Cancer Research UK main site
  • Replies 3 replies
  • Views 411 views
  • Users 0 members are here

Awaiting mums official bowel diagnosis

Danzi
Offline

 

Hi everyone 

 

I have been reluctant to post anything because it makes the situation seem more real. But I think enough is enough. This is a complaint as well as a way to air my emotions! On Tuesday 17th of May 2022, I attended the hospital with my mum due to two weeks of stomach cramps, weight loss, change in bowel habit and nausea/sickness. This was after her GP had felt her stomach and was concerned. Upon waiting in A&E they took a blood and urine test (something we never found the results out for). The Dr then did a stomach ultra sound and said everything seemed fine but he would be doing an urgent referral for bowel cancer given the symptoms.And this is where it's all gone horribly wrong. A two-week referral this was meant to be? Well it wasn't. She was contacted the week of the 23rd of May 22 to come in to see the Dr the following week. A day before her appointment which was supposed to be the first week of June 22 she recieved a letter to say it was cancelled. Upon contacting the department they said the Dr was on annual leave and out of the country. Do they not understand the mental preparation it takes to see a Dr in the hospital because they suspect cancer? 

 

Moving on a further appointment was made for the 8th of June 22 over three weeks later. The DR examined her and explained she needed a CT on her abdomen. The CT was arranged for the 17th of June 22.  In which I had to chase up the results myself. On the 22nd of June 22 upon contacting the department I was advised that a results review meeting had been booked for the 4th of AUGUST! The 4th of august 22?  Please just take that in, a result reviews meeting for 2 months later for a person that has suspected bowel cancer? Unacceptable and just outrageous. After going back and forth, back and forth they moved the results review meeting to the 28th of June 22.  After chasing this up again on the 28th, she recieved a call the following day where the DR stated she needed to go for a Chest CT on the 30th of June 22 and a colonoscopy on another date. 

 

 A colonoscopy took place on the 7th of July 22.  We informed the reason for this was because something had been seen on the right side side of the bowel. 

 

After the colonoscopy we were informed it was a 95 percent chance of cancer and the blockage in her bowel would need to be removed at some stage by an operation.  Oh and the biopsy results can take 10 days. Again still waiting.  

 

So here we are 64 days in since the referral was made. No official diagnosis, no results of the biopsy or chest.  Whilst my mum continues to lose an excessive ammount of weight. She always has some sort of pain, constant diarrhoea,  nausea and weakness.  It's disgusting and upsetting the way this has been handled and I really hope to god we are the minority and not the majority. 

 

Going back to the 4th of august situation. Imagine if this was a person that didn't have any family and they had to wait until the 4th of august maybe to hear something. Whilst they are in pain, no idea of what's going on? It's pretty damn disgusting I would say. Luckily she had me to chase. 

 

Unfortunately my experience and close friends and family experience is pretty negative. But I will not allow the delays to impact my mothers health and something needs to be done about this. 64days.. not acceptable and not right. 

 

I was given details for the Colerectal nurse. And I had to beg them to tell me the results of the other CT and they told me it was advanced they can see something on her liver and lung! 

 

We’ve made a decision not to say anything to my mum until they’ve done there meeting which is meant to be next Tuesday because I know this will upset her and she will have questions I don’t know how to answer. I am an only child and if it wasn't for my husband I don't know how I'd still be strong right now. 

 

In my eyes she is slowly deteriorating and the nurse, gp and 111  just don’t seem to care. 

 

I understand we have to wait for our appointment. But this has been going on for months. All her weight has dropped significantly since her first hospital visit. She was 8 and a half stone.. she is now 7 :/

 

I have read many chats and I know this must be a minority as there are so many positives from other people. Unfortunately my mum just doesn't appear to be that lucky 

  • Offline

    Hi Danzi

    I'm really sorry to hear of your poor mum's treatment.  And can appreciate how very worrying this has been for you and your husband too.  It was my understanding that once you're in 'the system', things start to move fairly quickly.  And it doesn't sound good that your mum had to lose more weight during this time, also a worry.

    I have breast cancer, not bowel, but if I can help at all until someone with bowel cancer experience can jump on here and help you, I think they should be starting a treatment plan pretty soon.  I've met the wife of someone with cancer in more than one area.  She told me her husband's Oncologist (cancer Dr) was concerned as her husband was spending many months deliberating on which area he wanted treated first and doing his own research.  But she said they were finally starting to agree a plan of action.  I appreciate you wanting treatment to have started by now and being frantic with worry.  Surely at their meeting on Tuesday they'll be deciding on a treatment plan and you'll hear when that starts on or shortly after Tuesday.  You're given a cancer team which is made up of different specialists.  I'm assuming that is who will be at the meeting.  Your mum might be given supplement drinks to get her weight up a little.  I've seen that done before when I stayed in hospital when weight loss among other patients was an issue, sorry I can't advise more.  And if it wasn't only a few days away, I'd have recommended you contacting your mum's GP Surgery to ask that a District Nurse visit your mum meantime at home to advise on the weight loss.  You could still ask for that, it can't do any harm.  I appreciate you've contacted your GP and nurse and I'm quite shocked that they've not helped.  Perhaps they're looking to the hospital for expertise which is often the case with cancer.  But you should be able to call and ask for a home visit from a District Nurse and say you're worried about your mum and that sudden weight loss is the issue.  Keep it vague.  You can explain why once they send somebody out.  Say she's too unwell to manage in for an appointment as that certainly sounds the case.  My own mum got that although it wasn't cancer.  I really don't think your awful experience is typical of the NHS.  

    I wish you and your mum all the best for getting treatment quickly now.  She'll appreciate having a daughter like you.  A worrying time but try to stay strong for her.

  • Offline in reply to Optimistic2022

    Thank you so much for your reassuring message. I do think we are just in an unfortunate position where things are slow but I also am fully aware waiting is clouded by the emotions of all of this too!  I'm hoping we get a call next week after the MDT so we can get the treatment started. I appreciate the nurse told me exactly what was going on and what the diagnosis is going to be I just feel awful my mum is in the dark and I fell helpfulness as she is not well. They did prescribe some fortisip after the colonoscopy but it hasn't doesn't much. I do think once we have the appointment things will move forward a lot quicker! 
    thank you and I hope you are well and have support too! 

  • Offline in reply to Danzi

    Since my last post I spoke to the colerectal nurse. She advised a MDT would take place on the 26th (yesterday) and can only advise drinks she can take to help her energy which I have been giving her anyway!  I also asked her to be frank with me and tell me what the results of the CT chest scan showed. She confirmed that it is showing in her liver and lungs. Therefore advanced. I haven’t told my mum yet because this is the drs job and I don’t want to upset her without knowing the plan.

    I spoke with the general surgery team yesterday who stated a dr would call her yesterday or today for her face to face results appointment. Nothing. All they could tell me was it says “considering chemo”

    I just can’t get my mind round why and how this has taken so long, if she does have chemo.. how will her body cope when she has already lost over a stone in weight in the last 2 months! If this had been quicker she may have had more strength.

    I complained to pals last week and they advised I complain to the Bart’s health department but await the MDT. Considering she has not been contacted I made a further complaint today in the hope someone will listen..

    Out of all this she still doesn’t t know her diagnosis. How can I tell her when I don’t know the answers or the plan going forward. She’s only 63 and it just breaks my heart.

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.