Mandy2105's blog

Martin is losing battle ..

2010-03-18T03:41:58Z

Unfortunately things are really bad for us now, Martin is so poorly. They removed the 2 small tumours from his lungs last May but when they opened him up to remove the tumour from his liver they found it was twisted around blood vessels which deemed it inoperable.

They gave him about 5 lots of chemo, which should have been done every other week but due to his low white blood cell count it ended up being every 2 weeks.

He was supposed to have 6 lots & then have a scan, but he started to get jaundiced & feel very tired so they scanned him after 5.

The scan showed the chemo had done nothing, the tumour had grown & another had appeared on his lungs. We was told there was no further treatment available & we left the hospital;

We updated our GP & our district nurses. They arranged for a Macmillan nurse to contact us, who gave us her card & told us to ring if we want her to come around at any time but I've not felt a need to, & just last week they sorted us out with a carer who comes in every morning to help Martin out of bed, washed & dressed & put someone from Hospice at Home in contact with us.

Martin has deteriorated a lot over the past 2 weeks.

Now he is very yellow, including his eyes. He has no energy, he sleeps a lot during the day. He is finding it very difficult to get up on his own, once we've helped him onto his feet he can shuffle to the toilet or the bedroom either holding my hand or shoulder for support. I've got him a wheelchair this week so I can take him out without worrying, just this Monday we had to go to the hospital to have his chemo line removed (big delay considering last chemo dose was Christmas week due to waiting list)

His mouth is sooo dry all the time making it difficult to understand him when he talks & chewing & swallowing food.

Steroids have improved his energy levels & appetite noticably but his decline has made friends & family take a sudden breath when they see him.

He has lost so much weight on his arms, back , face, neck & leg tops. The bottom of his legs, ankles & feet as well as his tummy are very swollen with fluid.

I look at photos just from Christmas & he doesn't look like my Martin any more.

Being the darling that he is he is trying to get a lot of jobs round the house that he has left for years sorted. Despite me telling him to leave it & not waste his energy I have got people knocking at my door endlessly, plasterer, builder, painter, man to take my settee away to cover it, as well as relatives & friends.

My work are being fantastic, I've got a lap top now so I am able to work from home. I've gone in for a few mornings this week but Im going to work from home tomorrow because he fell over yesterday morning & one of our girls had a lot of difficulty trying to help him up onto his feet.

Martin has organised a big family & friends party, the soonest we could get the hall was the 17th April. Im very concerned now, it feels like so far away.

We've organised a weekend break to Butlins next weekend with our girls & their boyfriends. They've sorted us ground floor accomodation, it is a 70's weekend, Im hoping Martin will be up for it as he is so looking forward to it.

One of our girls, Kelly, is having a baby. It's due early Sept, Martin is adament he will be here to see his first grandchild.

Im so frightened, so sad & so angry that we are going through this.

I realise Im a selfish cow when this site brings it home just how many of us are going through it.

Im sending my love out to all of you. xxxxxxxxx

Mandy

Still Waiting

2009-08-23T10:24:50Z

Martin rang our GP on Friday who said he had been in contact with the Oncology Dept at Northampton for us, but unfortunately had been unable to get us an update because the doctor he needed to speak to is off sick. He asked Martin to ring him again on Wednesday. Can you believe it. Surely if the doctor who is going to be dealing with your case is off sick or holiday, they have people in their teams to cover them, surely it doesn't all stop?? I work for a domestic repair company, no customer will accept not having their appliance repaired because one of my team is off sick - what a world we live in! Martin is looking a lot better this weekend, got some colour in his cheeks.

Been to see our GP today

2009-08-19T21:16:16Z

Martin had his stitches out on Monday & went back to see the nurse this morning for a check up & she said it was looking good. We went to see our GP this afternoon to update him. He was very sorry that it has now been diagnosed as inoperable, he has been with us through this journey. Our daughters have grown up together as we live in the same village, but because he is our doctor we have always kept a respectable distance. He told us he hasn't rec'd all the info from the hospital as yet, but he will chase it up & is going to contact the Oncology dept at Northampton to nudge them for us. He told us not to build up our hopes of any further operations, but honestly I don't think Martin & I were thinking that would be the case anyway. He has been through so many operations already bless him. He told Martin he needs to get eating, little & often, needs to build himself up ready for chemo. He hasn't been eating much but I cooked him steak & chips tonight & was happy that he nearly cleared his plate, obviously taking note of what the doctor said. Still looking pale, very quiet & thoughtful. He has this happy voice that he puts on when his mates ring up to see how he is. He's informed tonight that his mates are coming round to take him for a drink tomorrow night, Thursday nights have always been Boys Night Out, Im happy that he is doing it, I want us to get back into a bit of normality. I absolutely hate & resent the times we have to go through when our whole life seems to completely revolve around cancer, every phone call wanting an update, friends suddenly stop phoning or coming round because they dont know what to say, sympathy looks from work mates, hospital appointments, the waiting......it's so not fair!!!!

Got Him Home

2009-08-16T13:54:01Z

I've got him home from hospital now, he discharged himself late on Thursday night. He is very quiet, very pale - he is eating & drinking more than he did whilst he was in hospital which is a good thing. He never complains of any pain, I see him wince or take a deep breath every now & then & when I question him he says he is ok, just a bit uncomfortable. He's been getting up 4/5 times during the night for a wee, since his original bowel cancer operation he has always had a problem weeing. He says the only way he can tell he wants a wee is from a funny sensation he gets in his willy, & when he gets it he has to go straight away. He doesn't wee very much during the day but he is up & down all night. His tummy has been a bit swollen but he managed to get his jeans on & done up today so it appears to be going down. I was a bit worried that he might have a blockage somewhere because nothing went into his colostomy bag all the time he was in hospital, but on Friday he had to empty it 5 times which has never happened before, & it seems to be ok now. He has never been one to express his feelings so I can only imagine what is going through his mind at the moment, I know he never wanted to have chemo ever again after having it in the beginning with his original bowel cancer, but I've told him we need to talk it all through with the chemo specialist when we get our appointment through. I've got to go back to work tomorrow & I'm not looking forward to it. My daughter, Sara, who Martin took on as his own when she was 4 will be here to look after him. She is now 18. His daughter Kelly, also 18, is going to pop round as well. As I'm typing this he is fast asleep in his chair, bless him. Lets see if we get a letter tomorrow with our chemo consultant appt....

I'm Scared

2009-08-09T22:03:25Z

Been to see my hubby Martin in hospital today. He had his op on Thursday, he is feeling sick & very tired, totally different to usual. After all his previous ops he has bounced back & by day 3 he is frothing at the mouth to get them to discharge him. He isn't one to moan, he doesn't like to bother or worry anyone, so I know he is def feeling poorly - this time they didn't actually remove the tumour, they've said it's inoperable this time, too dangerous, now we've got to wait for an appointment with the oncologist to discuss chemo. I've asked if we can see a doctor to discuss what they found when they opened him up in a bit more detail, I got a 5min telecon with the surgeon on Thursday straight after the op, & Martin has had a total of 5 mins with the surgeon & various members of his team each morning since Thursday. I was sure the surgeon told me that as it was it was inoperable but if he has chemo & they can shrink it, he would have another go, but they've told Martin that there will be no further operations & chemo is the only option. What does inoperable actually mean? Let's see if we can actually get to speak to someone tomorrow...