Search found 23 matches

by toodotty
Sat Jul 14, 2018 5:33 pm
Forum: Family, friends and carers
Topic: pnet husband having surgery soon
Replies: 6
Views: 1283

Re: pnet husband having surgery soon

Hi Tessa48, Thank you for sharing with us and I am delighted with your news. It is really important that we have positive news here as well to give others and us HOPE. Now get out and start doing some of those things you were putting off. Instead of waiting until your husband is 50 to have that part...
by toodotty
Sat Jul 14, 2018 5:27 pm
Forum: Advanced pancreatic cancer
Topic: Diagnosed too late for treatment
Replies: 8
Views: 779

Re: Diagnosed too late for treatment

Kimmac, Make sure you apply for a PIP allowance (like attendance allowance) and a Blue Badge. You husband will be entitled to both and it will help pay if you need extra caring support, though much is provided free. These take a bit of time to get moving but with S4 PC you should get the full allowa...
by toodotty
Sat Jul 14, 2018 5:10 pm
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 25
Views: 2050

Re: Battling to get treament

Hi again all, Sorry if I seem to be repeating myself and not replying but the forum is a bit reluctant to update itself and I have just picked through a whole raft of replies that I haven't seen before. Firstly, what I am going to exercise to now that the footie is over. 45 mins = 10 miles, I will n...
by toodotty
Sat Jul 14, 2018 4:28 pm
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 25
Views: 2050

Re: Battling to get treament

Round 5 Folfirinox, Saw Dr Doom last Thursday and for once he seemed a bit more upbeat. The bilirubin levels have now dropped down from 39 to 20 in two weeks, probably the 6 pints of squash I am forcing down me everyday, and I am feeling so much better. Round 4 Folfirinox had killed off the pain so ...
by toodotty
Sat Jul 14, 2018 4:03 pm
Forum: Patient Experience Forum
Topic: First folfirinox experience
Replies: 9
Views: 409

Re: First folfirinox experience

Hi Kate2101, Great news that you have had your first treatment and it went well. It is worth noting down your symptoms because you will see a pattern developing and will get into a groove quite quickly. I too threw up my anti-vomiting pill, amazed that something so tiny could make me chuck up so qui...
by toodotty
Thu Jul 12, 2018 6:24 pm
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 25
Views: 2050

Re: Battling to get treament

Hi All, Saw my lovely GP this week who was delighted at how well I was looking. Since being diagnosed with PC she has been an absolute stalwart for me and this week admitted to being totally horrified at how badly PC sufferers are treated. She admitted that her other PC patients were elderly and had...
by toodotty
Wed Jul 11, 2018 4:19 pm
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 25
Views: 2050

Re: Battling to get treament

Hi All, Met with my lovely GP yesterday who is constantly uplifting. I have talked to her about Nanoknife and Heidelberg and she is prepared to put a case forward to her PCT to see if there is some funding available. She has also said that I am the first "younger" PC patient that she has had to deal...
by toodotty
Wed Jul 11, 2018 4:06 pm
Forum: Advanced pancreatic cancer
Topic: Diagnosed too late for treatment
Replies: 8
Views: 779

Re: Diagnosed too late for treatment

Hi kimmac, I am so sorry to hear your terrible news. I too was diagnosed with S4 PC at the beginning of April, and I had to battle and complain and write letters to finally get treatment. Like your husband I deteriorated really quickly, by the time I got my chemo (it was brought forward by 2 weeks),...
by toodotty
Tue Jul 03, 2018 5:20 pm
Forum: Family, friends and carers
Topic: My Mum's PC Diagnosis
Replies: 9
Views: 706

Re: My Mum's PC Diagnosis

Hi HT, I haven't had time to post directly to you, but felt I needed to. I am right there with your mum, you do need to also have a life. The diagnosis is terrible, but she is young and given the shocking wait for treatment and the attitude of the Oncologists, it is no wonder that the UK has the wor...
by toodotty
Mon Jul 02, 2018 10:09 pm
Forum: Family, friends and carers
Topic: Mum Diagnosis
Replies: 13
Views: 1327

Re: Mum Diagnosis

Hi Margie and HT959, Unfortunately, your experience is not isolated, you may have seen my post about Battling to get treatment. I believe that if I had not complained both to my MP and to the Chief Executive of the trust treating me, then I would probably not be alive now. It is hard enough to have ...
by toodotty
Mon Jul 02, 2018 9:55 pm
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 25
Views: 2050

Re: Battling to get treament

Hi Jeni and Kate2101, Absolutely, no point in mooching around feeling miserable. Making the most of the time, could be run over by a bus tomorrow, there is no certainty in life. Was a bit worried I might be arrested on the suspicion of shoplifting today, as I was the only person in the shop in bobbl...
by toodotty
Mon Jul 02, 2018 9:42 pm
Forum: Patient Experience Forum
Topic: Wrong diagnosis?
Replies: 1
Views: 313

Re: Wrong diagnosis?

Hi Michaela1, I am really sorry to hear your news, and the terror and sadness that this will be having on both you and your family. Sadly, if they suspect pancreatic cancer because of the CT scan, they are will be reasonably confident in their diagnosis. Unfortunately the UK has a very risk adverse ...
by toodotty
Sat Jun 30, 2018 9:29 pm
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 25
Views: 2050

Re: Battling to get treament

Hi Kate2101, Unfortunately everyone who knows you will be devastated and find it difficult to cope. Some of my friends have admitting to crying continually, it even has taken one 2 months to ring me because she was afraid she would break down on the phone. I made her come and visit me today, we had ...
by toodotty
Fri Jun 29, 2018 10:58 pm
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 25
Views: 2050

Re: Battling to get treament

Hi Kate2101, I am so sorry to hear about your diagnosis, and feel both for you and your family. I must admit that I have not yet told my sons the seriousness of the situation, I believe that there is plenty of time to mourn and it is not now. I am trying to get everyone to carry on with their lives ...
by toodotty
Thu Jun 28, 2018 8:08 pm
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 25
Views: 2050

Re: Battling to get treament

Hi everyone, I have had a really good week this week, treatment is clearly making a big difference to me. I have gained 2kg in weight this week, and completed 35 miles on my exercise bike in 5 days, doing 10 miles yesterday and today. Went in to see Oncologist today, feeling very positive but Dr Doo...

Go to advanced search