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Just Diagnosed


Bolt out of the blue

Hi everyone :)

My Dad, 64 years young, has just been diagnosed with advanced bowel cancer. Despite me being a pharmacist and knowing that his symptoms (recent-onset heartburn and nausea) could potentially be The Big C, I still feel as though I’ve been hit by a bolt out of the blue.

When I encouraged him to speak to his GP, I knew that cancer was a potential diagnosis, but nothing prepared me, or my family, for the shocking news that the cancer had already metastasised to his liver and lung.

Dad is now three weeks into his bowel cancer journey. He is fit, with no other pre-existing health conditions and has always eaten a healthy diet. He doesn’t smoke, and his alcohol intake is within recommended limits. He participated in the Bowel Cancer Screening Programme in 2008 and again in Feb 2011; both test results were negative. There is no cancer in his family, and he had no symptoms until three months ago. We are struggling to comprehend how this could have happened, right underneath all our noses.

We have been told that Dad’s primary tumour is located in the transverse colon, and has probably been there for anywhere between three and five years. At the moment, the multi-disciplinary team consider the tumour to be “too complicated” to be removed by surgery. The first appointment with the oncologist is on 24th October, where we will discuss chemotherapy options. The K-RAS test has been ordered.

In the meantime, we are trying to come to terms with this devastating news. Ours is a strong family unit: my brother and his family live around the corner from Mum and Dad, and I live half-an-hour away with my husband. We have pulled together and decided, as a family, to meet this head-on, together.

I’ve been very impressed with the quality of information available from Beating Bowel Cancer. As the “medical” person in the family, I’ve been reading up on all aspects of the condition and have found this website very helpful. As such, I’ve sent a donation and said hello on the charity’s Facebook page. People have been very friendly and invited me to post on the forum, so here I am!

My Mum and Dad (Enid and Andy) will probably visit this forum from time to time, so if you’d like to leave a message for our family, we’d love to hear from you.

Nice to meet you all!

Mary HB

I add mine to those of Gypsy to your Dad - will keep him in my prayers

Mary :x::x:


Hi Lindsey. It's great to have an update on how things are going, but as in most cases, it's a mixed bag. You're poor dad has my heartfelt sympathy; having been in both situations myself separately, I cannot begin to fathom what's it's like suffering both conditions simultaneously. How lovely that he got to have a holiday; sunshine is very healing, and it's a blessing he was well enough to go. As for Steve's beard, you did make a promise! Thinking of you and holding you all in my prayers. Hugs, B :x::x:


Hi Lindsey,

Your poor dad. I sympathise as I managed to get Bell's Palsy (related to shingles) during treatment and awoke one morning convinced I'd had a stroke as I couldn't move one half of my face. Luckily it wasn't too painful and caught in time it was treated and only lasted a couple of weeks

I do hope your dad manages to keep going. I too found my energy levels really low but was encouraged to go for short walks that I found really draining but I'm convinced they really helped



Thanks, everyone, your kindness helps our family in ways which can't be articulated fully :-*

Regarding aflibercept, there are a few threads here on the forum:


and you can access the PDF patient information leaflet here:

Aflibercept has a similar mode of action to bevacizumab (Avastin) and a similar side-effect profile.

Aflibercept has been added to the NHS England National Cancer Drug Fund list:
The CDF states the following about funding criteria:

The second line treatment of metastatic colorectal cancer where the following criteria are met:
1. Application made by and first cycle of systemic anti-cancer therapy to be prescribed by a consultant specialist specifically trained and accredited in the use of systemic anti-cancer therapy
2. Metastatic colorectal cancer
3. PS 0 - 2
4. Progression following first line treatment with oxaliplatin-based combination chemotherapy with or without bevacizumab
5. Given in combination with irinotecan-based combination chemotherapy until unacceptable toxicity or disease progression
Note: Aflibercept is ONLY approved for use in combination with irinotecan-based combination chemotherapy and is not approved as a single agent maintenance therapy
Note: No treatment breaks of more than 4 weeks beyond the expected cycle length are allowed (to allow any toxicity of current therapy to settle or in the case of intercurrent co-morbidities)

The PS score stands for "Performance Status" defined as follows:

Hope this information is enough to get you started, Mooshi, but please feel free to get in touch with any specific questions.


Hi folks,

It's been a while since I last posted... So much has been going on since Dad went back on chemo. He had his first dose in Jan as planned and then on 3rd Feb was rushed into hospital, vomiting blood and with severe diarrhoea. He was kept in hospital for seven days. We eventually learned that he has a large ulcer in his stomach which was the cause of the bleeding, and the ulcer has turned out to be cancerous. This led to the awful conclusion: his cancer has spread. After a long meeting with the oncologist, his advice was to stop chemo; Dad made the decision to come off treatment and have his care transferred to the palliative care team. The news hit us all very hard.

The prognosis he was given on 17th Feb was that one of two outcomes were most likely; either there would be a slow decline over days or weeks, perhaps 6-12 weeks tops, or there would be a sudden, spontaneous gastro-intestinal bleed caused by the stomach ulcer, and if severe, this would leave him in a coma, and his time would be up. We feel as though we are living with a ticking time-bomb which might go off without warning at any time. Very upsetting and unsettling, but we are a family who likes to know, and likes to plan...

So we've been busy having lots of meetings with doctors, district nurses, the Macmillan nurse, and the hospice. Dad has signed a Do Not Resuscitate order, and we have a special care plan for a major GI bleed with "just in case" medication in stock. He's being treated as a hospice outpatient, meeting their doctor every week, and we're currently trying to find the right combination of medicines to reduce pain and nausea, balancing up the side effects. For two weeks, he was catheterised because of urinary retention (one of the side effects of his anti-emetic drugs) but thankfully the catheter has come out now that the anti-nausea drug has been changed. He's having good days and bad days, experiencing lots of problems eating because he feels full and nauseous all the time; his pain is fairly well controlled, and he's sleeping at night.

I must say that the care we've received from Oncology, the GP and district nurses, the Macmillan nurse, and the hospice has been second to none. Such a relief to me, as I really didn't want to be battling with the healthcare system in which I actually work!

We are now turning our minds to the arrangements for "when the time comes" and tributes are flooding in from all the people whose lives he's touched. We're planning a special tribute for a special man, and somewhat unusually, Dad is getting chance to see all the things we are preparing. It's always been my opinion that it's best to tell someone how much you love them whilst you still have the chance, and Dad has been humbled by the love expressed by his family, friends, and ex-colleagues, and it's provided a measure of solace in these dark, dark days.

My apologies for not taking time to visit other threads on the forum... Time is so very precious at the moment, but I wanted to update you on the journey our family has been on for the last two and a half years. Best wishes to all of you out there who are experiencing your own personal journey with bowel cancer, and I hope our story will live on through this forum for all who stop by in the future.


Dear Lindsey

Our hearts go out to you as we learn of yet another way in which this wretched disease can increase the pain and suffering of the people it afflicts. Your dad must have had some very difficult times, reading betwen the lines of the matter of fact way you have recounted this here.

Your fortitude and determination shines through this post and I am sure your dad is very proud of you and very glad to be able to see the arrangements and tributes which are going on around him

Clearly it is only a matter of time now and you are very kind to spare some moments to come in and add your lates news for us.

You must be seeing stars everywhere in these dark hours

Much love to you all.



To spare the time to update 'The Forum' so comprehensively and eloquently at this extremely sad and very, very precious time is amazing - thank you sincerely.

My thoughts and prayers are with your dad, you, your family and clearly his army of fans, hopefully in some small way the solace that can and is being found for an obviously truly loved gentlemen will be of some help.



Lindsey I'm so sorry to hear about your Dad. What a wonderful man he is and surrounded by his lovely family and super friends. As sad as it is I couldn't think of anything better for my final weeks.
Love to you all


Thank you so much for squeezing the time out to write so much to update us so very well, Lindsey.
Thank you for thinking of us.
Your dad is clearly a special person indeed.
God bless you all.

Debbie Dave

So sorry to hear about your dad, Lindsey. What shines through your post is the love and courage of you and your family, which will help you all so much over the coming weeks. You must be so proud of your dad.
Take care and thank you for taking the time to update us.
Debbie :x::x:


Dear Lindsey, your post is so full of love, for your beloved Dad, and is most humbling to read. The time you have left is so very precious and I thank you for taking some of it to come in and let us know how your Dad is.
I wish him days full of love and peace, and pray that his passing, when it comes is a good death.
Bless you all.



I was so saddened to read your update but then so moved by the love and strength of you and your family. I can't find the right words at the moment so just sending hugs and love and am so in awe of what you are doing and inspirational is the sentiment on my mind.

Glitterbug :x::x:


My beloved dad passed away peacefully on 30th April 2014 at Queenscourt Hospice, Southport, aged 66. We held his funeral yesterday and were overwhelmed to receive over 150 guests - standing room only. The service was absolutely wonderful; we laughed and cried, a true mixture of profound sadness as well as many other happy, funny and loving memories of an exceptional, beautiful, gentle man.

I would like to complete my dad's bowel cancer story here on this thread so that others might draw something helpful from our family's experience, and also for my own sense of completion now that we've reached the journey's end.

Following on from my last post, Dad was admitted to the hospice as an inpatient for 12 days in March whilst they brought his symptoms under control. He was started on a syringe driver, and eventually his pain and nausea/vomiting were somewhat improved. He charmed everyone in the hospice - the nurses adored him and the doctors admired him - and he remained a consummate gentleman throughout.

Dad found himself compelled to go back home to complete some final tasks of tidying up his affairs and making plans for his funeral. He was discharged and spent a week at home with Mum, completing most of the things he wished to do, but each new day his symptoms slid further out of control, until he became quite anxious and wished to return to the hospice as an inpatient.

We then faced a dilemma. My dad's wish was not to die at home - the place where he's lived with mum for 40 years and raised his family - he didn't want to spoil the happy memories in the house. He decided instead that he wanted to die in the hospice, and was upset and disappointed to discover that this wasn't available to him.

The hospice in our area of West Lancashire only provides 'symptom management' and does not admit patients who simply wish to die in the hospice. However, if a patient admitted for symptom management deteriorates whilst at the hospice, their policy is to care for that patient until they die. So, somewhat bizarrely, we found ourselves trying to work out when best to seek readmission to the hospice, so that Dad would get his wish.

Dad was readmitted to the hospice at the beginning of April, eventually spending four weeks there, deteriorating gradually. Family visited every day, lifting his spirits, providing solace and comfort, and reading out dozens of emails from friends which continued to flood in over the days and weeks. He received many visitors who were all very impressed with the hospice and the standard of care given. As I work in the NHS, I'm usually the first to pick up on insufficiencies, but I can honestly say that their care was flawless, and so full of compassion and understanding that was quite humbling to witness. And whilst Dad's needs were taken care of, our family also benefitted enormously from the warm and gentle environment; it meant that the time we spent with him was of the highest quality possible, and that we could drive home at night knowing he was in safe hands, and that gave us great comfort and peace of mind.

Over Easter weekend, my mum and brother organised an Easter Egg hunt in the hospice grounds, and the two grandchildren came along on a warm, sunny afternoon, and hunted for hidden chocolate whilst Grandad followed in his wheelchair - an afternoon full of laughter and fun and a fantastic final memory for the children to treasure.

When the time eventually came, Dad's passing was peaceful, with my mum holding his hand and stroking his cheek, my brother telling him how much he was loved, all the while listening Paint it Black by the Rolling Stones. I arrived shortly afterwards, sad that I'd missed his passing, but knowing that everything I'd ever wanted to say had been said in the last few months and years of his life, and our goodbye the night before was all I'd wished for. And Dad got his wish too. He died in the hospice, and as strange as this might sound, his death was beautiful.

During the funeral service, which Dad organised and contributed to, we read out Brian's footnote from the Beating Bowel Cancer Forum - "Sometimes beautiful angels appear cleverly disguised as ordinary human beings" - this was a quote which Dad loved as it described perfectly the unexpected and limitless care given by so many different people since his diagnosis, including the oncology staff, GP and district nurses, as well as close friends and immediate family. We have been blessed to know so many incredible human beings whose compassion knows no bounds. Please know that each and every one of you who have posted on this thread are included in that sentiment, and I thank you from the bottom of my heart for all your words of encouragement during the last two years and seven months.

I'm not sure when I'll return to post in the forum, as I need some time and space to grieve and heal. Please rest assured that my mum and I will read all replies to this thread, and we thank you for all of your kindnesses.

Rest in peace, my beloved dad, Andrew, photographed with me in the Fairy Glen, one year ago:


Community user

Dear Lindsey,
We often admit this on here but I truly do not know what to say. Your beautiful post has me completely overwhelmed and in tears.
With all love to you and your family and thankyou.

Debbie Dave

Dear Lindsey

I am so very sorry to hear that your dear dad has finally lost his battle to this awful disease. You are a close family which will help all of you so much in the days to come. I am glad your dad got his final wish and that the end was peaceful. It sounds like you have many happy memories - the Easter day you described sounds wonderful and filled with joy, so happy that your family was able to have this sunny day together.

love to you and your family, Debbie :x::x:

Polly 1

So sad. What a beautiful photo - lots of lovely memories. Thanks for completing the 'story' of your brave dad and his wonderful family

Sending love and best wishes - hard to type with tears rolling down my face :(


Dear Lindsey,

My heart goes out to you and your family and the very special man your father is. Your post moved me to tears as its so beautifully written and captured the recent chapter.

Sending a special glitter filled hug

Glitterbug :x::x::x:


Dear Lyndsey, so sad to hear your news about your dad. It is a beautiful picture of you both. I have been following your story. I am pleased you all managed to spend some quality time with your dad. Take care. Keep smiling. :x:


hello dear Lyndsey

may i add my condolences to that of the other folks here on the forum, you have done so much for your dad , and this is indeed a very sad loss for you, but because you have been so close and so good to him you have lots of wonderful memories to always cherish.

the easter egg hunt for the grandchildren was a great idea and will be a wonderful memory for them.

all my best warm wishes



Lindsey, thank you for sharing such precious moments and memories with us. What you say is profound and an ongoing measure of the utter love and compassion you have shown throughout your dad's illness. I'm sure that your words will be a blessing to many, both now, and in the future. I promise to remember you all in my prayers as you adjust to your sad loss. Hugs and love, B :x::x: