Advanced Cancer Patient ----- > Juliana

[Juliana]

Hi Clair,

thanks for the info.

Considering Swansea is rated quite high in the treatment of Pancreatic Cancer....to think, it's been 2 yrs and 4 months since my Whipples Op and only now they have put a dietician on my case. Not only that, they have watched me lose all my weight over the past 4 months....and not once suggested it may be cachexia (not to my face anyway) - and I was so wrapped up thinking it was my guts/stomach not functioning properly that I didn't think of any other reason.

I just feel so let down. Yet they think they have done everything to help me survive....but if they were to see it from this side of the table, I wonder if they would be as confident in their service to me.

I am now left so weak, a trip to the loo is an effort - trying to embark on a regime of pro-sure, something I've had to ask for.....unbelievable.

Juliana

[jordan]

Hi juliana

I live in carmarthenshire (not far from swansea) We also had a similar experience as you, when my mum was ill last year we had to push and ask for everything we needed for my mam including appointments to find out what was going on!After joining this site i have learnt so much from you all, I wish i would have known when mam was here to try to help her more.

Sending you hugs and strength

jordan x x x

[taylogrd]

Hi Juliana,

I've been reading your posts and am so sorry that you are still finding it hard to maintain your weight and strength although I see you remain an inspiration as you still are able to find time to write with support and encouragement for others. You can see by the number of replies and readers you get that your voice and opinion is not only valued by me but many others as well. I hope that our collective good will thoughts and wishes send you strength and renewed resolve to face life in crap cancer world.

You mentioned you were interested in the chemosensitivity test Dr. Hembry told me that she had a contact at our hospital they did the the test at our unit and sent it direct to Greece (give Dr. Hembry a ring). The test advises on the best chemo. as well as suitable alternative treatments which would be helpful for you as they are still willing to offer you chemo.; believe they claim a 70% success rate for the test results.I paid 1300Euros plus a £25 phlebotomy fee and I'll keep you informed on what happens with me. I'm not to sure about the German stuff though seems a bit cutting edge, only recently tested on mice, who would treat any side effects that might develop? Although that trial order might considered by some as OK first mice then men, rats, monkeys and ladies last? Or was it ladies first? OOH I'm making meself nervous now.

I know what you mean by the quality of care our local Hospital gives now. I phoned the hospital last week with breathing problems/suspect chest infection and loss of appetite they told me to go and see my GP!

Good job I persisted with the receptionist and eventually got to see a standin Dr. who gave me a thorough examination she even pulled up my trousers to measure my legs, harrassment sprung to mind but not for long. The Doc perscribed anti-biotics for the chest infection, Nystatin and corsodyl for the mouth and throat infection and placed my record on the 24hr help line to aid speedy service next time. I'm feeling fine now and eating better as well.

Thoughts, hopes and prayers that things start to go better for you.

Gordon.

[clair2305]

Hi Juliana

how are you? I did type a nice informative message to you about cachexia and my internet crashed, so I will start again and before I do I'm not trying to teach you to suck eggsand I know not everyone is the same.

But, Blue lost about 4 stone and was put on steroids (4mg dexamethasone daily), these were gradually reduced over a 4 month period and in that time he had put back on almost 4 stone. He also had Calogen extra and Fortisip drinks.

He took part in research (only involvement was taking blood) at xx where they are looking at cancer and weight lostt (cachexia). The doctor conducting this research was Dr xx and I suspect he probably has some results now.

Also, as I already said, Blue's dietician is great and she gave us the following information leaflets which did help as it happens, sometimes a little of the right food is better than lots of food and I think it also taught me sometimes the little things help, like real butter and snack size Twix.

http://www.cuh.org.uk/resources/pdf/patient_information_leaflets/PIN1477_how_to_fortify_food.pdf

http://www.cuh.org.uk/resources/pdf/patient_information_leaflets/PIN1481_poor_appetite_and_weight_loss.pdf

Catch up again soon but gotta take Blue to see palliative care doctor again today.

Love

Clair

[Juliana]

Hi Clair,

Thanks for the info.

Apart from recently, the only contact with a dietician throughout my cancer battle was at the hospital just after my op. Where she advised me to eat as much junk food as I could to put my weight back on quickly.

That was the only advice I was ever given. After my op, I did put the weight back on, but my weight loss was not due to the cancer as such, it was due to my pancreas not making the digestive enzymes, so once that was sorted with Creon the weight returned and I went back to normal.

This cachexia is a totally different situation.

The depression associated with it is crippling. I have been prescribed anti-d's, but only 10mg a day - not sure whether I should ask for more as it's only been a week on them. I am also acutely aware of how scared I am with regards taking on the trial. I havent been to the meeting yet, but my imagination is running wild, and I fear I will fall at the first hurdle. I tried to explain to my hubby lastnight how I felt....frightend, cowardly and desperately sad. Being in the house fills me with sadness, I am surrounded by all I have strived for - yet no longer feel part of it, or able to enjoy it. I love my children so much, yet get agitated and stressed when they are around me. And my poor hubby.....totally neglected, I just can't show him how much I love him....and I want to be left alone.

Everyone tells me how I should 'enjoy the time you have left'.....but it seems a contradiction of terms.

I so want to live, but I fear that I just can't deal with what is required to get there (needles/prodding/illness etc)....which then makes me feel like a coward and that I obviously don't want to live as much as I think I do.

It's a vicious circle.

Juliana

[scp38]

x

Edited August 9, 2010 by scp38

[clair2305]

Juliana

I do hope the info helps, even though your cachexia it not so much cancer related, even if it helps a little.

As for the anti-depressants, yes they may take time to kick in, but in all honesty you are not depressed for no reason are you? You are a fighter, your posts on here certainly tell us that. As for your children, well we all get fed of them at times don't we and speaking from my own experience, I'm sure your husband feels all the emotions you are, I can certainly say that I feel helpless, angry, sad, even lonely at times, I love Blue with all my heart and more and it tears me apart to see him in pain and sad, knowing I cannot do anything. I can rattle off his medication without even looking and probably recite side effects of tablets in my sleep, but obviously I'd give all that up to have a different situation.

Your emotions are all normal for the experience you are going through.

When is your appointment about the trial? Is there anyway it could be brought forward? Or do you even have some literature on it you can read and possibly prepare some questions (write them in a book instead of trying to remember them all in your head).

Regarding the dietician, do you have a community Mac nurse, normally located at the local hospice? Have you used their services? As I am sure they will have a dietician who could see you to make some attempt at increasing your weight, albeit with different enzymes, steroids or other methods. I hope I am not being insensitive but if you didn't have PC and was as underweight and weak as you decribe you would surely feel many of the emotions and physical pain you probably feel now and the medical profession would have to help you. And they should still help you now. Palliative care is based on relieving pain and other symptoms and giving the best quality of life as well as providing support for you and your family. Not sure if your mum is still with you at the moment....maybe get her to give them a buzz.

Ah yes 'enjoy the time you have left'.....as Blue's wife that raisese a lot of questions for me as I'm sure it does you and your husband and it's amazing how loud that clock ticks in my head....I also think it's one of those things people say when they don't know what else to say.

Take care, I'm thinking of you

Clair