Dead Calm

Me? 
Well I finally had all the tests that I should have had and was diagnosed within 4 weeks. It turns out that I have moderate bile salt malabsorbtion which means that I have a problem reabsorbing bile salts after they have done the fantastic job of helping to digest my food. It's a common problem after pelvic radiotherapy and can be detected by having a SehCAT scan. It's caused by damage in the small intestine by the radiotherapy. It also has an impact on how much fat I can tolerate. 


My symptoms were erratic diarrhoea, stomach pains, urgency (one doctor had me doing arse aerobics for that insisting that this would cure all my problems!), chronic fatigue, breathlessness (this was an odd one. When asked if I had breathlessness, I said no thinking that they meant like asthma. It was only a few days later when I caught myself leaning against a cupboard gasping for air after walking up the stairs that I realised that this is what they meant and that I'd been having it for quite some time).


I am now on a drug called Colesevelam which is  a bile sequestrant and have started a 35g fat diet. Both have dramatically changed my life. After taking the tablets for a just a few weeks I realised that I had spent 4 years feeling like someone was walking over my grave and that feeling had been silenced. My bowel was more predictable, I was able to gain some modicum of control back and, most startlingly, a cloud of fatigue that I had been living with began to lift to a bearable amount. I had no idea how I had been functioning with such a level of fatigue. I actually marvel at how my body coped at all and I frequently get attacks of horror at the idea that I could have spent the rest of my life that way, never really connecting with the world, always feeling like I was looking through slightly opaque glass. It was a wonderful gift and all of this has had a knock on effect on my emotional state and my outlook on life.


The 35g fat diet is not so bad either. It's just a change of lifestyle. Let's face it, cancer is a change in lifestyle, having PRD is a change in lifestyle so this one isn't so difficult. I am only allowed 35g of any fat a day that is split into 5g portions (e.g. 5g fat = 1 exchange and I am allowed 7 exchanges a day). My body can't discern between 'good' and 'bad' fat, it's all the same so that's 35g of all fat. So it works that I have about 1 exchange for breakfast, perhaps 2 for lunch and then 4 for dinner. Of course, you do go just over that as some foods will have 0.2g of fat etc, but you're not eating those in a quantity that makes up to 5g in one sitting so it doesn't count. I can also eat plenty of sugar and carbohydrates (you should have seen me in the first week rollercoastering and pinballing my way through sugar highs and lows!). But you know, it's not that difficult and I think it has made an impact in how I feel so I've very positive about it. The only thing that makes it difficult is other people. As soon as I tell them, they want to feed me with fat, it's a bit like when a smoker packs in the cigs and the other smokers say "go on, just have one". Well, it's worse with fat, believe me. Plus, I can honestly say now that I can smell when someone is eating chocolate from the other side of the room!!
Eating out is a challenge that I haven't yet mastered but I'm getting there. 


I can honestly say though, that I can't complain about the diet or the new meds. Whilst they haven't completely taken away my symptoms, they have made enough of an impact for me to feel like life can be good again. That's pretty enormous, right?


I do, however, have damage lurking throughout the rest of my bowel and it's this damage and my other symptoms that I'm having the Hyperbaric treatment for. It's currently impossible to actually perform a colonoscopy on me because of the damage (I should know, I have suffered through 2 excruciating attempts - and yes I was sedated, it just simply meant that my punches will have looked rather comical and, thankfully, didn't connect with my torturers!). Further down the line in my life, this damage is likely to get steadily worse and cause more problems. Hyperbaric treatment, at worst, will halt the damage where it is and this is what I will pretty much be left with. At best, it may repair some of the damage and may even improve the bile salt malabsorbtion. So it's win win really.


At this stage I am ready to jump through hoops of fire and try anything to improve my situation or stave off further problems. I am just extremely grateful to finally be given a shot to do that.


8 weeks out of my life to heal my bowel is nothing. I don't care how uncomfortable it is or what puny side effects there are with this treatment. I'm eating it without salt and with a spoon! Hell yeah!!


I also have absolutely no desire to sue anyone for the consequences of radiotherapy. It saved my life and the price was high. But I intend to be left with the very best I can be and I believe that there should be a consistent level of good care to help patients after cancer and at the moment there just isn't. No, don't worry, I'm not going to rant again (I'll save that for the next one!!)


So what does HBOT do for radiation damage?
Radiotherapy impairs cellular proliferation, causing a progressive, obliterative endarteritis, which results in hypocellular, hypovascular and hypoxic tissue. This is seen clinically as oedema, ulceration, bony necrosis and poor wound healing that can persist for years after the initial 'insult'. High radiation doses may result in spontaneous radionecrosis.


HBO increases vascular density and oxygenation in radiation-damaged tissue. It improves tissue oxygen gradients and angiogenisis and enhances leukocyte bactericidal activity. Oxygen tension is increased to normal levels, enabling fibroblast proliferation, collagen formation and angiogenesis at the wound edges, further improving oxygenation and re-epithelialisation.
Now, that all sounds pretty complicated and impressive to us lay folk now doesn't it? Upshot is, it facilitates healing. Essentially, your body actually gets a chance to heal itself. Tissue that has been affected by radiation is just not as good at healing as tissue that has not been affected by radiation. This treatment helps the oxygen penetrate deeper into the tissue and helps the body to do what it would like to be able to do. Pretty cool huh?


Now, I'm going to leave you with a monster of a classic.... well it would just be mean if I didn't share this one with you...