumbling bones getting a firm massage!! Which is why I'm not allowed one anymore - just in case. :'( )
Distraction is a good 'cure' too. Try and do something that needs your concentration, sothat it's all focused on that rather than the pain. The more you think about the pain, the more you're going to notice it. Now, believe me, I know that's easier said than done! However, if you can find that thing that brings you fun, enjoyment, joy, and uses up most of your grey matter - you'll find that the pain diminishes. Even if it's just a little, it's something.
Finally, and probably least recommended by anyone professional - lol - ALCOHOL! For me, it takes away the pain like my pain killers do, but I feel like I'm more 'in the moment' than I am when I'm on the strong pills. It's not the best crutch to lean on, but it's what I've got for now, and is working for me. So...... meh. lol
I guess the only other thing to say is that as a friend or family member, watching someone in pain and being unable to help or do anything to help is probably one of the most difficult things you will ever have to do. We know you can't take our pain away, don't worry, we don't expect you to. But just by being there with a laugh and a smile, and offering to help with something specific - don't just say 'what can I do?', say 'can I do x for you?'. We won't answer the first with a positive, as we don't want to impose by taking up an offer that might not have been genuine, or by asking for something to be done that's too hard/time consuming/etc. But if you offer to do something specific that you can see or know needs done - that's an entirely different question, and will often be met with a positive as it seems more genuine and caring.
But, what a number of people don't realise is that even the support network of the person with cancer, need a support network of their own. After all, this person you love/care for/like is going through something pretty horrible, and you can't fix it with a magic wand. You often can't even make parts of it a little better, you've just got to sit there and watch it happen. And that's got to be hard! So if you are the carer of someone with cancer, a family member of someone with cancer, or the friend of a cancer sufferer - ha! Switched it up on you! - then make sure you have a group of friends around you who can help you cope and deal with your own thoughts and feelings that you can't express to the 'patient'. The best person for this, is someone who is emotionally invested with you, but has no ties with the person with cancer. That way, they have no emotional conflicts in trying to deal with their own feelings for the cancer patient, as well as your own. So this person could be someone you spill all to, at one end of the spectrum, while on the other end - they could just be someone you go for coffee or lunch with and don't talk about cancer at all to give your life some sort of semblance of normality. Or someone in between somewhere. Just make sure that you are taking care of yourself, while being there for the person with cancer. You can't take it all on your shoulders, and you need just as much help and support as the patient - just in different ways and for different reasons.
So in the end, I guess, we've all just got to find our own way. Try out everything to see what works, and then run with it. So long as it's not going to do you more harm, and it's actually doing you some physical or emotional good - then FABULOUS! There's no right or wrong way to cope and get through it, because we're all individuals and we all like different things, and deal with things differently to one another. And that's what makes us all awesome!
- Hope something here helps. Lass xxx
