How to Help your Mum Survive Pancreatic Cancer or Not

Some news

2010-04-18T09:45:20Z

I have not written on here for a while as we have just been getting on with things. My mum is surviving on chemo, she is ill for about 3 days a week and very tired the rest of the time. It is unfortunate that the majority of times people write on here it will be bad news or at least when I am feeling upset.

This week the news has felt a little strange. Mummy and Daddy went to see the oncologist for the results of a CT scan and the general consensus was "It's under control". This means that the primary pancreatic tumour has remained the same size (no growth) and the secondaries in her lungs have diminished slightly (although this is hard to read on the CT scan) . This is good news for most Pancreatic Cancer sufferers - in more then 50% the tumour keeps growing. I should have been happy but I wasn't. In some ways I had fooled myself into believing some miracle would happen and the results brought me back to reality.

So the plan now... she will be on chemo another 3 months and then they will see what happens from there. I wish the Chemo didn't take such a toll on her, She seems very dejected at the moment and yesterday told me she felt like a ghost. I think sometimes she questions whether the chemo is worth it. Of course I think it is and refuse to let her give up ( I don't know how selfish i am being)... I feel like we are so early in the treatment and you never know what will happen.

Am running for Pancreatic Cancer UK

2010-02-23T17:21:26Z

Decided today that I am going to do a 10K run for Pancreatic Cancer UK. Am not very sporty but hopefully I shall push myself to train for it. The run is on 31st of May! eek!

Please Donate at https://www.justgiving.com/natashalyons

Chemotherapy and a new trial

2010-02-16T10:58:57Z

On friday mummy went to sign up for a trial that her new oncologist suggested. He sounds like a very encouraging doctor and I have noticed a more positive attitude in her since she started treatment with him. In there first meeting he did not give a prognosis like the other oncologist and really stressed how different every patients case was; he even cited an example of one of his patients living for ten years after an incurable diagnosis.

I am really happy that she has decided to do the trial and luckily she was given the group that I was really hoping for. She will now have a vaccine along side the chemo. I have done a bit of research and it is called immunotherapy, designed to teach mummy's immune system to recognise certain proteins the cancer makes, hopefully helping her own system kill some of the cancerous cells.

Yesterday was the beginning of Mummy's first chemotherapy cycle. She has to go every monday to have an IV of one type and with another she takes pills every morning and evening. It is these pills that makes her feel ill and already you can see she is more tired and gets really shivery.

I realised this morning that this battle is not only going to be about keeping mummy with us for as long as possible, but also about her quality of life. For now I feel relieved that she is having the best treatment possible. Sometimes my mind wonders to thoughts of a few months time but I stop myself and remember that today we are all together and that is all I can ask for.

Poor mummy

2010-02-01T12:00:15Z

I thought I would not write again until my mums first chemo session but when I sat down at my computer today I was compelled.

Since she had the 'small operation' on friday to put in the stent, she has been in such agony which i find horrifying to see. Yesterday she was ok most of the day but in the evening had a period of horrendous pain. ... apparently the doctors found the operation a little tricky and had to fiddle around a lot. With her lung biopsy and this operation she is finding it very difficult to be comfortable.

This morning when everyone else went into work I went to sleep in her bedroom. In every breath she took you could hear her agony and she was sick numerous times. I don't think i have ever felt so useless.

In my head I know that she will get over these operations and be strong again, yet because of her diagnosis any bit of pain she undergoes possesses a deeper poignancy.

Maggie's Centre

2010-01-28T14:26:27Z

Today I went to the Maggie's centre in Charring Cross Hospital. As a previous architect student I had been intrigued about the place since it won the stirling prize last year - strange to think I was there for this reason. It was a really beautiful space; flexible and open plan, full off adaptable spaces.

I went prepared with a geeky list of questions as i thought i might become tongue tied. This Lady called Bernie talked to me for a while and I have to admit I welled up a little bit at the sound of my own voice saying what had happened. She answered all my practical questions about chemotherapy and how best to emotionally support my mum. I took a stack of leaflets: Pancreatic Cancer; How to care for someone with terminal Cancer etc. I also rented a book entitled 'How can I Help?', which has loads of practical things that might be helpful.

I'm off now with my mum to get her stitches out from her lung biopsy. I think I shall write next once she has undergone her first Chemo session. I'm hoping that she will not have too many side effects.

The first oncologist appointment

2010-01-28T11:09:44Z

This morning my parents visited an oncologist who suggested a plan of how to proceed. On friday she will have a minor operation to place a stent that will stop her from becoming jaundice. After resting for a week she will begin a course of chemotherapy which will consist of 3 mondays of treatment and then a week off, repeated for three months.

This chemo wont be too aggressive so she shouldn't lose any hair or anything like that. From what I have read it seems that everyone reacts differently to the treatment, some people feel very sick and nauseous for a length of time, whilst others need to rest for an afternoon and then can be active for the rest of the week.

The oncologist pointed out that mummy has not had any of the main symptoms - such as becoming jaundice. This might suggest that her specific cancer is not particularly aggressive, buying more time.

Personally, I have decided not to dwell too much on statistics. It seems to me that there are plenty of people that have survived a long time. I shall try my best to not think too far into the future and take it day by day.

My priorities at the moment are to make sure that my mum does not feel lonely or bored at all and to be as helpful as possible to my father. He is working very hard trying to sort out his office in order to have more time off and seems very drained. They are both determined to be very strong for me and my sisters, yet in reality they are the ones that need the most support.

A week after diagnosis

2010-01-27T11:45:54Z

On friday the 19th I was told that my mums pancreatic cancer had spread to her lungs and that from now on any care that she received would be palliative.

For a couple of hours I did not react but merely asked questions, " Can they not do chemo?"/ "Cant they cut them out" It took me a great length of time to realise that this was a death sentence for my mother.

I immediately began research online and was greeted with horrid statistics for pancreatic cancer that was operable - let alone for those that spread to the lungs. I read repeatedly 3-6 months.

Last week we went through a period of hope when we were told that perhaps the spots found in her lungs were not cancerous which would mean that the cancer in her pancreas could be operated on. My mum had to have a very painful biopsy where they collapsed one lung and spent 3 days in hospital to discover on friday that they were in fact cancerous. Now she is weak from this operation and Im scared that this may be the beginning of her getting ill. Up until now she has been completely healthy apart from some bowel problems.

I am on a daily cycle of different emotions. I swing from fear and despair to anger over how late this was diagnosed (considering my mum started her search for a diagnosis last march). I generally consider myself a positive person and am trying so hard to be positive as I know that this will keep my mum with us for as long as possible.

The most agonising thing is how slowly the doctors have progressed... we have to wait days for doctors appointments. My mum is getting very frustrated by being at home with not much to do.

My mum is meeting with an oncologist tomorrow morning. I desperately want them to fix a plan so that my mum can go away to the sun for a little bit with my dad and generally plan fun things to do.

I have been reading lots of posts in the forum here and feel quite worried at how quickly the disease has progressed with many on there. I think perhaps last week my body shut down so that I would not be in such emotional pain... I seem to be becoming full of fear and worry today.