Time wasted

[mary]

Hi everyone

Its been a while since I posted but one of my children found this site and I was a bit concerned about them reading my posts, but needs must and I feel as though I need a good rant at the moment. As I explained in my earlier post my husband was diagnosed with Pancreatic cancer with secondary in his liver on the 11th February, when we saw the specialist almost 2 weeks later we were told the prognosis was 3 months without treatment but 2 to 3 years with, he also said he could go on the Telvac trial but would need a PET scan and a biopsy and a visit to the oncologist before that was decided. Over a week later he went in to have these tests done and since then things have gone from bad to worse, he has hardly been able to move with the pain and swelling in his legs caused by the DVT they say. He finally saw the oncologist last week, over 5 weeks since diagnosis and low and behold he is not well enough for the trial. Asking questions was no good, he either changed the subject or at one point left the room for 15 minutes while he went to speak to a haematologist for advise about Fragmin, but we did get an appointment for a pre assessment on Monday for chemo to start on Tuesday.

On Friday we had our first visit by the Macmillan nurse who seemed very surprised that chemo was offererd and has told us to be prepared for them to tell us that this may not now be an option.

What I want to say to everyone is listen to all the advise from people on this site, don't sit back and wait for things to happen, pester everyone if need be, insist on things being done straight away, don't do what I did and trust these people, I have wasted so much time trusting. 6 weeks from diagnosis to treatment should never be allowed no matter how many tests they need to perform.

Mary

[LittleMissOptimistic]

Dear Mary,

I am very sorry you are going through all this, and for everything you write.

I am glad you are back here though, talking helps and your expression to give advice to everyone else is so great of you.

I dont know what to say really, I send you deep warm wishes, and a massive hug, stay strong.

Ella

[lynbo]

Dear Mary,

You sound fed up, rant away..... I agree with your post, not good enough.

Keep calm and push for more xxx

[millyjo]

Dear Mary,

So sorry to hear about your husband, it is devastating news to here any diagnosis and prognosis.

Ranting is just what you need, and I know that no-one on here would criticise you for it, so rant freely.

As you say everyone should get things sorted as soon as possible, and making a noise and pushing for action is a must, as from what I have researched pancreatic cancer is virilant.

I unfortunately encountered it with the loss of my dear mum, so through personal experience know it to be a difficult one to contend with. We as a family from the day Dr said she had to go for a CAT scan and would have to wait 2 weeks for it, funded private CAT, consultations with Professors, specialists, all during one week period of her first visit to Dr. She was slightly jaundice at the time, but we never expected the diagnosis.

She was diagnosed on the 15th April and died on the 3rd of July.

Sorry I don't mean to scare munger, but it is hell of a journey. But hey every day there are advancements in medicine, so who knows.

I suppose what I'm saying is don't question or doubt your support for your husband, as until you encounter this disease, and are reliant on Dr's etc., does it become apparent of their lack of knowledge about it ie., diagnosis.

This type of cancer I feel has to be diagnosed early for successful treatment, and unfortunately symptoms often don't arise until late onset, hence the difficulty for medical bods.

But as I say miracles!!!

I'm no expert, but this site as you say offers so much, information, support and loving care.

God Bless

Millyjo

xx

[millyjo]

Hi Mary,

I've just read my previous post and I feel I've been most unsupportive emotionally, which wasn't my intention.

I care deeply, and my thoughts are with you.

Love

Millyjoxx

[mary]

Thank you so much for your replies, support means so much to me at the moment. I am feeling a little bit more optimistic today, my husband seems to be much better since we got his pain relief sorted, its just one leg now that is still badly swollen but the pain is not as bad, also he had his pre assessment yesterday and will start chemo today. I knew nothing about pancreatic cancer until this happened and cannot believe there is so little research done on this, it must be one of the worst types of cancer to have. As everyone says there is usually no warning until the disease is very advanced, my husbands cancer was found purely by accident (DVT in leg) he had never been ill.

Millijo please dont worry about how your post sounded,I know exactly what yu mean. I am so glad I have found this site, the support I have found on here means much more to me than the so called professionals who are looking after my husband. also Jeni has been such a great help, I email her regularly and she always replies.

Thank you all once again,

Mary

[LittleMissOptimistic]

Dear Mary,

I am very glad to hear you more positive and that you gave us some news.

I'm glad things have got going and I deeply wish all the best.

I volunteered at the Reading Half Marathon last Sunday and met some more people, they are truly wonderful

I definitely feel there is a strong connection between all of us.

Keep us updated or write again whenever you feel like.

Stay strong and positive.

Best

Ella