Abdominoperineal Resection surgery - one year on

I was in a hospital the other day visiting a friend who has just undergone a Triple Heart Bypass, and that reminded me how close his surgery date was to the anniversary of mine a year ago today.  I was sad that he had had to undergo the knife, but from a purely selfish point of view how nice it was that the patient was not me! What a refreshing change that was. In fact I have not had a hospital appointment at all yet this year....

Visiting Dave in the hospital.

I would like to chronicle how I am getting on as if anything, it serves as a reminder to me - when I feel fed up by slow progress I can look back and see what has changed and how far I've come. However I never thought I would have to do this as, although at the time I didn't even look forward a whole year, I had imagined that I would be hunky dory and back in rude health (surgery wise at least) after about three months, maybe six at the very most! Perhaps it is a good thing really to be naive and not know as you don't then worry about it, which is especially important when you are dealing with chemotherapy at the same time.

The major problem I've been left with is nerve damage from my perineal wound which is affecting my buttocks and hence the need to still have donut cushions to sit on. There has been a definite improvement after starting to take the drug Lyrica, but although my dose was recently upped from 150mg a day to 225mg, there has been no marked difference by taking a higher dose, although as with everything, it is getting a little easier as time goes by. I can sit on one or the other of the cushions now (one is foam, the other a kid's plastic swimming ring). The foam cushion is less comfortable and I still feel an 'oof' moment in my bum when I get up from either cushion or even both, which is usually how I sit. However I can sit without donuts on my kitchen or dining room chairs as they are both that rustic style with the straw type seating which has a slope down towards the middle, so when I sit on them there is no pressure right where obviously the pressure points are. But if I put the kitchen chair cushion down I can't sit on it at all! Experimenting with different chairs shows me that the most uncomfortable seat for me is actually my beloved sofa, which is a shame.

Foam donuts have other uses...

 

...they make perfect cat beds.

I no longer have the feeling that my body is rearranging itself when I get up now. I can bend over no problem but squatting or kneeling down is less easy and I have to do either slowly; even slower when I get up! But some of that may be to do with lack of muscle, and some is to do with the neuropathy in my legs (more about that later as that's a chemo induced problem). I can finally sit normally on the toilet seat to have a pee, because that position spreads your buttocks open and was too uncomfortable before! I was sort of sitting with all my weight just on one thigh and one hand on the toilet seat to balance myself (not recommended in public loos).

I found a video on YouTube of my exact operation and finally felt able to watch it all the way through (it was condensed down to 20 mins). I'd recently watched videos of having chemo ports both inserted and removed as well. It's always better to watch these things after the event! But with the main surgery, seeing how much flesh is removed around the anus just confirmed what I had thought - I had lost a lot of depth of skin between my buttocks and of course that has had to stretch over time to get comfortable again.

I'm really happy that the nerve damage to my bladder got better over time so that is one big hurdle sorted! However down near that department I have perineal skin in the area that previously was between vagina and anus that was fried by the radiotherapy and which is still tender sometimes; around this area was also where the end of the tunnel that the non-abscess formed which healed badly, leaving a couple of odd looking scars on the skin, which are tender to the touch. That may also be part of what causes discomfort upon sitting. In case I didn't mention, my perineal scar runs from nearly the top of my buttocks to about one inch behind the vagina! So it's kind of understandable that it would be a hard one to heal and would be jolly uncomfortable along the way.

The third thing causing butt/perineal pain and discomfort is a bacterial skin infection between my buttocks which started around October/November. I spoke to my surgeon about it when I saw him back in December, and he took a photo of it with his phone (!!) to take down the corridor to show to my proctologist. A swab was done and it turned out to be a bacteria called Streptococcus dysgalactiae ssp equisimilis (haha that's more of a mouthful than the latin names of most insects!). I took a two week course of antibiotics which made no difference, which confounded the surgeon. He consulted a dermatologist who said that this bacteria is present in the anal/perineal/vaginal area naturally but occasionally for some people can flare up into an infection (which is normally treated by the broad spectrum antibiotic that I took). They agreed the best course of action was to do nothing (unless it got worse), rather than give me more antibiotics. It seems to be getting better - slowly, with time, just like everything else. But it's still painful and a bit oozy at the top of my butt crack. 

Harry on my typing chair. A half deflated rubber ring is more comfortable for me.

My belly scar is fine and the bag, well, it has its moments and sure, it is a bit of a hassle at times, but overall it's one of the easiest things I've had to deal with post surgery (or compared to chemo and its after effects)! It's smelly changing it but thankfully at home we have good extractor fans in the bathrooms - it is going to be interesting in the tiny motorhome bathroom! I guess the skylight will come in very handy. 

Poo bag.

Other people with stomas do this so I thought I'd be brave and give it a go... but using the selfie thing on my phone is really hard and when I point it at my face I see a haggard witch looking back at me. Not nice. I'll leave the facial selfies for the teenagers!

I'm really pleased with my nice clean belly scar.

So, onto the after effects of chemo. I don't get any blood tests done relating to that apart from cancer markers, which is unfair as personally I want to know when my blood is back to normal so I can feel that the horrible chemo drugs have finally left my system. But hoorah! I have a blood test for my thyroid condition - it used to be once a month but is now every two months and the next one is due in about three weeks. It shows full bloodwork for red and white blood cells and platelets, plus a few other thing like liver function tests. The last one was the healthiest I have seen in a long time with only ONE thing in bold (bold meaning it's not in the normal healthy zone) - Lymphocytes which are a type of white blood cell are still low. I'm really hoping this next one will show no bold. Amazingly, despite still having a slightly suppressed immune system, I didn't catch Keith's recent cold - that has to be a first!

I see my Oncologist mid April and need to organise an ultrasound before that. I can't believe how the time has gone by since I saw him last in October when I got the all clear.

I still have the neuropathy but I had about five days recently where it got markedly better - I suddenly found that I could feel my toes! I could get my feet into my slippers without needing my hands to get them on at the back. My knees stopped being painful coming down the stairs. I had more feeling in my hands and whilst still having tingling in my fingertips I could feel through it. But no sooner had I told Keith, then announced it to everyone on facebook, than it got worse again! Next time I'm saying nothing! However I feel that it is nowhere near as bad as it was. The numb patches on my feet have gone and although they still feel like stiff blocks (especially my ankles) I do have more feeling overall. It changes a bit too which may be a good sign with some days being better than others; this is a recent thing as months back all it did was gradually get worse then stay the same. The most important thing is that I am not aware of it every bloody second of the day like I was before. So partly I have got used to it, and partly it is (I really hope) getting better, but like everything else, very, very, slowly.

However possibly as a result of Lyrica for which it is a noted side effect, possibly due to the fact that I ate an inordinate amount of sweet things over the Christmas/New Year period and got very little exercise, I have got fat! Yes I know, fat is a relative thing and I jest, but I no longer fit any of my jeans or trousers and have put on a whopping 2 stone/28 pounds/13kg since I was at my skinniest. However that skinny look was ugly, vile, disgusting, quite frankly downright hideous, so the fact that I can now pinch about 3 inches in certain places is not so bad (I keep telling myself). I've cut out the sweet things now and my weight seems to have stabilised, but I did have to buy some new jeans. I've just got to force myself to do more exercise which I always find hard to do, because muscle tone and strength is more important now than weight.

Overall, between the surgery and the neuropathy which makes my knee and ankle joints stiff, I feel like I've aged 20 years in mobility at times. I know what it feels like now to have to use furniture to heave yourself up off chairs or the floor; to no longer be able to walk quickly; to generally be slow in most movements, particularly after sitting or lying for a while and being really stiff when first getting up. It's not always as bad as I've described though and the more active I am, the easier it gets.

 

I think my face is fatter,
anyway I hate this pic of me (as usual)!
Dave looks amazing 5 days after major surgery.

That leaves the last thing - the depression. It is lifting but not entirely gone - I see and hear things which make me happy but it's like it's at a lower level of happiness than before. It's too hard to explain. I now have huge sympathy for anyone suffering from this debilitating condition which previously I took little notice of. 

So, that was my crap year and now my new year begins! I am trying to get back my zest for life and Project Motorhome is helping hugely as I have much to look forward to. I haven't been taking many photos lately but want to get back into that soon. With spring having arrived early there are flowers, birds singing and much going on in what still looks like a wintery landscape. I will be back to normal blogging soon I hope. But we pick up the van on Friday so I may be a bit side tracked for a while.... :-)