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Cheshire Chris's Treatment Thread

User
Posted 04 Sep 2018 at 16:29
Safely back home again with a huge bag of medical supplies! I've got to give myself a daily injection of an anti-clotting drug into my stomach muscles for the next four weeks. I was a little worried about this, but it turns out to be very easy and completely painless.

I've been left with three small incisions and one long one (where they took the kidney out through) just above the waist on my left side. The small wounds are already completely closed, and I'm told that the sutures in them will dissolve in a few months. The long incision has been closed with staples which will be removed next Monday. That's the one that's causing the pain because it cut a lot of my abdominal muscles and means I can't lift anything heavier than about a kg for the next few weeks. Sitting down or lying down is fine, but there's an intense burning pain when I stand up or walk.

I go and see the surgeon again in 6 weeks to get the lab results on the kidney and have a scan to make sure everything's OK, but the surgeon was confident that this would be a complete "fix" for the kidney cancer.

So, I feel as though another huge hurdle along the road to being cancer-free has been successfully cleared. It wasn't the most pleasant of experiences but, as is so often the case, wasn't nearly as bad as I'd built it up to be in advance.

Cheers,

Chris
User
Posted 04 Sep 2018 at 16:37

Glad to hear you are home. I hope the recovery continues apace.


Ian

User
Posted 04 Sep 2018 at 16:47

Don’t forget to see a Physio Chris,  once incision has completely healed you will need to do special exercises to stretch the scar tissue  where the muscles have been cut otherwise you could end up with issues 

User
Posted 05 Sep 2018 at 09:53
I’m feeling slightly abandoned by the system! Nobody’s given me any advice on what I should or shouldn’t be doing to aid my recovery from the surgery. When I’m sitting or lying down I’m fine - the cut muscles are just a dull ache - but as soon as I stand up I feel it all stretching, and the longer I stay on my feet the more and more painful it gets. After standing or walking for maybe two or three minutes it’s as if someone’s twisting red-hot knives in my side and I just can’t remain standing any longer. As soon as I sit down again within a few seconds it’s ok again. I’m guessing that the period I’m able to stay on my feet for will gradually increase as the muscles start to heal, but no one’s told me anything!

I’ve booked a telephone consultation with my GP for later today and hopefully he’ll be able to advise me.

Chris
User
Posted 05 Sep 2018 at 10:41
It's maybe the staples pulling Chris and it will feel better once they are out on Monday?

Have you tried ringing the ward you were on to ask advice?
We can't control the winds - but we can adjust our sails
User
Posted 05 Sep 2018 at 12:11
My GP phoned me about half an hour ago, and he said essentially the same thing - that it's the staples pulling at the wound, and it should be a lot more comfortable once they're out. He's advised me to keep as mobile as the pain allows me to, because the more mobile I am, the quicker the muscles will heal.

Chris
User
Posted 08 Sep 2018 at 22:43
Well, this certainly hasn't been the day I was expecting it to be!

Since my operation last Saturday I've been unable to have a bowel movement. The hospital sent me home with laxatives and said that constipation was a normal side-effect of the morphine and codeine I've been on. Up until this morning, lots of urges to go, but the result was nothing but copious amounts of wind (which I was told was a good thing, because it shows my bowels were working OK.

This morning rolls around. Sudden desperate need to move my bowels, but everything locked up solid. Unbelievable pain - when I "strain" it pulls directly on the abdominal muscles that were cut during my kidney operation, and the pain of that had me on the verge of blacking out. No choice but to phone 999. They said I'd done absolutely the right thing and an ambulance showed up about 15 minutes later to cart me off to the local A&E, which was an absolute madhouse - people lying on trolleys in the corridors, etc.

After about 7h of being wheeled in and out of cubicles and explaining the same thing at least half a dozen times, about 7:30pm they sent me to the CDU ward who do more complicated stuff than A&E and they gave me an enema. Talk about a blessed relief! Flood gates opened and unbelievable amounts of poo duly emerged.

Just got home a very happy man. I really hope that things stay working as the should do now that the blockage has been relieved. I'm going to stay on the laxatives for a few days to make sure.

Chris
User
Posted 08 Sep 2018 at 23:28

I don't want to say the obvious but liquid is very important to keep things moving.


Hospital food in my experience was low fibre easy digest, white bread and the like which definitely doesn't help.


High fibre, bran, veg, fruit, muesli, wholemeal bread and plenty of liquid are the usual recommends.


White bread and cornflakes and the like are no good.  All the best.

User
Posted 08 Sep 2018 at 23:57
I completely agree, Peter, and I normally do eat a high-fibre diet and keep myself well-hydrated. Given that this is the first time something like this has ever happened to me (and hopefully the last!) I am strongly inclined to blame it on the opioid painkillers, which I’ve been having an awful lot of since my operation.

Chris
User
Posted 09 Sep 2018 at 07:47
After yesterday's horrible experience I've decided to stop taking the hospital-strength co-codamol (30mg codeine / 500mg paracetamol) with immediate effect and go back to ibuprofen and over-the-counter co-codamol (6mg codeine / 500mg paracetamol). A bit more pain is a price worth paying to avoid a repeat of yesterday. I'll go and see my GP tomorrow and see if he can prescribe some sort of non-opioid painkiller.

Chris
User
Posted 10 Sep 2018 at 17:00
I went to my GP's surgery this morning to get my surgical staples removed by the district nurse. It feels a lot more comfortable with them gone - the sharp pain in my side I felt when I stood up and the staples dug in has entirely disappeared now. Hopefully this'll make it more comfortable to start doing a little more exercise.

When I stood up from the table I'd been lying on after having the staples out I felt a strange "ping" sensation inside me. I'd guess that was one of the soluble sutures inside me breaking? No harm done, but an odd sensation.

Chris
User
Posted 11 Sep 2018 at 13:26
Removing the staples has made a huge difference to my mobility. This morning I walked to the Post Office and back, which is about three quarters of a mile in total. It took me half an hour rather than the 15 minutes it would normally have done, but there was no real pain. I couldn't have done that a couple of days ago! I don't want to overdo things, but at the same time I want to regain my fitness and mobility as fast as prudently possible. Doing a little more every day is the best way to achieve that, I think.

Chris
User
Posted 11 Sep 2018 at 13:46

Marvellous news Chris, get fit slowly

User
Posted 11 Sep 2018 at 14:09
Think you have the right approach to do more but gradually. It takes time for deep healing and you don't want to overdo it and set yourself back. More good news though.
Barry
User
Posted 11 Sep 2018 at 14:40
So pleased to see this - don't push yourself too hard though
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Sep 2018 at 15:31
What's the expression? "Strong drink giveth the desire but taketh away the ability"? I think I can now add "... and a month on bicalutamide taketh away both the desire AND the ability". First real side-effect I've noticed, but I guess it's good in that it shows it's working!

Chris
User
Posted 11 Sep 2018 at 16:01
It is only a month Chris. I was 11 months on Bical and randier than ever tbh. In fact now I’m potent again I’m like a kid in a sweetshop , just waiting to lose it again when I need treatment. Bical shouldn’t affect a man as much as injectable HT because it doesn’t remove all your testosterone— it simply disguises it from the cancer. But fatigue was a big issue in the first few weeks.

If life gives you lemons , then make lemonade
User
Posted 11 Sep 2018 at 16:11
Oh, I'm not bothered about it in the slightest, Chris. Just interested to note that the bicalutamide is obviously having an effect in that department, which strikes me as good, because it probably means that it's also doing what it should be and slowing down the cancer cells too. It'll be interesting to see what my PSA is in November when the next test is due, because it's not been measured since early May.

Chris
User
Posted 12 Sep 2018 at 09:16

A question for anyone with previous experience of abdominal surgery:


As advised by the district nurse, I’ve taken the dressing off my main incision this morning. Looks dramatically better than it did when it had the staples in! There’s quite a thick “ridge” of skin where the two sides of the incision have joined together, and I can feel a constant “pull” in my side from this. Should this ease off as the wound heals, or is there anything I can do to make the skin more flexible (creams, etc)? Obviously it’s very early days yet - only 11 days since I had my surgery - and I don’t want to do anything that’ll put the healing process at risk, but if anyone does have any advice on how to encourage the scar to heal as cleanly as possible I’d be grateful.


Thanks,


Chris

Edited by member 12 Sep 2018 at 09:33  | Reason: Missed out a word

User
Posted 12 Sep 2018 at 09:53
Massaging it with something like bio-oil or Boots scar cream may help. Often found in the maternity section of Boots.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Sep 2018 at 10:28
Yes anything rich in Vitamin E basically

If life gives you lemons , then make lemonade
User
Posted 12 Sep 2018 at 11:14
Thanks, that's very helpful.

Chris
User
Posted 12 Sep 2018 at 11:21
There are scar gel patches available which promote healing and lessen the intensity of the scar when it has healed.

The three out of my seven laparoscopic punctures that were slightly infected because the ‘dissolvable’ stitches did not, are still itchy three months after my surgery. Wish I had bought some patches.

Cheers, John
User
Posted 12 Sep 2018 at 12:21

Thanks, John.


When I saw the district nurse on Monday she spent quite a long time with tweezers and scissors, picking out and snipping off the loops of suture that were poking up above the surface of my keyhole wounds and scratching, which made things a lot more comfortable. Of those wounds, three are now clean and dry and healing nicely. The fourth one is right on my waistline and still dressed and draining a bit, because it keeps being irritated by the waistline of my trousers, but it's a heck of a lot better than it was a week ago. I've now switched to wearing trousers with an elasticated waistline rather than a belt, to help it heal. The main incision is looking unbelievably better than it did on Monday - the actual incision is just a raised pink line, and the 28 staple holes have all formed scabs on them and the inflammation around them has greatly reduced. Very happy with how quickly things are healing!


Chris

Edited by member 12 Sep 2018 at 12:26  | Reason: Not specified

User
Posted 12 Sep 2018 at 13:16

Chris


my wife has had full knee replacement done on both knees. Interesting was that both done in same hospital by same consultant 1 with staples the other sutures.


i was shocked when I saw her leg when the staples came out and the join looked like a mountain ridge. 3 months after regular aloe vera massages I can tell you the 8 inch scar is almost invisible 

User
Posted 12 Sep 2018 at 13:32
Thanks, Alan - that's very reassuring to hear!

Chris

User
Posted 12 Sep 2018 at 14:25
I had a ‘lightbulb moment’ following the irritation I suffered from my wounds, when a friend said ‘I always have to have my stitches removed as they never dissolve in my body’. I realised I was probably the same!

I think I went to the nurse three times to have fine fishing line sutures removed, and then three courses of antibiotics to cure the infections that were caused by their failure to dissolve as intended.

Cheers, John.
User
Posted 12 Sep 2018 at 17:42
I emailed my surgeon about the “pulling” I’m feeling from the main incision, and he’s replied saying that it’s coming from the internal sutures he’s put in the layers of muscle under the skin, and should go away when those sutures start dissolving in 3-4 weeks time.

Chris
User
Posted 12 Sep 2018 at 18:04
Hi Chris,
I don’t mean to be negative , but my pain has never disappeared in a band across my abdomen since surgery 3 1/2 yrs ago. I did speak to my surgeon 6 months post op and he glibly said it was nothing he had done and was possibly a gastro condition lol. Same bloke that told me I couldn’t have 5mg Cialis and it was psychological that it was working for me. My GP said I’d been left with internal adhesions which I think is true. To this day , if my bladder is full or I really need a poo , I have needle like pains inside which are quite severe. If I wake up with a full bladder I can’t actually sit but have to roll out of bed instead. Given my situation now I pretty much rue the day I was coerced into having surgery. Yet if I was undetectable I’d be happy to put up with it all. Hope it improves for you. Early days ok !

If life gives you lemons , then make lemonade
User
Posted 12 Sep 2018 at 18:30
Sorry to hear that, Chris. I’m in no pain now (that disappeared when the surgical staples came out); it’s literally just that the main incision is sitting about an inch below the level of the surrounding skin (or fat, to be more accurate!) because it’s pulling everything inwards. As you rightly say, it’s early days yet - only 11 days since major surgery, and the surgeon told me beforehand that it would probably take 6-8 weeks to recover from it.

Chris
User
Posted 12 Sep 2018 at 21:54
Well, this is annoying!

Last weekend I had constipation so severe I finished up in hospital; now I've got awful diarrhoea that just won't go away. Perhaps not too surprising considering the amount of laxatives I was knocking back a few days ago.

Taken Imodium as a temporary measure, but has anyone any views on how best to get things back on an even keel? High fibre or low fibre? I've been going for the high fibre this last 2 days - wholemeal bread, high-fibre cereals, etc. Is that the wrong approach? Maybe I should be on bananas and boiled rice?

Chris
User
Posted 13 Sep 2018 at 00:03

Perhaps we all have our own ideas and taste on what's best, getting the level right for your own rate of digestion and sensitivities.  I'd recommend trying to cut back taking tablets and eating 'real' food, i.e. not processed food.  By that I mean baked potatoes, beans, greens, muesli, fruit and wholegrain bread.   I add bran to muesli according to how I feel, there's a spelt bran with a union jack on the box that's quite good tasting.   The best loosener I've found is adding more ground linseed to the muesli than looks right.   I never look for hardener but usually blame dehydration and going on a long drive which probably mixes dehydration with stagnation and vibration.  I don't think many have a diet like we do, it's my wifes fault.

User
Posted 13 Sep 2018 at 00:06
Thanks, Peter. Feeling a bit fed up with all this, to be honest with you! In the last couple of weeks I’ve really been through the wringer. Oh well, such is the road to recovery, so shouldn’t complain. Well, perhaps just a little bit...

Chris
User
Posted 13 Sep 2018 at 00:41
I suppose the ideal would be to work towards what your diet was prior to treatment if it produced good results, perhaps making some compromises towards a more healthy diet anyway. Could side effects of any tablets or medicine play a part I wonder?

I have had to take a laxative capsules each day for a number of years now, although my wife has no problem on the same diet and beverages. I find this helps with constipation but occasionally results in slight looseness. Maybe it's due to hereditary to some extent. I remember my mother used to soak senna pods in water and drink, so she had the same problem and this was years before she died. She nevertheless lived to 101!

I think it's better to be a little loose rather than constipated at any time but particularly after surgery when straining could do damage.
Barry
User
Posted 13 Sep 2018 at 18:33
Omelette or quiche tend to bung me up.....

Probably better to stick to a reasonable amount of roughage ( wholemeal bread and bran flakes in my world) rather than swinging right back the other way though.

Ref the exercise question, I've rediscovered swimming after a 15 year gap. Low impact and works the whole body. Been doing it twice a week for the last three weeks and worked my way up to 2k this morning. May have been a bit too much as very weary now!

Nick
User
Posted 13 Sep 2018 at 18:41

I’ve just started swimming again after 4 years. I could only manage 500mtrs each time, hope to get it up to 1km twice a week from October. I openly admit to being a prolific cyclist and am now up to 120 miles a week after finishing my RT. I also am walking 4 miles a week in two sessions.


all of this is done sedately and sensibily 


Diet wise I start my day on rolled oats porridge, whole grain sandwich and ham is a lunchtime favourite, snacks of lots of fruit, ending up with three veg, meat and varied spuds

User
Posted 13 Sep 2018 at 19:33
Thanks, all. Had a bit of a “down day” yesterday, but feeling much better today. Sometimes everything I’ve been through recently all becomes a little bit overwhelming! I guess we all have our bad days along this journey.

Saw the district nurse again today and had the dressing taken off my final surgical wound, so that’s good. I need to sit around the house for a while now because the newly-exposed wound needs to “harden up” and because it’s right at my waistline it rubs when I walk, so trying to keep movement to a minimum for a couple of days. Diarrhoea’s a lot better today, too, so a better day all around.

Chris
User
Posted 13 Sep 2018 at 21:39
It is okay to have a bad day or to feel overwhelmed - you have had so much to deal with and I think you have been amazing so far but many people experience something like PTSD once the treatment is over.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Sep 2018 at 08:22

Originally Posted by: Online Community Member
Thanks, all. Had a bit of a “down day” yesterday, but feeling much better today. Sometimes everything I’ve been through recently all becomes a little bit overwhelming! I guess we all have our bad days along this journey.

Saw the district nurse again today and had the dressing taken off my final surgical wound, so that’s good. I need to sit around the house for a while now because the newly-exposed wound needs to “harden up” and because it’s right at my waistline it rubs when I walk, so trying to keep movement to a minimum for a couple of days. Diarrhoea’s a lot better today, too, so a better day all around.

Chris


Sounds like all the excuse I would need to binge watch "Breaking Bad" again! !!

User
Posted 16 Sep 2018 at 08:30
A quick update:

Now two weeks post-surgery, and things seem to be going pretty well. All 5 of my surgical wounds are healing nicely (I take a picture every couple of days on my phone, and the change is very noticeable going through the sequence). Daily walks are now up to 1.5 miles with no discomfort. I haven't needed any pain medication for the last several days and (thank goodness!) the diahorea has completely gone away. I see my consultant on 11th October (6 weeks post-op) at which time I'll find out the lab results from the removed kidney. Hoping there won't be any unpleasant surprises then!

The next "event" on my calendar is a full blood test at my GPs on Wednesday to make sure that the bicalutamide I'm taking for the PCa isn't causing any liver damage. Tomorrow I'll have been on it for a month. The only real side-effect I've noticed is a complete and utter lack of libido.

I'm planning to go back to work at the start of November (I've been on long-term sick-leave since my cancer diagnosis back in May), although I expect I'll need more time off when I start my RT in Feb. My employers are fine with that.

So, we're getting there!

Chris


User
Posted 16 Sep 2018 at 11:35

Glad to hear things are improving Chris.


Ian

User
Posted 16 Sep 2018 at 12:49
Great update
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Sep 2018 at 14:29

Great news Chris. I’m now 12 days post end of radiotherapy and the side effects are beginning to fade. Urination frequency is easing and diarrhoea has gon as well. So im back to where I was pre RT just about.


Ive now just got to be a glass half full person waiting for my post RT PSA test 8th November. As I was T2c i know the outcome should be as expected, but can’t help being apprehensive.


good luck with the rest of your treatment mate and keep yourself fit and healthy. I’m going back onto dieting from today as I have put a stone on since starting Hormone Therapy last April, weight gain is a known side-effect of hormone therapy but also the antidepressants I’m on called mirtazapine also can cause weight gain so I’ve got to start working at it as my waist has a spare tire and my chest is getting embarrassing 


alan

User
Posted 16 Sep 2018 at 20:09
Great news about the improvement in the RT symptoms, Alan! I understand exactly what you mean about waiting for the PSA results - I'm on tenterhooks waiting to find out what the bicalutamide has done to my PSA, which I too find out in November. I'm hopeful it will have come down significantly, because a month on HT has had a dramatic effect on me: my penis seems to have shrunk to about half its previous length, zero erections (or desire) and very tender testicles - if I put even slight pressure on them as I sit down or stand up it makes me wince. Does anyone know if that's a common side effect of bicalutamide?

Trying to get as fit as I can without overdoing it. It's a bit sad when, as a previously keen walker who did a 10-12 mike walk most weekends with my local Ramblers group and thinking nothing of it, I'm now sweating and exhausted after walking a mile and a half. Still, I'm sure that'll improve over time.

All the best,

Chris


User
Posted 16 Sep 2018 at 20:16
Chris, I had 14 days on Bicalutamide 50mg, The intention of this was to reduce the chance of a testosterone flare before I started on the Triptorelin Hormone Therapy. At the 14 day point I had my first injection of triptorelin then I continued on the Bicalutamide for another 14 days only.
So from 8th April till my review PSA test on 10th June my PSA went from 38 down to 6. That was over 8 weeks. I hope yours performs better!
User
Posted 16 Sep 2018 at 20:23
Cheers, Alan. As I say, my only issue thus far has been the tenderness in the testicles. I’ll be speaking to my oncologist on the phone in a little over a week to tell him the results of the blood test I’m having this Wednesday, so I’ll ask him about that then. I suppose it’s possible it’s a side-effect of the surgery, but the HT seems the more likely culprit. I’ll see what he thinks, anyway.

Chris
User
Posted 16 Sep 2018 at 20:50
It’s weird how we all get different reactions to side effects. I get no other symptoms from the hormone therapy other than hot flushes, dry ejaculations (only after a much longer foreplay) and a bit of fatigue.
The other thing I am worried about is the effect it’s going to have on my muscles as I am still an active sportsmen and like to compete in the over 65 age group in cycling. Physio advise I have had is to start doing resistance training to try and offset the muscle wasting and bone issues associated with hormone therapy.
User
Posted 18 Sep 2018 at 13:23

I emailed my surgeon about the pain in my (left only) testicle, and he said that it could be surgical bruising, but advised me to have it checked out by my GP. I saw my GP this morning, and he's diagnosed epididymitis - an infection of the duct that goes from the testicle to the prostate - and put me on a course of antibiotics to get rid of it. He's also sending me for an ultrasound scan as a precaution, but says he's certain that this is what it is.


I'm pleased it's been diagnosed, anyway, because it's flipping painful!


Chris

Edited by member 18 Sep 2018 at 13:24  | Reason: Not specified

User
Posted 21 Sep 2018 at 14:46
On Wednesday, at the request of my oncologist, I had a blood test to check that the bicalutimide isn’t causing any liver damage, and thankfully it’s come back as normal, meaning I’m OK to stay on it, so that’s good news.

Chris
User
Posted 22 Sep 2018 at 19:31
Having a rough day today mentally. I always knew intellectually that it was probably going to take me 6-8 weeks to get over my surgery, but today has been one of those (fortunately rare) days when I just think "Why me?" and everything I've gone through in the last few months and the fact I'm still so physically incapacitated three weeks after surgery all gets a bit overwhelming.

It started with something stupid and trivial - I was reversing my car out of my garage this morning which I must have done literally thousands of times before when for absolutely no reason I scraped the wing mirror on the garage door frame. I just sat there and burst into tears for no reason at all, and that was just the start of what's been a horrendous day when I can't help thinking about all the awful things that RT might do to me, and do I really want to go through with it?

Taken some Diazepam to calm me down which I've not needed for months. No idea why this all suddenly came over me.

Think I'll get an early night and hopefully the world will seem a bit brighter again tomorrow.

Chris

 
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