Monday, 27 September 2010

What next? Thanks Sarah for asking!


Feeling a bit better than last time and am listening to advice to give it time...I have been throwing myself into normality (whatever that is!?!) and need to take some of my own advice, take a step back and regroup again.

I have my first 9 monthly CT scan Sunday morning at 08:40 (I know....a Sunday, that is due to the committment of the local teams to keep waiting down to a minimum)in Chesterfield and my second 3 monthly blood test in a couple of weeks so things are moving on...

After having an email conversation with the lovely colorectal nurse I feel a bit more settled...In my last post I had requested a PET scan (more detail) and was turned down gently, I then sent a further mail and have received a positive response that my case is being discussed, therefore I am going for the CT scan and will continue with further discussions with my care team as to early detection methods. The likelihood that my C2, T4, N2, Mx Adenocarcinoma may return is pretty high so I am taking no chances. The location and type denotes whether it is terminal or not, sobering thought alert, read on to see the response:

I am going to put your case to the MDT meeting and/or Mr S for discussion.
Your first surveillance CT scan should be anytime now anyway.
I can quite understand why you feel a PET scan is best but you know there is
more to it than that. Some metastatic disease is treatable by surgery eg
operable liver secondaries whereas peritoneal or lymphatic disease would be
chemotherapy and we are talking palliative disease.

I think you should come to our clinic one Monday afternoon once you have had
your scan and I have had time to present your case and then we can discuss and
answer all your questions. mr S is away next week so I wont see him for a
couple of weeks.

Do you think this is a good idea?

Do think it is a good idea, absolutely...So my plan of attack is simple albeit exhausting...

1. Pray and request further worked before so it can again...

Look at the T4 chart to see the extent and with 11 out of 37 Lymph nodes, well I will leave the thought to you...

2. Continue with my daily diet of healthy green juices, wheatgrass, barleygrass powder, E3 Live, Vit D, C and multivits, glucammune, probiotic powder, EPA among other things and my regular contact with my integrativ therapist

3. Contacting emminent oncologists around the country for advice/ comment on my case...a little unorthadox I know but I can't sit around waiting

4. Regular EFT sessions with to be worth it!

5. Regular contact with my NHS care team to keep asking for further testing...some may not want to be a nuisance but I absolutely do!

It seems quite poignant that my journey is moving into checking for return and my dear friend Carole is to go under the knife on the 4th October. She has been so brave and has inspired me to question, question, question as she is now an 'official nuisance'. Because of Carole I am not accepting the term 'standard NHS practice' and will work with my NHS care team to look for other ways of early detection! Thanks Carole you are a star!

6. Pray (yes I know I have it twice) but it is very important to me so it deserves it...people always ask why/how can your faith stay strong when you have this horrible disease...well there is a purpose and reason for everything...for instance I was run over and injured seriously about 25 years ago (broke leg badly, fractured ribs which punctured my lung, broke collar bone and shoulder blade and dislocated my elbow) If I hadn't have been through that I wouldn't have met Fran - ask me one day and I will tell you why I have come to this train of thought. Therefore me having cancer has a purpose, maybe it is the work we are doing on the cancer research site, maybe to meet friends like Carole or chat with one of my oldest friends Jamie about his cancer journey, or to chat with my friend Tanya in the US (who calls me her Tony) as her life comes to an end (she is alive 16months after being given a 6 months prognosis so she is hanging on in there and hoping she will continue), or my friend Shents, she looks great with a skinhead (brings back memories) or have a mentor like Rodis and help her through her loss as she has helped me, to bring me closer to my family who have supported me through this or realise what a great company or boss that I work for... maybe I just don't know where this journey is taking me but all I know is it aint over just yet...

Better had go and eat something as have home made (by my Fran) Blackbean Soup and tiger rolls waiting downstairs!

Much Love to you all and just before I go...don't wait like I did to write a list of things you want to do before you it now however young or old you are... I am learning to ride a big motorbike (no Fran you can't wrap me in cotton wool!) I have already passed part 1 of 4 so becoming a realisation :-)

T xxx

Wednesday, 15 September 2010

In Limbo...

The title says it all really...not looking for sympathy or understanding just wondering what is next...

I have had an amazing week after starting back at work full time on Monday and even though I am shattered I feel good that I have not forgotten how to be a project manager. My Boss Richard continues to amaze me with his caring and compassion...he is a good egg!

I went to an amazing wedding last Friday, staying at the venue which was about 50-100 yards from the church, Charlie looked amazing in her white dress and Chris looked perfect for her! I drank too much and danced (which I never ever do) and Fran had fun and our great friends Wend and Steve looked after Charlotte..

However, I feel strange and my emotions appear to be shutting down...I have been arguing with Fran and Charlotte a bit more than usual over the past couple of days and now I can barely bring myself to talk...I will make sure Fran sees my blog as finding it difficult to is certainly not anything Fran has done, how could it be :-)

I have been asking a few questions of the lovely colorectal nurses as don't feel settled with my after care at the moment.

My care with Dr K (my holistic integrative therapist) is fine and I am continuing my daily regime which consists of plenty of green juice made from spinach, lemon, apples and ginger, heavy duty supplements to bolster up my immune system,EPA (fish oil), probiotic powder, vit c, multivit drops, flaxseeds, wheatgrass shots, barley grass, E3 Live (algae), Lecithin alongside colonic irrigation and wheatgrass enemas twice a day...

My local GP surgery especially Dr P is top notch...

So whilst I am pushing hard with my body and praying harder than ever I cant help feeling a little strange. Maybe the fact that I am waiting for my next blood test and first full scan in October - I asked for a PET scan and was told that they work within NHS guidelines...I have the greatest respect for the colorectal nurse team, they do a fantastic job but I am not accepting NHS guidelines when a detection of cancer at an earlier stage can mean it will be easier to a later stage of the cancer travelling to the lungs/liver it means palliative care!

I have noted the response I received and am awaiting a further response as the lovely lady says she wants to take time to consider the response...I absolutely don't want to upset anyone and be a nuisance but the more I type the more I believe I have to push a little harder...

Our policy is to follow National Guidelines which is a CT scan at 9months if
this shows any abnormality we then address that problem which may involve other
scans including MRI and PET scan.
We never use PET for routine surveillance. I think what you have to realise that
even if a PET did pick up hot spots it doesn't mean that we can treat or cure.
The other routine process is if your CEA rises for 3 consecutive tests, we would
do a CT scan, if scan is normal, we then do MRI, if that is normal we do PET.
You could pay for a PET to be done privately but I feel you need to discuss this
a PET scan is not always the best scan but is specific to some issues, what you
have to remember is that all scans have their specific place in diagnosis,
treatment etc, there is not a superscan that replaces all the others.

I have contacted my oncologist too to ask about trials and any further ideas as I couldn't have my chemo (allergic to 5FU, it could kill me) and received the following reply...

Dear Mr Songhurst,I understand your anxiety regarding your diagnosis and have no problem with you e-mailing me with any questions. As you say the process to get referred sometimes seems very long winded and hopefully I can answer your queries more promptly in this way. Unfortunately currently the only evidence which we have regarding adjuvant chemotherapy (chemotherapy aimed at reducing the risk of the cancer returning following potentially curative treatment) in bowel cancer uses 5FU (or a derivative of the drug) as its mainstay.

Irinotecan is a drug which is commonly used in colorectal cancer in the palliative setting (aimed at controlling the disease when it has already spread). It has been looked at in the adjuvant setting comparing it to 5FU. Unfortunately all these trials have been negative and this drug has not been shown to be a benefit in this setting. So while this drug would be safe to use in your case there is no evidence to suggest that it would increase the chance of the cancer staying away.The trial looking at EPA in colorectal cancer which spreads to the liver is looking to see if this is a safe drug and can affect tumour markers.It is a placebo double-blind controlled trial which means that half the patients will receive placebo rather than active treatment (the doubleblind bit refers to the fact that neither the patient or the treatingclinician know what the patient is receiving). The fact that they are using a placebo means that there is no evidence to suggest that EPA has any activity at all. Most of the research using EPA seems to be looking at something called cancer cachexia which is when patients with advanced cancer loose weight. The evidence in this setting also seems very mixed with the larger trials not seeming to show any benefit for this agent.I therefore think that currently there is no evidence to suggest that EPA (or other supplements for that matter) have a proven role to play inthe treatment of cancer. That being said some people do feel that they would like to try to see if it can help and I have no problem with this.My only concern would be that you do not spend large sums of money on these as many web sites promise the earth with no scientific backing and charge very large amounts of money for their non-proven product.As for clinical trials the only trials which I am aware of as ongoing in the UK in the adjuvant setting are both using 5FU based chemotherapy,one is looking at the addition of bevacizumab (avastin), which has not been shown to be an advantage in other trials, and one looking at whether we can reduce the duration of chemotherapy from 6 to 3 months.I'm sorry that we don't have more to offer at this stage, unfortunately while 5FU is an old drug it still forms the backbone of many treatment regimens currently used in colorectal cancer.If you have any more questions or would like an appointment face to face to discuss these or any other issues just let me know and I can arrangethat for you.

Both team are amazing but I need more or at least help to accept there is nothing more and I just have to wait.

My staging of Dukes C2 PT4 N2 MX with 11/37 nodes gives me a 35% chance of being here in 5 years time (or so the website says and whilst I am mainly half full and will be okay tomorrow or the next day I just need time to digest please don't feel bad or offer me pearls of wisdom, there are many far worse off than I.

Much Love