jenham's blog

Fed up and scared

2011-07-25T10:59:21Z

I have a huge, mega phobia about anything to do with hospitals. I have surprised myself by having surgery, 30 goes of chemo and a port a cath fitted. The surgery worked, none of the chemos (4 different drugs) worked so my stage 4 cancer is progressing. My port a cath didn't work either so I have depended on one little vein which has now given up. After a traumatic digging around I couldn't have my treatment last week so they tried to put a PICC line in but I was so terrified I couldn't stop shaking so they didn't do it but just made a big black briuse to match the other arm. I tried treatment again today but no good, just replaced the fading bruise with a big purple lump.

Now they are suggesting that I have a general anasthetic, remove the port and put in a Picc. Trouble is I found having the GA so traumatic before, the anesthetist was horrible and the surgeon had a row with him and apologised to me for his behaviour but it still feels bad.

I have tried very hard over the last 2 and half years coping with stage 4 cancer (bowel with liver and lung mets), coping with my absolute terror so my quality of life has been eroded somewhat. I find myself wondering whether it is worth putting myself thru any more treatment which is only palliative (should it work). Trouble is it is hard to give up on your liife.

Thanks for reading, any sympathy gratefully received.

Love to all you brave people out there Jen XX

Help with breathlessness.

2011-04-05T11:34:50Z

I have secondary lung cancer (primary bowel) and am finding that I am getting quite breathless doing ordinary stuff. I've got inhalers from the GP but I'm not sure they help. Anyone goty any tips?

Thanks, love to all Jen XX

Feeling sad- what to do?

2010-11-17T15:04:35Z

My chemo failed again, I've had 4 different drugs and no shrinkage to my lung mets. I had v successful surgery on my liver and bowel 18 months ago but the lung mets are increasing. My oncologist has said- v nicely- that I shouldn't bother with any more drugs and should try to enjoy my life. That's a tall order with this hanging over me but I am trying. I just can't get my head around the fact that I won't be here. I am 63 but young at heart and have not had any illness , even having chemo for 15 months has bounced off me. I've just retired and I wanted to enjoy some time with my very loving and supportive husband and this is what is really making me sad. He will have to be on his own - we are soulmates and best friends- and I won't be able to look after him when he is old. It is just not fair but I really don't know how to be, it seems unbearable sometimes.

I know there are people who are less fortunate than I am, some of the young people on this site or those with young children are so brave but I just can't do it right now.

Love to all who are struggling with this terrible disease.

Jen XX

onco's phone call

2010-11-09T11:29:26Z

Just wanted to point out that in my blog yesterday when I said my onco had phoned me to say the chemo had failed it was because I had asked him to. Some of you were a bit surprised that bad news was given this way but it meant that I only had to wait over the weekend to get results instead of a week when I have my appointment. I know no one know s who he is but I don't want anyone to think he is insensitive.

Love Jen XX

Chemo failed again.

2010-11-08T09:02:27Z

Just had a call from my oncologist to say that the chemo has done nothing. I had tumours removed from bowel and liver 18 months ago but had some spread to my lungs. I had chemo before and after surgery which shrunk nothing, a further 3 months of a different drug which resulted in growth, a further 3 months which made me lose my hair but no shrinkage. I will go to see him on Thursday but he says it looks as if we should just monitor it. There may be options but he says after 4 drugs failing we need to think if it is worth it. I find the hospital treatment very difficult as I am phobic about hospitals. They have made special efforts to accomodate me but I still have big problems with it.

I have not had a day's illness since my diagnosis 2 year's ago, not even a cold and I worked through a lot of the chemo. I have just decorated the living room and hall and I don't feel or look ill at all. I haven't even lost an ounce of weight even after 28 doses of chemo.

I just can't take it in that this disease will kill me, it may be later rather than sooner but I want another 20 years not 2. I am 63.

Thanks for reading, and best wishes and better results to anybody who is waiting for results.

Love Jen XX

Does stop mean stop.........or just carry on?

2010-09-14T16:30:49Z

Hi All,

Don't often blog as I am miserable most of the time- just really hate the treatment but today I am feeling very cross. I went having decided to give up on the portacath which is excruciatingly painful and doesn't do blood anyway and to have a cannula in my arm. That was OK but they couldn't get any blood. They do the blood test before chemo and I wait about 20mins for the OK to do chemo. The nurse said she would bring another nurse who I just don't like, I said please try again but the other nurse came and had a go. She was doing something I really don't like and which makes me feel very sick (that tapping on the vein thing) so I asked her to stop as I know only one vein works anyway. she didn't stop so I asked again, she said no, I have to do it, my husband asked her to stop and she still didn't. I was upset then and shouted "Get off me". Then she said I can't treat you and walked out of my room.The other nurse didn't know what to do so I asked for the ward manager to come and I was left waiting for 25mins. I rang my consultant and he rang the chemo unit and then a doc came and redid the cannula (in my one vein) and it got done. The ward manager listened and sympathised but I did emphasise that I was complaining about the nurses attitude.

What a palaver you might think but I am a known hospital phobic and usually my treatment is done with kid gloves so I am used to getting my own way if you want to look at it like that but I just feel it is treatment which is appropriate to my needs. Today was a nightmare and has not helped my phobia.

My question is does stop mean stop? Or can they just do what they want?

Sorry to rant and thanks for reading.

Jen XX

Fed up about chemo failure

2010-07-06T20:46:10Z

Hi everybody,

My 2nd line chemo has failed to work and my lung mets have grown. I feel like I've wasted 3 months on this horrible chemo with a painful port. I also feel I wasted the 3 months before that doing "wait and see". The previous chemo didn't shrink anything either so "wait and see" was to discover if the lung mets really are cancer although I had been told they were. I can go on to a new chemo, probably Folfox. but I'm beginning to wonder if any chemo is going to work for me. My liver and bowel surgery has been very sucessful, but I need some encouragement to carry on right now.

Love and strength to all aho are fighting this disguting disease.

Jen XX

port versus hickman line or picc

2010-06-16T12:43:44Z

I have a port a cath which is so painful to use I can't go on with it. I refused a hickman line as I didn't want the tubes hanging out but I wonder if that would be better for me. I don't think I could do PICC as I have to be put out for any procedues and I read that this is done awake. Any info greatly received. Thanks Jen XX

Port a cath didn't work again!!

2010-05-11T15:48:59Z

Hi everybody,

I had my chemo no. 5 today and it is the 3rd time I have used the port. It is still very painful to use (even the nurse cried today because she saw how much it hurt) and as usual it would not give them any blood. They said I should have a lineogram (x ray) to check why it doesn't. I am allergic to the contrast they use for ct scans so they said I can't have the x ray as they use the same stuff. Now the nurse is saying that she can't use the port without checking it with an x ray. So what do I do? I only had the port put in because the onc said my veins are too difficult to access and anyway would not hold up through the chemo regime.Now it looks as if I should have it out!! I'm fed up with it all. If anyone has any experience of these things please tell me about it.

Thanks Jen XX

Does anybody know about RFA and ports?

2010-03-30T19:03:25Z

Hi everybody,

Does anyone know whether a port a cath has to be removed before RFA can be done on the lungs? I've asked at the hospital but the surgeon doesn't know and the onco is away

Any info will be appreciated.

Jen

Port a cath questions

2010-03-21T17:43:59Z

Hi Everybody,

I have (had) bowel cancer with liver and lung mets. I had a combined liver and bowel op last year. now I am trying to deal with the lung mets which didn't go with the chemo. I'm having a different chemo and the onc suggested a port a cath as my veins never were good and are quite bad now.

I hate hospitals so much that they have to be warned that I am coming and shut all the doors and get things ready so I don't see any unecessary "hospital things" and I don't have to wait.

I have been told the port will be easier for me but I just can't get my head around having a plastic tube in my chest. It makes me feel angry, almost violated and physically sick. That's all part of my phobia but it is real to me.

They do have to put a needle into your skin anyway don't they? Before I had mostly oral chemo and only 4 infusions but thay took their toll on me, much more than the drugs did.

i will try to ask the onco on Monday about alternatives but he is not easy to catch! I've been up nearly all night ,just so worried about this.

Any experiences will be welcomed.Thanks

Jen

lung mets

2009-12-27T18:25:53Z

Has anyone had treatment for lung secondaries? I've had successful treatment (surgery) for bowel cancer and liver mets but the chemo seems to have been ineffective on the lung mets. Oncologist wants to wait 3 months to see what happens but I am already worrying about what happens next in the way of treatment as I am scared. Would appreciate any answers. Thanks

2 ops in one

2009-05-27T10:18:33Z

I just had a bowel resection and a liver resection done together. I was originally told this was unusual but could be posssible and I am so glad it was possible for me. I just wonder if anyone else has had this done together or how unusual it is. I don't have a problem just curious. Jen XX

Which chemo for bowel cancer?

2009-03-31T19:40:35Z

Most people with bowel cancer seem to be having xeloda and capecitabine. I've just had 4 cycles of that which did not work very well and I guess I will be given a different regime. Does anyone have experience of anything else and can tell me about it? i know everyone's experiences of chemo are different but any info would be good.

Time between chemo and surgery?

2009-02-14T15:41:21Z

Hi, does anyone know how long after chemo surgery can happen? I really need to know as I am working all through the chemo but when it finishes I am due a scan and then bowel surgery. I am trying to organise not only my work but maybe a little holiday and my life generally. Any info gratefully received. Thanks Jen X