Lead up & symptoms missed… living with the guilt

Hi Fidge

I just want to welcome you to the forum . I can not  help directly but others will be along soon as this is discussed a lot here .

You have been through so much and the order of events and not being able to be with your parents when they passed is very difficult to process on its own . I too would have thought my body was responding to stress .

I just want to leave you with one thought . Bowel cancer is very slow growing so despite the delay there have been others here with a similar time line that has not resulted in spread . Given digestive systems do have lots of other symptoms from other conditions it can be hard to separate them out at times so people do seem to wait a few months to see if they settle . You are not alone on that front and part of the awareness work that is going on is to see past these symptoms and make sure which to be fair you did do when it surfaced again .

Hopefully as you read here you will see this is pretty common and being able to talk it through with other will help .

I am sure they will be along soon .

Take care ,

Court 

Hi Fidge and a warm welcome from me too. I’m so sorry to hear about your parents. Please try and be kind to yourself - this will have been your first xmas without them which will have been emotional enough but with your recent diagnosis and the anxiety of waiting for the hospital call on your dads anniversary - it’s a lot to cope with at the moment so I’m glad you’ve reached out to the board for support.

I was diagnosed in 2016 and, with hindsight, I’d had symptoms for over 18 months at that point. I’d taken voluntary redundancy from my job and put the sudden dash to the toilet in a morning to my change in diet - lying in bed with a cup of tea rather than getting up and having a fruit salad. When I started passing blood I decided it was probably piles and would sort itself out. I only went to the doctor because we were going on holiday and I knew my bowels were usually looser then so thought I’d better get things sorted before we went. I admit I did look at the symptoms for bowel cancer but decided I only really had the passing blood bit and none of the others so buried my head and carried on. 

I was diagnosed with a stage 3 tumour which was 4cm in size however size does not matter and I’ve heard about tumours being 10cm+. The scans showed that there was no spread and the tumour was 9cm in. Did I feel guilty? I was kicking myself for not going to the doctors sooner but was glad there was no spread  and focused on that as a positive.

As Court says, bowel cancer is slow growing but very treatable. I have just had my 5 year scan which showed no evidence of the disease as have the 2 friends that I made going through my treatment. 

The waiting for a treatment plan is very stressful but once it’s in place then things will honestly feel a bit better. The treatment can be tough at times both mentally and physically so please try and put the guilt behind you and focus on getting rid of the cancer. Worrying and feeling guilty will not change the situation but will run your system down when you need to be keeping it as strong as possible so try to eat well and do a bit of exercise even if it’s just a short walk each day?

I’ve attached a link to the booklet that I was given when first starting out which might give you a bit of a heads up before your meeting but please ask if there’s anything you’re worried about? We’ll be happy to help and support you through this

https://bowelcancerorguk.s3.amazonaws.com/Publications/YourPathway_BowelCancerUK.pdf

Take care

Karen x

Hi Jane, my situation is very different so the pain of losing your parents like that is difficult to read, I am so sorry. and for the anniverary too, I have seen my wife go through the same with her parents.

You are right though about positivity. Somehow through all your pain and shock you have managed to identify the one thing that will help most, the positivity is the one thing I got right during my diagnosis.

So if you can, at least take a look at yourself and realise you did the right thing going to your doc, and you are now doing the right thing by speaking here, and you have a self-awareness to know you need to move into positivity next.

So 5cm. Same as mine. Not that it's a competition :-) but like Court says, bowel cancer is slow and very treatable.

Mine was treated, and when I look back, it sounds odd to say, I genuinally have good memories simply because I remained positive (mostly). I looked upon my treatment as a job and I got down to it. A bit like I saw my wife doing when her parents died - she had to go into some practical positive headspace.

You talk of guilt. I left my cancer for years, knowing full well something was wrong. It was only when the pain became unbearable that I went to my doctor.

So you are already one step ahead of me....again, we are not keeping score, but so far you are ahead 

The way I learned to cope was to give the responsibility to the doctors. You have done your bit now. As my surgeon said to me, his job is to surgeon and my job is to relax - he told me that the best patient is a relaxed one, it actively makes his job easier - he can tell when operating if a patient is relaxed.

You need to be purely driven by the professionals. All your 'unprofessional' mind will do is invent scenarios that have no bearing on reality. Head down, listen to the docs, crack on.

This is how I coped at least. And I picked up a quote from somewhere which I stuck by through however I felt "what is happening is supposed to be happening, so relax" --the guilt you feel will be serving a purpose. It will be helping you in some way, Don't try and fight it, explore it. Again, it's what I did. But I always came down to the conclusion that what I did, is what anyone would have done if they were me. I can no more change my eye colour than I can alter the way I react to things. And the guilt will help you make positive changes in the future. You'll remember how it made you feel. So when you are asked advice by a friend in the future, or when you are facing a difficult choice, that guilt will serve you well to make the right decisions. Like I said, this is just how I coped. And now-a-days, those emotions serve me well.

I also had counselling which was a life changer. I even got told by my counsellor that she had never seen anyone so positive about having cancer. So maybe I did positivity to a fault :) ...I wouln't change how I approached it for a second.

So I reckon you're on the right path identifying positivity as the next phase for you. Own guilt first. Let 'him' teach you the lesson, but don't try and fight him. He's there for a reason. And the sooner you accept the lesson then you can move on to letting Positivity prove himself to you. Guilt and Positivity make a good partnership, they keep you grounded but happy and thankful you at least made the decision you did when you spoke to the doctor.

I look forward to hearing what you and Positivity get up to together!! Keep us updated as to what your team's plan is for your treatment x

All my thoughts with you Jane.

Hi Jane I just want to say I’m so sorry for the loss you have suffered. I have suffered such terrible anxiety through having cancer. You have had  to deal with losing both your mum and dad then find out you have cancer. This is all in a pandemic. Please speak to the MacMillian nurses, the number is on this site. I’m sorry I can never remember the number even though I have called it several times. I can say I do get the what ifs sometimes. There might be someone who will reply with better advice than me, the only other thing is does your GP know how you feel ? it might be a good idea to give him a call. Please let us know how you get on. I’m sending you lots of hugs xx

Hi Fidge, sorry to hear about your parents. The shock and grief must have been terrible. No wonder you ignored your symptoms.

I ignored my very obvious symptoms for several years. I knew it was bowel cancer, but have had breast cancer just could not face another cancer. Eventually my lovely breast surgeon wormed it out of me, did a colonoscopy, and referred me..I am now 4 years clear. I think that man saved my life.

Good luck on your journey.

Thank you I love you people on here you make the world a better place for me on what has been a tremendously hard day. My face to face is at 11 in the morning x 

Hi Jane

You’ve had a terrible time with the Covid pandemic and it’s cruel way of keeping you away from your parents. 
The pain that you were going through no wonder you had an upset tummy. 
please don’t blame yourself for not realising what was happening to you. 
I went years caught up in everything going on always someone else needing support. My family used to say stress tum Mum. Turned out 10cm Rectal tumour mum I was at the point I knew I was blocking and then so relieved when the bowel screening arrived. They were fast efficient and so supportive. Mine was a slow spreader. They said that they could remove it and maybe a little chemo. Turned out no chemo needed the tumour is out and I’m so much better. 
I did feel so cross with myself for not going to the doctors and getting it checked so I know how you feel. I felt guilty to my family and especially the NHS  they never judged me for being silly  I think there’s an embarrassment in us all with anything to do with our bottoms and poo  We all need to talk more openly about our bowels  

Try and put it behind you, you’re now in a place where the team will take it over and you can concentrate on being kind to you. 

Keep us updated with your treatment plan

Morning all

Just thought I would update you after my f2f yesterday.

The good news is there has been no spread & they are not worried about lymph nodes. This was the best new so what followed was hard to hear but nothing I can’t take on & I feel huge relief.

So the tumour is a large mass as the surgeon explained that it is natures way to draw warmth from around , so it has drawn close another part of the bowel & has joined to it & is also attached to the small bowel, he described it as a string of sausages.

During the operation to remove he went on to explain they are not able to separate so will have to take all of the mass including clear margins. This makes the tumour a stage 4 on size & I have been told the chances of a stoma are 50/50.

I have to say they were all so patient & lovely & of course when you hear the word stoma it freaks you but I do understand & it will give me my life so I obviously wouldn’t hesitate. I will be booked in with the stoma nurses for counselling & preparation incase & my op will be about 3/4 weeks. Normally 2/3 but because of Christmas it’s a little longer. I have been booked for another scan in 3 months.

The operation will start as keyhole but it may not be possible to remove such a mass in this way so may end up with a larger incision but none of this will we know until the day.

The care & understanding second to none it was just the hour wait to be seen after our appointment time that was a killer 

Thanks for all your support getting me through those dark days of waiting, you were right once you know you are able to tackle head on & prepare, long journey ahead but at the end of the day I will hopefully go on to live a normal life again.

Jane x

Hi Jane

Thanks for letting us know.

So pleased that you now have a plan of treatment  I really think the waiting and worrying is the hardest part  

Once I knew they were going to remove the cancer I felt such relief  

I totally agree with you about the care in place with Bowel Cancer. I have had amazing treatment and support. 

Treat yourself to something nice and make a list of things you might want in hospital. 

Great news . You sound very realistic and directed . So glad it had not spread . You are more informed now and can start to process how to move forward .

Take care ,

Court