This weeks blog is from Abi, who is a great friend of mine from the ‘Breast Cancer Community.’ I have watched as the realities of her story have unfolded, and we have exchanged experiences. What concerns me, and is the reason I wanted to share this piece, is to quote Abi, (cancer services) “do not always work in sync and do not offer patients the best chance of survival.” This is something I have been aware of for so long, and talking to several senior clinicians this week is only getting worse! Communications with many organisations involved is poor on the whole, and you can wait weeks even for an email, if you are lucky to get a response at all! In my new role as a charity donor, offering services at no cost, there are organisations that do not even respond when asked if I can help them! It all has a very familiar lethargic feel. As I and many of my peers have found the system is a long way from being as good as it could be and certainly not as joined up either. Below is the reality of what Abi and many others are going through, because the current system is failing them.
“After almost a week in hospital I was released back into the community on Friday. The breathlessness wasn’t subsiding in fact it was getting worse, I knew in my heart of hearts what was happening, I knew the cancer had spread into my lung. 
I had tried to convince myself that it was due to the horrid cold/almost flu like symptoms I’d had for the previous couple of weeks but I when you live with cancer you know your body and I knew that being in denial any longer was futile and that I needed to get it looked at properly and face the truth.
So once installed into a hospital bed tests confirmed my suspicions, my right lung is buggered to put it non too politely. The only treatment option is to try a different chemo – Vinorelbine which hopefully will stop the cancer beast and maybe give me some of my lung function back – keep everything crossed for me. The new chemo starts tomorrow and waiting for this has felt like an eternity, I desperately wanted to start the chemo whilst in hospital last week but due to the logistics of it, it wasn’t possible so I feel like I have been stuck in no man’s land with this ‘thing’ continuing to grow inside me. I haven’t had any chemo for four weeks as a Prof wanted all of the old chemo to be completely out of my system before starting this new one. To add to the change of regime I also have had to take delivery of oxygen supplies. Thankfully I don’t seem to need it as my sats still are good but Prof wanted me to have it just in case which I understand so I have a large oxygen unit in my bedroom and portable canisters in the car.
It has been a difficult mental challenge to accept these changes, up until now I have lived with cancer and had a relatively normal functional life but accepting that things are changing has floored me. I have been living the “positive life” that everyone preaches at me; “come on stay positive, you can beat this, you can do this”, etc but when reality bites and things get worse it is difficult to keep it up! I’m sure once I’m plugged back in to the drugs tomorrow with the scalp cooling cap freezing my head to -6 to save me from losing my hair for a third time I will actually feel better! 
How ironic pumping my body full of toxic poison and giving myself brain freeze are my coping mechanisms, these are the only things I can control, I make the decision to do this to myself, the cancer is relentless and ruthless and does not cut me a break, it leaves me no option but to poison myself in order to live longer! So I am eager to get started tomorrow, I don’t know what/if there will be any side effects but I will just deal with them as they arise as I have done with the previous five chemos they are a small price to pay in exchange for still being here. My aim is to get back to work and be part of ‘normality’ once again.
I am also on the look out for clinical trials, at this moment in time there does not seem to be any suitable ones in th UK to suit my circumstances so I have taken to looking further afield. It’s amazing to learn just how far behind we in the UK are in the development and availability of new research and treatments for cancer. I have always thought we in the UK led the world but the more I investigate, I see our politics, funding restrictions, pharmaceutical companies and charities policies do not always work in sync and do not offer patients the best chance of survival. Only today I read an article by the top man at Pfizer Pharmaceuticals who says he would not want to be a cancer patient in the UK today, not what you want to hear when you are desperately looking to stay alive! So I have taken to looking abroad, I have contacted research centres in the USA, Australia and in Europe, the difficulty with these are the costs but when it comes to my life what am I supposed to do? How much is my life worth? Do I give in when all the treatment options in the UK have been exhausted? No I bloody won’t! I can hear all the sympathetic sighs from you reading this now, the “oh dear she’s in denial” let me assure you I am not, I am well aware of my plight but wallowing and pity won’t get me anywhere so as of tomorrow I am back on it!”
As people affected by cancer we don’t have the time to wait for such complex systems to help us, so please think of how your actions may be impacting people, in whatever service you may be providing. Above is the reality of not working together as well as we should! I would like to thank Abi for sharing this very powerful piece and we will be doing our best to find the trials she so urgently requires.
Is it complacency on the part of the services in question? Are they all too busy patting themselves on the back about what a wonderful job they’re doing that they fail to see the reality of the failures in the system? Or are they all now so busy safeguarding their share of the money from the cancer pie that their objective is no longer to do the best for the patients they profess to serve? My father died due to failures: failure to diagnose him despite us flagging up cancer as a possible cause at every opportunity, failure to address his pain needs adequately, failure to work together and communicate between departments. He was denied a hospice place because he wasn’t going to die soon enough – he died exactly seven weeks after diagnosis, they’d been told he had up to a year to live when oncology had said less than three months . He had no quality of life – or death – he was written off, expendable. The dots aren’t being joined together and patients are becoming ‘someone else’s problem’. I know death is a reality of life but needless suffering isn’t. Rant over. Deb xx
That wasn’t a rant Deb! You made some extremely pertinent points, many of which sounded like just basic communication issues. I believe that there is an element of complacency, very definitely, and also lack of accountability. There are so many gaps and grey areas in the cancer world, that other than staff on the frontline, the support services are very disjointed.
Unless we become much more joined up with cancer care we will have big problems in the near future as more of us become affected. The big frustration for me is that there are people out there providing many of the services we need, but they struggle to get heard above the constant marketing noise of the large organisations.
Best to you as always Deb! #WorkingTogether
Thank you Chris. #WorkingTogether is so important to ensure that patients don’t ‘fall down the cracks between paving stones’ and get overlooked. Have a good evening. Deb xx
Chris,
For excellent clinical trial guidance in the US, contact Oncolink at the University of Pennsylvania.
Thx so much Pat, I will look into that now!
Abi’s story is utterly heartbreaking: issues in oncology always ALWAYS go back to the very basic communication level and its so frustrating. An excellent article, Chris, and Abi – thank you so much for highlighting such critical issues. May your new chemo regimen give you strength to continue seeking clinical trials and funding. Blessings to you and yours xx
Hi Callie, I agree with you entirely, and like you I see it all too frequently, and needed to share this post. It has hit home with many, and we see so many examples of it between service providers. The cancer world has so many people working in it, but so little effective collaboration. So sad to see politics even enter this arena!
Big love to you and thx xxx