Pam,
I just wish you could take a "leave of absence". You are in no shape to even put your body together to get ready let alone go to the office. I can't imagine having to go to work. I am fortunate, I no longer work outside the home anymore.

I deal with the 24/7 pain and as your situation with DB is similar in some ways. My husband is almost impossible to have a conversation or even get responses most of the time. We can talk about the news or some things going on in the world; but not about us or our situation; let along to even ask "how do you feel".

My belly/groin issues/pain override the PN and the spine pain. The cancerous rectum removal was difficult enough; but it all worsened when I had the three Ventral Incisional (abdominal) hernias with mesh repaired 1 1/2 years ago. The tummy pain was bad enough but after the surgery am now dealing with awful Bursitis pain in both groin areas.

The constant "potty" trips because of needing to keep things pretty loose just adds to the pain in those areas. The worst is in the afternoon after lunch along with already have taken 2 Miralax. The colon goes into spasms and often feel like I'm going to pass out while on the "potty". Lately I have been having to take something for pain, along with a Vallium and lay down in bed until things calm down. This afternoon was no exception. I told my husband my pain was really bad and I was going to lay down; (but of course, first told him what I was planning on making for dinner). When I got up, he was reading; never looked up or even asked if I felt any better.

That hurts more than the physical pain. I know you are dealing with the same thing. It really is sad.

Pam, I Pray; "No more Bowel Obstructions"........


Gerry

High, very high on my list of concerns is a bowel obstruction and to make matters harder, I'm back on the same ward I last time room 11. So nothing has changed except some of the nurses. With all the meds I'm on and the amount of times I've been in here you would think they know my history. Last night all she would give me Is coloxyl. I kept saying it won't work, the senior nurse wouldn't listen. Sure enough I've got overflow!

A bowel obstruction is the least of my worries, I might have a severe bone infectuin or I might have bone cancer. Will find out Tuesday. It's 5.30am old habits die hard, I'm wide awake,

Oh my gosh Pam; What brought on this possibility ????

I don't know really, they've been in and out and done a zillion tests and all these grand doctors keep. On coming in to see me, heads of departments etc etc. I have to have the Gallium Scan on Monday midday ish. They did a kidney scans yesterday. It's relly good she said, and appear to be in very good health. Not sure why they wanted to check the kidneys, but may have been because back in 2001 I had the ureter blockage with the tissue mass which grew back 4 times and 4 times they had to out stents in. Anyhow Kidneys rocking and rolling well. She did say I have a very distorted sized bile duct but I can't see how that can affect anything.

I still have a very high temperature, I have high white blood cell count, very high markers for infection apparently, but I also apparently have markers for this bone cancer.

Narula came to see me and said if it's infection we will get you out of hospital asap to rest from home to heal and then we will get you back in because you need to have fusion on L3/4 or it might have been L2/3. I was I confess a bit shell shocked by then. This all in top of top of getting the message this week I have to have the mammogram tissue ultrasound again as the mammogram I had shows the tissue has changed considerable snce last 2 yr check up and has mass dense tissue. Atm I feel as though I've just be told I've got cancer everywhere. I'm sure I haven't, I reckon I don't have it at all, it's just how I feel today.

Mum just been to visit, angry she is I haven't heard from my nieces, brother or sister. I said don't worry about it mum, after I'm gone they will suddenly realise all that I do. It just upsets her. I said while she was here, no idea where it came from, maybe I'm on strong pain drugs, but I looked at her and said, have you heard from dad. As soon as I said it I started to cry and so did she. He is on both of our minds. It will be 5 years on August 20th. I said I sorry I don't know where it came from and she said it's ok, just rest. We went for a gentle stroll after to walk her to the lifted I hobbled back with the walker. I'm just so jolly tired.

If not raining too heavy she will come tomorrow, xxx

Pam,
Niggs (Nigel) posted on 7/27 sonnets 7, 8 & 9. Your interest delights him. For a change of pace; you may want to check them out. Hopefully brings thoughts away for even a short time from the hospital setting and all you are enduring.

Gerry

Pam,
Have you heard anything about the bone cancer/infection issues?

It appears you were pretty much told you needed to have a L-3-4 fusion or thereabout. Is this something you think you would be up to? I think you had mentioned in the past having had a fusion in either the cervical or lumbar area.

I had L4-5, along with a laminectomy some years back but still needed a series of Epidurals a year or two later in that area, which didn't help. Also had a failed SCS trial.

Since my mamo over a year ago revealed a growth on the back wall which appears not to look cancerous; but will have to have continued mamos/ultrasound regarding the growth every 4 -6 months. Have my third testing middle of this month.

As you mentioned; it does get overwhelming. But as you are a "fighter" as well; you will not give in or give up.

Sending prayers your way "my dear friend" to cope with all you are dealing with.


Gerry

Just got the scan results from my neuro earlier tonight. Good news - No to osteomyelitis and No to bone cancer. But I have got to keep an eye on the right breast tissue, you can see / feel it is denser than previously and the right nipple has started to invert ever so slightly. So much so I had to ask DB last year, has my nippple always looked like this - No! I've never had it before that I could recall and when they did the testing it was very sore to touch with the ultrasound. So I have to have 12 monthly checkups & if it turns in anymore or it looks to be turning a different colour, or I get a discharge of any kind, I have to go straight away to GP for referral. That's good news I think...

It does however seem I might have some sort of blood poisoning from the half titanium pedicle left behind in 1996 from the surgery in 1994. It may explain why my markers were so high (like really high) and why I keep throwing high white cell counts on and off for over the past 20 years. Now of course that has to be checked & needs to be done before Narula can proceed.

In the meantime L4/3/2 has disintegrated / deteriorated - which explains why I'm loosing height and the vertebrae needs to be removed preferably via an anterior procedure but because of many difficult stomach surgeries I've had and the difficulties they presented it is a real predicament for us all and so, and I absolutely must have a general surgeon present as well when they operate.

The not so good news ... If the titanium pedicle is in fact poisonous and a problem Narula will not do any procedure at all, so I simply must get that resolved first. If it's not a problem which I'm hoping for, they will leave it there inside L4 where it's been for the last 23 years and I can carry on. Truly it's not really caused any issues, the odd pain / awareness occasionally but in the main no real cause of any issue has been able to attributed directly to the "oh it's the 1/2 pedicle left behind" I do wonder if it has caused me pain on occasion, but the reality is it is more likely pain from where they took the bone from the laminectomies in 1978 & again in 1994. Laminectomy pain can last for 30 plus years I'm told....

I go home tomorow, I'm being discharged with yet more drugs of meds to be sure I will survive the next 3 weeks and not require hospitalisation or assistance for next 3 weeks so we can celebrate our anniversary. I will know more when I speak with neurosurgeon next week with my husband. The Neurosurgeon insists DB be there with me when we meet on account of the severity of the situation. To do nothing is not an answer either. My spine is crumbling at a rapid rate and my spinal cord will become compromised before long. Night xx

Your doctor needs to leave orders to be sure you get the necessary meds, etc.


Gerry