Living day by day

[jomaspirit]

8 weeks ago i was told my mum was ill and it was plurisy. She was chesty and had symptoms of a cold. She was given antibiotics. A few days later rushed into hospital and told it was pneumonia. By the was she was 66. Then after being rushed in to hospital again the result was she had a bad reaction to the antibiotics so they changed them and sent her home. A few days later she became paralyzed from the waist down. Rushed in again to be told she had lung cancer. She was sent for an mri and after numerous doctors rushing in they sent her for emergency surgery. She had a tumour on her spine. They removed fluid from her spine but then decided after her recovery it was inoperable. She was given two months to live. My family live in England and im in Australia. I got on a flight and mum died within a week. That was three weeks ago. Now today im told my dad has lung cancer. Im numb. He has to have a scan asap so will be in a few days. Im back in oz and beside myself worrying about him and my two sisters.

[Esme85]

Hi jomaspirit,

I am so sorry to read about your parents. It is shocking to read how suddenly everything happened and is happening, never mind to be going through it personally and being on the other side of the world - no wonder you are feeling numb.

I am fairly new to this forum (and to lung cancer - my mum was diagnosed in June) but everybody has offered support, including Roy Castle who have a nurse-led helpline and lots of information online.

How has your dad's lung cancer been diagnosed?

Not everybody is as acutely ill as your mum tragically was before they are diagnosed - I wondered whether learning more about the steps between diagnosis and treatment options / what to expect next with your dad might help with how you are feeling? It helped me a bit, knowing what would come next and trying to feel like there was a bit of a plan in place.

I know it's a not much, but know my thoughts are with you and your family.

Esme

[jomaspirit in reply to Esme85]

Thankyou. Your so kind. Dad had a chest xray. Now the doctor rang the hospital there and then to get dad in for a ct scan. No success of a last minute booking. The hospital are going to ring dad. So im hoping monday i will have more news.

[JanetteR57]

Sorry to read of your shocking news and how devastating about your dad. As Esme has said, not everybody deteriorates so rapidly. I was told just a month after my 52nd birthday that I had suspected lung cancer and had surgery to remove half my lung and received the diagnosis afterwards to confirm it was indeed malignant lung cancer. That was in January 2011. I started recovering and in that period, a dear friend who was having lots of severe shoulder/back pain and no response to meds/physio etc deteriorated rapidly and like your mum rapidly went down hill having gone to hospital for a scan that he'd decided to pay privately for (fed up of waiting for the NHS), he was in hospital 10 days and died within 3 days of diagnosis. That spurred me on to learn more about the condition and raise research funds in his memory for Roy Castle charity. I've gone on to use my own experience for good to learn and inform researchers/scientists/clinicians what it's like for the patient/carers to experience and highlight what matters to patients during their 'care pathway'. It has been humbling and inspiring to meet patients who sadly are no longer with us but also meet others who through new treatments and taking part in trials are still here years after being told they had months to live. I've also met several who have survived 20+ years since their diagnosis. Please share your fears and concerns on this forum and we will look to support you as best we can by offering hope, listening or sharing experiences to help you through this difficult time. Words can seem so inadequate at such difficult times but hopefully the fact that others understand what you're going through may help you. Do you have access to any helpline in Australia? Macmillan and RCLCF have nurse led helplines for access by not just patients and carers. If your dad has a Cancer Nurse Specialist assigned to him, they can also offer support to family members. You'll need somewhere to explore your fears and concerns without necessarily sharing them with your dad as he will have his own anxieties to have appeased without feeling guilty that the rest of the family are suffering at the same time. Perhaps you and your sisters could support one another in this family crisis and work out how best to support your dad? There have been many advances in treatment, diagnosis and options so all I can say is don't give up. Your dad will need you all to be there for him. Thinking of you all…. best wishes.

[jomaspirit in reply to JanetteR57]

Thankyou so much. Its very hard to get the support from my end. I only got access to macmillan because I came to England. Lucky for me. I will be speaking to my doctor soon as they have done lots of tests on myself too. It could be genetic because there are more than two with the same cancer on one side of the family. Six in fact on mums side and now my dad which im thinking now has raised that concern in my head. Me and my sisters worked really well as a team during mums small journey. I just cant believe its happening. Im secretly mad with the world and what cancer is doing to us. Its not fair. Its been so long that research has been taking place with so much being donated and i feel like we are getting no success.

Dad has already said he wont be going through any treatment or surgery. He is stubborn just like my mum was x

[Brogan-12 in reply to jomaspirit]

Hi sorry about your circumstances. I lost my patner in March. To this awfull disease. I agree not enuff reasearch being done god bless you and your family xx

[JanetteR57]

Sorry to read that, it must be so disheartening. Very little lung cancer has been found to be genetic to date (unlike breast, bowel and other cancers). However often members of the same family will have followed similar lifestyles or been exposed to the same risks (e.g. radon gas or similar).

Your anger is normal - it's a natural part of the grief cycle (Elizabeth Kubler Ross) that moves around anger and denial in no particular order before moving onto acceptance.

It's a pity your dad doesn't want treatment as there are new developments being made all the time and many patients are now alive (many contribute to this forum) due to the newly developed ideas and treatments - some on clinical trials and some on treatments that were part of trials but have now moved into mainstream treatment for LC.

I hope you and your sisters can continue to work as a team - last year my dad was in hospital and had major surgery (the 3rd time he has had bowel cancer - the other two occasions were when he was in his 50s, he's now 87) and my eldest sister and I grew closer through having to juggle responsibility for my mum (who has Alzheimer's) as usually my dad 'cares' for her at home and she's totally dependent on him.

Lung cancer was not heavily researched until a few years ago - when my friend died suddenly I was shocked and angry that less than 5% of all cancer research was spent on lung cancer despite it being the biggest cancer killer of both sexes. Since then, major investments have been made by cancer research charities, new drugs developed by pharmaceutical companies, new surgical techniques developed including robotic and video assisted thoracic surgery (keyhole) and less invasive radiotherapy (SABR). However studies/trials can take years and often patients do not survive long enough in high enough numbers for comparison as with other cancers (skin, leukaemia, breast, prostrate where patients can survive decades) so the size of the studies have often been limited in the past. New study designs, new advances in surgery, radiotherapy, chemotherapy and immunotherapy are all leading to new learning but one thing is clear from all the research so far is that lung cancer is far more complex than originally thought. There are different types, affecting people differently and with different development patterns. Now more is known about biomarkers, tumour mutations so targeted therapies have been developed for some of these - these are having some effect in holding the condition enabling it to be treated as a 'chronic' disease for some as a result.

I understand your dad's response about treatment - but until I became personally involved, I had no idea of what treatments were available and now that's increased several fold. Many clinicians are also not always up to date especially family doctors/GPs. He also may want to 'join' your mum in his grief for losing her which may well be impacting his thoughts and decisions at the moment.

Wishing you luck and hope you can find some way for you and your sisters to support you and your dad.

[jomaspirit in reply to JanetteR57]

Thank you for your input. Its not so much the lung cancer thats genetic i think its the metastatic tumour wrapped around the spine that mum and her twin brother had.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear jomaspirit

So very sorry to hear about your Mum's loss and journey with lung cancer and your Dad being recently diagnosed. It is understandable that you can imagine it will be the same situation, but the reality is it may be very different. There has been excellent responses from both Esme85 and janetteR57, of which there is not much I can add to.

However , I have placed some links for support for you in Australia:

lungcancernetwork.com.au/ - 1800 654 301

This second link enables you to search specifically in your territory, for cancer support/information

canceraustralia.gov.au/affe...

The lung cancer network and lung cancer and lung foundation in Australia have the same helpline number, this is the link for the lung foundation one : lungfoundation.com.au/

There is also the cancer council Australia helpline number on 13 11 20

cancer.org.au/about-cancer/...

This link provides health information on lung cancer and provides some useful links

healthdirect.gov.au/lung-ca...

Although you are in Australia , you are very welcome to call us on our nurse led helpline if you wish to discuss anything on [phone]

All the best

The Roy Castle Support Team

[jomaspirit in reply to RoyCastleHelpline]

This means so much thank you xx

[Jmc8]

Hi just wanted to send my sympathy & say you are not alone. I lost my dad at the end of Feb after 18 years battling a rare form of blood cancer. My poor mum felt out of sorts about a month after dad passed away. Similar to your situation she was misdiagnosed, & eventually told it was cancer & passed away within a week at the end of May - I'm slowly getting over the shock of it. I was diagnosed with early stage lung cancer 3 years ago - found on a chest X-ray & operated on so please don't assume that lung cancer always means no hope. There will be hard days ahead no doubt but at least you have the support of your sisters. Take care x