pompei's blog

He's Gone

2010-10-31T14:51:23Z

It's been a long time since my last blog and sadly, this is my last blog.

My lovely, uncomplaining husband passed away on 25th Oct. 2010.

He fought so strongly for eighteen months, way past the anticipated time that the Drs. had given.

Now, I'm totally lost. I can't think straight, I can't do anything, I miss him so much. The hurt is so great that I can't stop crying. Dear God, help me please.

How bad can this 'thing' get!

2010-03-17T00:10:10Z

Hi Everybody,

Long time again since last Blog and things don't get any better. Having had lots of problems with the Nephrostomy Tube fitted to my Husband's good kidney as he lost the use of the left side one during Chemo, we now face mets to the brain and 5 days of Radio in Liverpool. Also, he has involuntary movements in his arms and legs to the point where a cup of tea can get flung into the air and his legs just crumble underneath him. The Onc. doesn't have an answer for this, but then, they aren't doing any more scans, I had to push for the Brain Scan as I thought that something just wasn't right since Christmas time.

He is so good and never complains even though he knows that his brain is 'acting up', but I think that I am nearing Tether's End. It's so difficult trying to make him understand what I'm trying to say. Sometimes he grasps straightaway, other times he answers with a completely different topic so I just agree, it's easier.

And so we look forward to some more sleepless nights. I just feel so inadequate even though I'm doing all that I can. Just don't know why I bother praying anymore.

Thank you if you read this.

Love, Tricia. X

Anybody online 10.30pm Tues.9th Feb?

2010-02-07T21:21:29Z

Hi Everybody,

A little 'background'.

My friend, Bernie Quayle, is a presenter on our local radio station, www.manxradio.com (though listeners are worldwide via the Net). His programme is aired from 10pm - 1am Mon-Fri.

I have asked Bernie to play a request for all of you at 10.30pm on Tues. 9th Feb. (just click on the 'listen now')

Bernie was diagnosed with Brain Cancer in July,'09 and underwent chemo, surgery and radio and so is well aware of this dreadful disease. His treatment was successful and we are now sooo happy to have him back behind the 'mic' You can also see him if you click on the Webcam on the left of the page, and just click each one until you find Studio A. (too difficult for me to direct you to- durr)

Hoping that some of you can listen.

With love and courage,

Tricia. X

Walking on eggshells.

2010-02-02T21:40:33Z

Well, my husband had his 10 days radiotherapy in Dec.09 (not Nov.as I said previously) which he sailed through with only minor tiredness.

Christmas and New Year were spent very quietly, on our own. How difficult it is to make conversation when both are watching the same television programmes and only talking to the MacMillan Nurse every ten or so days.

The only follow-up appointment my husband has is with the Oncologist on the 18th Feb. Our Mac Nurse says that this is only to ask, 'How did you cope with radiotherap?'. That's it. A feeling of abandonment, again, when I really need to know why my husband, who was always a gentleman, is talking to me like I've just fallen off his shoe, is so aggressive and argumentative. My nerves are frazzled and yes, I am walking on eggshells.

He's also finding it hard to think straight. You know, leaping from silly topic to another silly topic and then sometimes replying with words that have nothing to do with what I've said. Oh dear, he's now just told me that he's never had Branston Pickle in his life....What?

I quietly asked the Mac Nurse if she thought that something bad was going on. She said that as my husband isn't suffering from headaches then she didn't think so, and as the 1 per day morphine capsule has been decreased in strength, neither she or the G.P. had an answer.

I really hope that this is a phase. Perhaps he is counting the months and worrying himself to death and just can't tell me and so just gets angry.

Anybody had experience of this? Please God, don't let this attitude get any worse.

Any replies really appreciated.

Much love to all,

Tricia. XXX (The rabbit in the headlights)

And more and more and more bad news

2009-12-02T23:06:42Z

It's been a long time since my last blog but life has been too horrendous to write about, not just for me but for anyone reading. So for all our sakes, I'm just going to write this quickly so that I don't have to think too much

My husband got to his 3rd Cycle of chemotherapy, had an MRI, and the chemo was stopped as it just wasn't working. More fear.

Then twice, 999 in the middle of the night with blockages and renal failure in left kidney. After two weeks of suffering in hospital (and being totally mad for the first week through toxins in built up urine and too much morphine) they decide to do a CT Scan. This was on 17th Nov. At this point we hadn't even been given the result of the MRI, even though we kept asking. On 24th Nov. we received a letter saying to make arrangements to be at Clatterbridge Hospital for Oncology in Liverpool for Planning for Radiotherepy. What? Still no results of anything and no-one to talk to as the Oncologist is in L/pool and not getatable. We flew to L/pool for the day last Monday (30th Nov.) My husband's Oncologist had decided to take the day off, the Radiologist said. Well, that was the last straw. I demanded to speak with somebody from his team .......and then the bombshell........my poor husband who was all but abandoned by the medical professional from the very beginning, (see my profile).....has three to six months to live.

We are going through every emotion but anger is top of our list. How do I keep strong for him when I have to hide in the toilet crying? If I could drive to the beach to scream it may help but I wouldn't leave him. It's just not fair. I just know nothing anymore.

Love and good wishes,

Tricia. X

Yet more bad news.

2009-07-07T21:49:48Z

It just gets worse...... Nine weeks (to the day) after my husband's biopsy, having been diagnosed with Advanced, Invasive Bladder Cancer, we get the long awaited 'phone call. "Would you like to come to the hospital for a talk?", said the Urology Nurse. "Yes", I said, "That would be better than the telephone". She then said that she would give a brief summary now. I said that I would put her on 'speaker'. She then blurted out, in the nicest possible way, that my husband is inoperable and that all they could offer was chemo to slow the Cancer down. Well, words cannot describe our faces and right now I cannot think of an appropriate adjective for our feelings. She said that a MacMillan Nurse would be calling but at this point I really don't know what anyone can do. We now wait another two weeks for an up-to-date CT Scan and then see the 'guy' from Liverpool on his weekly visit. Sorry, can't smile but really pray that some of you have private medical care as the waiting has caused this situation. My husband was diagnosed in Spain, in February, whilst on holiday.At that time it was solely confined to the Bladder Yes, it took three weeks to get home due to the ferries not having space for the motorhome, but the waiting from then on is 'your life in their hands'.This really is where having hard cash comes into play. The Spanish Consultant was prepared to operate straight away, but we couldn't pay him with our house. Much love and every good wish to you all, Tricia. X

Long time for bad news

2009-06-11T19:54:56Z

Hi everybody, I have been following all of your posts while awaiting the outcome of my husband's biopsy. Today, after waiting over 5 weeks, we finally heard the worst. After the first diagnosis in Spain in March when the Cancer was in the bladder only, today we were told that it had spread through the muscle to prostate and lymph nodes. We now have to wait a further 2 weeks to find what the Medical Team in Liverpool, our nearest Cancer Hospital, can do. Our local consultant said that there are only two options. 1. Removal of bladder, prostate and all lymph nodes in the area or 2.If the spread is too great then only chemo/radio. We are dumbfounded. The waiting is just unacceptable for a type of cancer that they say is one of the most curable - if caught in time. How long is time when the medical profession are the people keeping us waiting? Health Service cut-backs don't only apply in England. We were told by the Consultant that they didn't have the staff in the Path Lab, thus 5 weeks for biopsy results, and to complain to our Government. Oh yes. the song 'One Voice' springs to mind. Sorry to go on, I'm angry and devastated and just sitting here watching my husband in pain (the painkillers don't work all of the time) and we've done all the talking. Now I'm ranting on and at the same time thinking how far has this demon spread since the biopsy 5 wks ago. Love to all, Tricia.X.