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Today is the First Day of the Rest of my Life

User
Posted 19 Jan 2015 at 19:49

Great news Steve, been thinking about you all day and clock watching, wondering how you are getting on.

 

One thing at a time now.

 

Alison x

User
Posted 20 Jan 2015 at 02:45

Hi,

I'm overwhelmed by the messages you have all posted.  Thank you.

Sorry I haven't posted since this morning but I felt really tired following the angioplasty and trying to post, left handed, proved quite difficult.  I'm very much a right handed person so I'm finding having to avoid any use of my right arm, a bit difficult (this is because during the procedure, your right wrist is cut and you have to give it chance to heal, keeping it straight for 24 hours, no heavy lifting for a week).  I actually spent most of the day resting but not really being able to sleep much (which is what I really needed after a fairly sleepless night). I did keep checking on your messages though which helped a lot, as no visitors were allowed on the ward.

I was allowed home just before 5pm and went straight to bed until now.  I must try and get back into normal sleep patterns.

Well, the angioplasty went well in unblocking the left coronary artery as planned.  When it came to expanding the artery to put the metal stent in, I found it quiet painful this time, but that part barely lasted a  couple of minutes.  It's a procedure which I would happily do again if it was found to be necessary.

When I was reviewed by my consultant, he felt things had gone well but on later examination of the pictures, found that I had another problem with my heart which hadn't been detected before.  He said that it appeared that part of the wall of one of my coronary arteries is thinner than it should be, so he is going to have to keep me on certain drugs longer than he expected to do (including one that doesn't allow you to drink alcohol, sob!).  He also said he would do another angiogram in about a year and following that, may need to give me another operation to sort that out.  Not sure what that would involve, I'll have to read up about it.

Apart from that, he said that I should make a good recovery and was quite happy that after a suitable rest, I could start running again.  Unfortunately, not in time for me to run the Reading Half Marathon in March as I'd planned to.

I phoned my cardiac rehab nurse a few hours after the op and she was so relieved it had gone well.  She said she had been quite concerned about my condition leading up to this point.  She said she would have been sorry to "loose" me before she had chance to torture me with her exercise sessions. She told me she has already booked me in for her rehab fitness sessions starting on Tuesday, 3rd Feb. I'm looking forward to it. At least I can get fit while being closely monitored.  She has really helped me get through this. 

It's a shame to say this but I could have done with the same support from my uro oncology support nurses.  I know they must be very busy but it's noticeable how much more supportive the cardiac care team are than the cancer team.  I suppose it was probably that my heart problem was considered to more life threatening than my cancer at this stage.  It could be a matter of funding and staffing levels too. The cardiac team have actually won an award for being the best centre in the country which I would fully agree with.   

Well I feel much happier that particular heart problem is out of the way.  I now have a sigmoidoscopy (look it up) to look forward to, a week on Friday (the 30th), having been finally referred by my oncologist to investigate possible radiotherapy damage.  It's all good fun.

My 60th. birthday gift from the NHS was a screening test for possible bowel cancer, received in the post earlier this month thought when I have the sigmoidoscopy, it may not be necessary to do the test sent to me as that will have a better chance of detecting any possible cancer.

Anyway, thanks again for the support you have shown me, I hope I'm able to the same for others.

"Today is the First Day of the Rest of my Life".

Steve



Edited by member 20 Jan 2015 at 03:08  | Reason: Not specified

User
Posted 20 Jan 2015 at 06:22
Hi Steve, you certainly don't do things by halves! So glad you are with it still, hope you get some quality sleep soon. Kev. Today is a good day

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 20 Jan 2015 at 07:13

Hello Steve!

Glad that you are home and may you continue to improve!

Don't feel the need to apologise because you have not been able to post for a few hours (especially considering what you have been through!!).

Yes - we want to hear from you, but as and when you feel like it! These forums can get addictive (me myself checking how everyone is getting on several times a day!) and are a fabulous help I know.

Get yourself through this bad patch and look forward to spending time with that little baby grandson of yours.

Must be a big relief for your wife too to have you home.

 

all the best

Alison x

User
Posted 20 Jan 2015 at 08:24

Glad you're home Steve.
Rest up now like a good boy ready for that cardio nurse to really put you through your torture, ahem, I meant exercises.

Not many of us has a personal trainer!!

Get well soon

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 20 Jan 2015 at 08:41

Great to hear you are doing well Steve.
Sigmoidoscopy, ouch - I did look it up :)

Kick back, chill out and get well my friend.
..and don't clench during your sigmoidoscopy.

All the best

Kevin

User
Posted 20 Jan 2015 at 12:41

Hi Steve,

Glad to hear everything went so well and you are back at home so soon.  Good that they've set you up with some post-operative stuff to help you back to full fitness.  Keep posting - yours are always the first posts i read!

Arthur

User
Posted 20 Jan 2015 at 13:22

Hi Steve,

Very pleased to read that your heart procedure went well and you will be at last able to concentrate on your recovery program.

I had a sigmoidoscopy a few  years ago.... a simple procedure and nothing to worry about.

I was advised not to bother with the National Bowel Screening Program that was due at that time, but to participate in it when screening was due again 2 years later...

Of course that advice may not be appropriate for you...

Best Wishes 
Luther

Edited by member 20 Jan 2015 at 13:40  | Reason: Not specified

User
Posted 20 Jan 2015 at 13:46

Interestingly the bowel screening is a very good test and if you have this option to do it now well worth it. A late friend of mine had it done when he received the package through the post at 60 and it did lead to diagnosis of Bowen Cancer but too late to help him survive and he died within eight months. So if the opportunity is there certainly consider it!

User
Posted 20 Jan 2015 at 14:17

So glad you have had your op and things are looking up. I will continue to think of you ! We had the same with the onco-urology nurses here, a great idea in principle but always me telling them what was happening and asking if they could do something !! But pleased the cardiac people are supportive !

 

All the best, Fiona.

User
Posted 20 Jan 2015 at 20:58

Funny you should say that about the Cardiac Team we have been to different ones all across the Country and are now at Pappworth and have found them all plus the follow up Rehab Nurses to be excellent I think Oncology could learn a thing or two from them. 

Trevor had his Bowel screening kit around 3 years ago which he dutifully did, (came back normal ) and has just had a new one sent to him. We  decided to throw it in the bin, don't get me wrong this is not something I would advise anyone else to do . I am all in favour of screening but we felt heck with our luck that might be a bridge too far.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Brilliant news you are home, 24hrs and you will be typing away again.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Jan 2015 at 02:24

Hi,

Thanks for all your messages.

It's interesting that others have noticed that the uro oncology nurses support system seems to fail quite often. As I said, maybe due to lack of staff and funding.

I'm definitely going to have the sigmoidoscopy next week.  Not really what I would describe as the highlight of my week but it's necessary.

I will try and relax as much as I can but nothing could be quite as bad as the aggressive, two finger, rectal examination done by an A&E doctor when I was admitted with my heart attack in November.  Because of my large blood loss from my rectum before admission, they needed to know if my very low blood pressure was possibly due to that.  I would have to describe the examination as borderline sexual assault, it was so painful.  I have had several done during the course of my treatment but never as painful as that.

I noticed, late on Monday evening, after I arrived home from the hospital, that when I went to the loo to have a pee that my flow had reduced to a trickle.  Prior to the hospital visit on Sunday, my flow was very strong, as it has been for quite a while since I originally had flow problems during radiotherapy.  I have been on Tamsulosin tablets ever since and didn't expect to have problems like that again but all today, it has been the same, very little flow.  In spite of the 2 to 3 litres of water I have drunk today, I have seemed to have passed very little urine.  I wonder if any one the drugs used during the operation could be the cause.  It would hardly be surprising in view of the 13 medications I'm currently on.

Looking at the internet, it recommended that I should check my weight which I did and between 9am this morning and 10pm this evening, I have gained four pounds!  I have no pain but it must be going somewhere. 

Has anyone had problems like this before?

Thanks.

Steve

 

Edited by member 21 Jan 2015 at 02:58  | Reason: Not specified

User
Posted 21 Jan 2015 at 10:02

If you are drinking but not peeing Steve, it must be somewhere so hence the weight.
Do you have swelling anywhere, ankles, feet, face?

Anyway, since you do have such a good cardiac care team why not just ring and explain and ask for advice. At the very least they'll be able to say yep that's the combination of the 13 drugs doing it and you'll know where you stand.

Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 21 Jan 2015 at 10:26

Hi Sandra,

I did talk about it with my cardiac rehab nurse yesterday, she'd never come across that before but told me to see how it goes today. 

I said I may try and see my GP today if it doesn't improve.  Not causing any pain so far or any swelling.

Thanks,

Steve

User
Posted 21 Jan 2015 at 18:59

Steve,This is potentially dangerous.  Go to A/E if havent seen GP as it could effect your heart.  Please look after yourself and dont feel you might be wasting time. 

User
Posted 22 Jan 2015 at 11:49
Hi,

Just called the cardiac unit who carried out my angioplasty to discuss my pee flow problems and they want me to contact my GP and get an urgent appointment.

I had pains in my kidneys this morning.

I'm going to see the GP this afternoon, not available until then.

Hope it gets sorted.

Steve

User
Posted 22 Jan 2015 at 14:28

Hi Steve,

It is good that you have had the angioplasty. But you are still not yet in a good place.

Looking at your recent posts about your reduced flow I see that your Cardiac Rehabilitation Nurse has not seen this situation before and advised you to wait and see how it goes! Your cardiac unit has now told you to contact your GP for an urgent appointment. You will be seeing your GP this afternoon but based on what you have said you always have the option to phone your Urologist or her Secretary straight away and tell her about your retention problem and the advice from your cardiac unit. Ask if she or someone could speak to your Urologist about your waterworks problem. If you cannot raise anyone in your Uro Team try to speak directly to your Urologist's Secretary.

You mentioned that your Oncologist has arranged for you to have a sigmoidoscopy to find out what is causing your bleeding. You have now received a bowel cancer screening kit and you are wondering whether you need to use kit if you are having a sigmoidoscopy. The short answer is that these two procedures serve a different purpose. You have the test kit so why not use it?

You may not know that the Bowel Cancer Screening Programme now includes a once only Bowel Scope Screening test at age 55. Bowel Scope Screening uses a flexible sigmoidoscopy procedure carried out in the same way as the sigmoidoscopy procedure which your Oncologist has arranged for you because of your rectal bleeding. Bowel Scope Screening looks for polyps, some of which may be pre cancerous, as well as any other condition which may need to be investigated further.

Have a look at the Bowel Cancer Screening website at the link below.

http://www.cancerscreening.nhs.uk/bowel/index.html

Open the leaflet “Bowel Scope Screening” at the bottom of the page. On page 5 of the leaflet there is a warning that anyone who has certain health problems may not be able to have a sigmoidoscopy under the Bowel Scope Screening arrangements The 3rd bullet point shows that one of the health problems is if you “are waiting for heart surgery or have had heart surgery in the last three months.”

It looks to me that this warning applies to the sigmoidoscopy procedure and not for the clinical reason for which it is used. Your Oncologist may already have considered this with your cardiologist, but perhaps you may wish confirm the position with your Oncologist and that it is OK for you to have the procedure. I have not heard of this restriction before and I cannot find an equivalent warning about having flexible sigmoidoscopy on other websites.

The sigmoidoscopy is usually performed by a General Surgeon. I don’t wish to be alarmist over this but when you have medics from a number different specialisms looking after you it is best to be sure that everyone knows what is going on.. ... perhaps they do in which case there will not be a problem with having a sigmoidoscopy.

I have had a couple of sigmoidoscopy’s and for me this is a very straightforward procedure.

I hope this is useful for you and you get things sorted quickly.

Alan

Edited by member 22 Jan 2015 at 14:38  | Reason: Not specified

User
Posted 22 Jan 2015 at 20:07

Really helpful posting from ART.

How did it go Steve?

Alison

User
Posted 23 Jan 2015 at 03:19
Hi,

Thanks Alison and Alan.

Alan, I appreciate all the really useful information in your post. I will follow this up before next week. Thanks.

Saw a GP this afternoon, not my regular one unusually, but a very nice female doctor who I've know for many years (she lives just the corner from me).

She thought it was unusual that I was suffering this problem and thought the best thing to do at the moment was to send me for a urine test and a blood test to see if I might have a kidney infection. I'm going to the hospital first thing in the morning, so hopefully the results will be fairly quick. I just want this to be sorted because apart from this problem, I feel so much better since the op at the start of the week.

If it's nothing serious, I can live with it for a while, as I have done before, during RT. I just don't want to ignore something which later turns out to be something I should have dealt with.

One good thing to come out of the GP appointment was that she suggested that, as I was having a blood test anyway, it would be a good chance to check on my PSA at the same time (she must have read my mind).

So, I hope the tests help get things sorted. I'm fed up of life being complicated.

Steve

Edited by member 23 Jan 2015 at 03:32  | Reason: Not specified

User
Posted 23 Jan 2015 at 07:03

Glad you're feeling better Steve (I told you so...!)

Don't be fed up - I'm glad you are still around to have that annoyance!!

Hope the results today are what you want.

All the best

Sandra

We can't control the winds - but we can adjust our sails
 
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