Firstly, let me thank all my friends here and readers for your patience while I am absent from many of your blogs and commenting. Also, even more importantly, a huge thank you for continuing to keep me in your thoughts and prayers and for all your good wishes. They are all so much appreciated and much-needed right now.
As most of you will know, I have been waiting for my CT scan /colonograph results for the last two weeks. The scan was done as a result of having signs of bowel cancer. I was told at the time, I would receive a letter in that time, giving me my results. So far, nothing …
… until a letter from the hospital dropped through the letterbox this morning. My heart was in my mouth, and I was full of trepidation, not knowing what to expect. I phoned my friend, as I was too scared to get the results alone. On opening it, I saw it was from the NHS gastroenterology department, as expected. However, instead of my results, it was a letter giving me a routine appointment for the 22nd of April – six weeks’ time! I thought perhaps a mistake had been made and I phoned the consultant’s secretary and left a message. So far, I haven’t had a callback. So, I phoned ‘appointments’ to see if I could get an earlier slot, but, no, nothing – there were no earlier appointments for that department for anyone.
So, here I am, none the wiser and left dangling in limbo for six weeks. The long wait feels unbearable right now. I am despairing.
Logic is trying to tell me that, surely, if I had cancer, they would have seen me earlier than that, but it’s the being left hanging in mid-air that’s so difficult to manage emotionally. My mind obviously isn’t very logical at the moment.
I’ve been doing my utmost to stay positive and was helped and comforted by all of your kind thoughts and prayers. I’d even started to read one of two blogs again, although I haven’t always left comments. Nevertheless, reading your work has been a refreshing distraction for me while all of this uncertainty is going on.
Now, my brain feels scrambled, my anxiety levels have shot through the roof, and my concentration has fallen into my boots. Where do I go from here? The waiting feels unbearable. The two-week wait felt painful enough, but now that I have another six weeks to wait, it feels like agony.
Essentially Ellie (My Heart's Tales) 
Ellie, that is so awful that you’ve to wait another six weeks! I can’t believe they are doing this to you! It reminds me of our own failing health system here in Ireland, I’m so sorry, sending a big hug to you, all my love and my support. Xoxo
Thank you, Carol anne, for your kind and understanding words. I’m sorry your health system is in a similarly bad state. Thank you very much for your love, hugs and support – it means a lot to me. I hope you are coping okay? Love and hugs from me to you, too. Xoxo 💕😘
Ellie thanks 😊
🌷
Good grief! What the hell. I don’t quite know what to say. Like you, I’d like to think that if it were cancer they’d arrange an urgent consultation. I imagine the follow-up in this case is, if there’s no cancer, to go through other possible causes of any symptoms. But they have to give results sooner than this, it’s unrealistic and quite sickening to assume patients can simply wait another 6 weeks to hear whether they have cancer or not. The secretary should be the best bet – to call and explain you thought you’d hear by now and you’re twisting yourself up inside not knowing, say you’d just like the result as a yes/no now and then you will wait for the scheduled appointment. It can be hard getting hold of secretaries. I’ve been known to call several (okay, in the 20s) times in a day trying to catch them and eventually you get lucky.
I’m so sorry, I can only imagine what this is like for you. Hang in there my friend. Sending lots of love xxxxxx
Thanks for being so understanding, Caz. It is barbaric to expect patients to wait six weeks to know if they have cancer or not. I phoned the consultant’s secretary twice today and left two urgent messages. I’ve had nothing back, so I guess it’ll be Monday now. I will ring again at 9am on Monday. Good for you for persevering with getting in touch with a secretary. I will do the same.
Having overcome my anorexia, this not-knowing if I’ve got cancer or not is making me feel sick all the time, and I have a job to get food down me. I’m trying to make myself eat simple things, as I don’t want to lose lots of weight again. I feel like my stomach is tied in knots, which isn’t helping, either. I’m losing sleep over the worry, too. Even if it’s not cancer, I want to know now, and I want to know what’s causing my severe symptoms, which are interfering with my daily life.
Thanks for being so kind, my friend. I will update my blog if I hear more on Monday. I am so lucky to have so many lovely friends and readers on my blog who care so much and give me so much support and love like you. Much love and many hugs to you, too, dear Caz. Xxxxxxxx 💓🤗🌹💕
Hang in! In my mind if if were a conclusive yes for cancer, they would contact you sooner. If it is inconclusive, then they may wish for more testing. Even if it were cancer, there are many successful treatments available to you now that weren’t available even as few years ago.
If they suspect it is colorectal cancer, and the tests come back negative, the fact that you have some of the symptoms are signposts to changes that need to be made in your lifestyle and diet. It wouldn’t hurt to look at those and see what you could incorporate to help your health.
For myself I looked at adding probiotics and digestive enzymes with each meal, and my personal symptoms improved. I try to eat a diet that is favorable to good colon health, and you can find out so much online. You can research these to see if they would be beneficial to you.
I know this is a hard ask, but try to just keep living your life as though the results are negative. A positive outlook is very important.
Thanks for your helpful and kind comments, Tamara. I’m fortunate in that my wonderful counsellor is not only an eating disorders specialist, who has got me better from my anorexia, but is also a nutritionist, as is one of my friends. My friend is a very ‘alternative’ nutritionist and both these people have helped me to change my diet by adding certain beneficial supplements, foods etc. I’m taking something called Optibac (Probiotics Bifido & Fibre – Vegan Digestive Probiotic Supplement with FOS Fibre), which I take with meals, I have a very healthy breakfast, which includes blueberries, nuts (almonds and walnuts), prunes, oats, flaxseed, soya yoghurt etc. I cook from scratch everyday, so I know exactly what goes into my food. I also now drink 2L of water a day, which took some getting used to at first, but now, it’s easy. I make green smoothies with flaxseed and bio cultures etc. If you have any suggestions, I’ll happily take them on board.
Up to today, I’ve been trying to remain positive, but this letter has just blown me away. The thought of waiting for six weeks before I know more is almost unbearable. I will phone the consultant’s secretary again on Monday to get some more information. I am getting on with my life as best I can with the symptoms I have and the side effects of the medication I have to take, both of which stop me doing a lot, which is frustrating. I will update my blog on Monday if I know anymore from the secretary. Thanks, as always, for your valuable input, Tamara X 🌹
You seem to be in good hands with your therapist and nutritionist. Keep going! Try to put the negatives to the side, “I see and hear you, we’re going to focus on the positive today. ” One day at a time!
My therapist and nutritionist are wonderful. My therapist, especially, for getting me moving on from the anorexia altogether now, which I’m so pleased about. Life is much more enjoyable now and I can go out with friends to have a meal, which I hadn’t been able to do for over a year. Thank you for seeing and hearing me, Tamara.
I had my friend and home help here for a couple of hours this morning, and she always cheers me up, so, today, at least, feels more positive than yesterday, although the anxiety and fear is still hovering underneath. At least, it’s not consuming me today. Yes, one day at a time. Thank you. X 💐
Yeah, that’s ridiculous. Hopefully they will give you more info over the phone. Distressing that it’s the weekend. I guess one thing to be said for America’s overprice health system, (at least for me) test results rarely take more than two days.
Thanks, Jeff. It’s good that you get your results so quickly over there. I’m hoping to get some more information from the consultant’s secretary on Monday. Why do these things always happen on weekends!? Typical. I know I’ll be worrying all through the weekend, although I’ve been doing my best to remain calm and positive. Since getting this letter, it’s rather set me back a bit. I’ll update my blog on Monday if I find out anymore then. X
I meant to add, I’d take this as a positive sign.
Thanks, Jeff. I’ve been trying to do this for the last week or so. This letter has put me into a bit of a spin, though. I should know more on Monday. Thanks for caring, Jeff. X
I’m reluctantly making a suggestion here: see your GP if that is possible. I say reluctantly because I don’t know how the health system is set up there, but a GP should, I hope, have some sway with the hospital specialist. Perhaps it is worth trying.
Love
DD
XOX
xox
Dear David. I did phone my doctor in the hope that she could find out more than me from the consultant, but I just got the reply that I will have to wait until my April 22nd appointment to get my results! There wasn’t anything she could do. Not much help there then. She wasn’t my regular, lovely doctor, but she’s on two weeks’ leave from Monday. Just my luck. The health system here, as in many places, is falling apart, especially after Covid and now with all the recent doctors’ and nurses’ strikes. Thank you for the idea, though, dear friend.
Much love ~ Ellie Xox xox 😘
P.S. I will email you more tomorrow. Xox
I should have known.
Can you make an appointment with regular Dr anyway?
Our surgery won’t let us book appointments in advance since they’ve installed this new automated system. We have to fill out an online form with all the details of why we want to speak to or see a doctor and then wait for them to text us back with a yes or no for that same day. If they can’t see you on that day, you have to go through the whole process all over again the following day, ad infinitum. You couldn’t make it up, could you!? Xox
Did Aldous Huxley, George Orwell and Aleksandr Solzhenitsyn conspire to make this up?
I think they must have done, David. It’s ridiculous, isn’t it? What happened to the human touch? Machines and technology are taking everything over. I don’t dislike technology, especially my usually trusty laptop (when it’s got Wi-Fi!), without which I would have never got to know you and my other blogging friends. My surgery, when I’m lucky enough to get an appointment, has only got two receptionists there, whereas there were at least three or four. The receptionists won’t make appointments for you anymore unless you have no access to the internet. Love Ellie Xox
Ellie I am so vexed for you I really am !
I am so hoping that if anything serious had been seen on the scan you would be getting seen sooner🙏.
But I completely understand your anxiety!
Much love dear friend, and many hugs .
You ate in my thoughts ❤️🌹❣️🥰
Xxx
Thank you for understanding that, as well as being upset, I am also angry and cross about this. I’m hoping for the same thing; that, if they had found cancer, they would have let me know by now. However, it doesn’t help the anxiety and fear. I hope to get a call back from the consultant’s secretary on Monday, but whether that happens, remains to be seen. Thank you for keeping me in your thoughts – you are so kind.
Lots of love to you, dearest friend, and lots of hugs, too. Xxxx 💓🌷🥰💕
No thanks needed Ellie my friend xxx
I hope you recieve some forward progress shortly 🤞
Big hugs to you ❣️🌹❣️
If you can, Ellie, ease up on yourself. Likely you are right, they would have called as soon as they knew. If you were in Canada, not hearing directly but being given a new date, they are saying they haven’t found the problem yet, and need a closer look.
It’s not exactly a good way to do things, but bureaucracies don’t care much about feelings. That is unfortunate.
Smile for me.
Thank you, J. I hope we’re both right in that they would have called by now if it were cancer. Perhaps, like in Canada, that’s the case with me. They are still investigating. Nevertheless, I was told quite clearly that I would have a yes or no reply within two weeks. Six weeks is just a tad longer than two weeks. NHS hospitals are different from what they used to be with a lack of government funding and repeated doctor and nurse strikes, meaning even vital appointments and treatments have been cancelled.
Just for you, a big smile 😃 X 💙
Thank you for the smile, and the love. ❤🧡❤💚❤💚❤💙💜❤🤎❤🤍❤
You are so welcome, dear J. Xx 💓❣💕❣💓❣💕❣💓❣💕
Nicely done Ellie – your post I mean, what & how you said what’s up for you. Can we be blunt? Isn’t that what you want anyway – that they’d just say a result. So I will take that tack with you. First, I love you no matter what, even live or die. Is there another choice?
I do monthly blood tests to monitor my blood cancer. Doctor says & I understand – not hearing sooner than the next month’s visit simply means – nothing to worry about. Not the best form of communication clarity, but I understand, and personally, I trust the man. So I’m fine – no word means OK. Besides most institutions wouldn’t like the reputation of letting patients die just because they didn’t communicate with them – their self-motivation dominates if nothing else. And yea, two countries and I know nothing specific about UK medical service.
So be at ease I suggest. What’s worst case? Well, yea, bumpy life. We only get so much time here in life. Some more, some less. Nothing fair. That’s why love matters more. Love only takes a moment but it can fill an entire life. Please know I will love and pray for you no matter what – even if you’re well and happy – even then. You are appreciated. Your life is a gift to us.
Oh, Neil, what a touching reply – thank you so much. You are quite right – I just want a result. Obviously, I’d rather it be a good one, but if it’s not, at least I’ve got something to come to terms with and learn to accept. It’s the constant not-knowing that is causing me all this anxiety and fear. I know I can be strong inside and have had to be through many of my life experiences, including during my childhood. I am, on the whole, a survivor in terms of not giving up the fight till the last.
Thank you for your beautiful words about loving me no matter what. What a moving thing to say. It is appreciated so much, and I thank you from the bottom of my heart. You are right – we all only have a finite amount of life; none of us knows when our lives will cease for whatever reason. I can deal with a bumpy ride, even if it seems unfair.
I didn’t know you had blood cancer, dear Neil, and it sounds like you have a good doctor in that you trust him to keep you in the picture as and when needed. I hope you stay well and live long.
Perhaps for me, no news is good news, then, as I mentioned in my blog (I think). I can’t say I liked or trusted my consultant. She conducted my assessment in a bizarre way. Firstly, she had me back up in Alfie (wheelchair) as far as the wall opposite her, whereas I’d driven in and sat by her desk as you would do when you see your doctor. She wasn’t wearing a mask, so I assume she wasn’t concerned about Covid. Then, she insisted on talking through a microphone even though I was only parked about a metre away, and I told her I could hear her perfectly well without the microphone. She just ignored me and continued to ‘shout’ at me through the microphone. For a consultant dealing with potential cancer patients, her bedside matter left an awful lot to be desired. My appointment letter says I will be seeing Dr ***** or one of her team. I think I’d rather it be the latter. Is that petty of me? I just felt very uncomfortable with her.
Our NHS used to be of a much higher standard. It’s been entirely run down by government cutbacks and doctors and nurses strikes, where appointments and, occasionally, essential treatment have had to be cancelled. It is neither ideal nor fills you with confidence about our health system.
You are absolutely right in saying that love matters more. I totally agree with you. Love (and kindness) can change a person’s day, month, year or lifetime (however long we have), as you said. Thank you for loving and praying for me regardless of what is happening in my life. You mean a lot to me – you are one very beautiful man. You, too, are much appreciated, always and whatever. I’m so glad I’ve got to know you as a dear friend through our blogs.
I go to the Quakers’ meetings on Sunday mornings. There, we all have individual beliefs, and that’s okay. They are the kindest and most loving people I have met in a religious setting, unlike the last church I left many years ago. We sometimes say, ‘God bless’, but more often, we say, ‘I am holding you in the Light’, which means a similar thing. I think it’s beautiful to hold someone in the Light – I really feel it coming from my core, so, on that note, dear friend, I hope your blood cancer doesn’t cause you too many problems or unpleasant symptoms, and I am surely holding you in the Light. With my love, always, dear Neil ~ Ellie Xx 💜
Thank you Ellie for your good and kind heart. ♥️ I am here with you.
🥰
Oh my word – what a disappointment to not know the outcome of your scans, Ellie. I’m sorry that the letter you got held no answers and I’m sorry the appointment is such a long wait, too! My goodness. You must be beyond stressed. I’m sending you a gentle hand squeeze and will wait with you. Praying for blessing over your health, my friend xx
Thank you for your kind and understanding words, Janet. Thank you, too, for your prayers – I appreciate them very much. I am extremely stressed, worried out of my mind and somewhat angry that the hospital are making me wait six weeks to find out if I have cancer of not. Thank you for waiting with me during this time. I can’t tell you how much I appreciate that, dear friend. Love and hugs to you Xxx 🌷😘
I certainly understand your concern and anxiety in the prolonged delay in getting your results Ellie 😢
I am wondering whether your ‘routine 22nd April appointment’ has crossed whilst awaiting information about your results for tests?
Thinking of you and sending love 🥰
Thank you for your kind and understanding comment, Margaret. It’s appreciated very much. That’s a suggestion I hadn’t thought of at all. Perhaps I will get another letter this week, or better still, a call back from the consultant’s secretary with some more useful information. Thank you for giving me a bit of hope today – it is much needed.
I hope you are well and thank you very much for the love you have sent to me. That’s just so lovely. I will update my blog as soon as I have any more information. Love to you, also Xx 🌹💕
OMG! Waiting is the absolute worst and feeling like you are being ignored is even worse. So, if they are only going to examine the results they should be able to tell you whether or not you have cancer in less than ten minutes and you shouldn’t have to wait six weeks to hear the results! The Squeaky wheel gets the grease! You need to be a warrior for your own health and not a lamb they can shuffle along!!! You need to tell them not knowing is causing “Extreme Emotional Distress” and Anxiety and you need to know within the two weeks you were told you would hear back in!! Extreme Emotional Distress is a very well know legal term to them and you can tell them this not knowing is causing you mental harm!!! I’m sure that there is a Patient Advocate somewhere in the hospital or system you are in and you should demand to see them.
xoxo
LAH
Thanks for your kind and concerned comment, Chuck. I do hate waiting – it’s not something I’m paritcularly good at when waiting for news. However, I don’t mind waiting for my appointment at the doctor’s surgery or hospital while I’m there, providing I’ve got a coffee/tea, my phone and a book. But, waiting for good or bad news is something different altogether. I like the phrase about the squeaky wheel – very true. I have phoned the consultant’s secretary twice on Friday afternoon after I got the letter, and will continue to do so on Monday until I get a reply (assuming she’s working on that day, of course). I’ve never heard the term, ‘Extreme emotional distress’ used as a legal term, although I’ve felt those emotions often enough.
I did speak to PALS (our Patient Advice and Liason Service). They only gave me a phone number, which took me to the appointments department! I may speak to them again if need be and I don’t hear anything more on Monday, and make sure I don’t get put through to the appointments desk again. I tried them in the course of the day anyway, only to be told, there were absolutely no earlier appointments for anyone, with or without the risk of cancer. Thank you so much for caring, Chuck. Love ~ Ellie Xox 💓❣💕
Sounds like you need to hound the PALS – they can get things done if they want to and you are enough of a Pain in the rearend. I’m sure they could get their mother in??
Chuck xoxo 😊😁💕💕🌹
🌹😁🌷💕
That sounds awful, I mean can’t they just tell you the results? Keep strong 🙂
Thanks, Simon. I’d assumed they would give me my results quite promtly, not leave it for six weeks. I will phone the consultant’s secretary on Monday to try and get some more information from them. I am doing my best to keep strong – thank you X 😊
Fingers crossed for you xx
Thanks very much, Simon xx
Why can’t they just let you see your test results without an appointment? Do you have access to your records online? My husband and I have a “patient portal” where we can see test results, sometimes before the doctors do (which isn’t always good). It’s so wrong to make you wait another six weeks for your results!! On the upside, I do think if it was positive for cancer they’d get you in sooner, but that’s still no excuse for you to have to go through the agony of waiting another six weeks. I’m so sorry! I hope you’re able to get some answers soon!
Thank you for your kind words and thoughts, Ann. We don’t have patient portals for our hospital records, only our doctor’s records. Apparently, I’m meant to get a letter in the post (they said within two weeks) with my results at the same time as my doctor will get my results, too. Six weeks is an awful long time, but my therapist suggested, yesterday, that perhaps there is another letter in the post that might have crossed with the six-week appointment one, which sounds like it’s just routine. Maybe she’s right. I think you are right in that, if it were cancer, they would let me know sooner than six weeks’ time. I’m hoping for a letter this week, but will phone the consultant’s secretary again tomorrow to check on this.
In the meantime, I had my Quaker meeting this morning, which is always a very special and peaceful experience. I came out of it, feeling strangely at peace with myself and the world. You will see my poem about it on my blog shortly. Thanks for caring, dear Ann. Xx 😘
More waiting may be a blessing in disguise, perhaps. The urgency of a cancer diagnosis would likely require quick attention, one would think. so maybe the six-week wait bodes well for you. Still, not knowing can grind down a person with worry. I hope you’re able to be as stress-free during this waiting period as possible, Ellie. I wish you didn’t have to wait for a definitive answer; I wish none of these problems were occurring in your life.
Here’s wishing you peace and hope as you wait, and that good news is on its way. 😊
Thank you for such a kind and lovely comment, Mike. Yes, you could be right. I would like to think if the diagnosis were cancer, they would have told me by now. However, six weeks is a long time to wait.
I can see you read my following poem, ‘Quaker Peace Within’ – having had that experience and written that poem, the fear has melted away and I feel at peace with whatever the outcome will be.
Thank you very much for you kind wishes for peace and hope. I will write an update to my blog when I know more. I hope you are well, my friend X 😊
Praying for you and your family, Ellie. Hang in there…
Thank you, dear Tangie, for your prayers and thoughts. You are so kind. Xx 💛