Our lovely mum just diagnosed with advanced bowel cancer

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

Hi Porthtow

Your mum has a strong support team around her . Welcome to the forum . I have linked in a booklet that will give you some insight into how oncologist treat bowel cancer that has spread . If you click on my user name you can read how my mum navigated a similar diagnosis with her team . It really does depend how responsive your mum is to treatment . There is a sub group of patients despite a difficult diagnosis actually respond very well to chemotherapy and use it as a maintenance therapy . Some are on their fifth and sixth year . Obviously not all people respond but depending on your mum’s cell type they have also got Immunotherapy treatments that was not available before .  

However you are correct it’s a very difficult time when you only have part of the information and not the full plan . It does ease when a good treatment plan is put in place and this may surprise you but we continued to have good times . We had to be more flexible , plan within the next few days and where possible . But around treatments there were still good times . 

Bowel cancer is more fortunate than some other primaries as it has a lot of different treatment combinations for chemotherapy depending on the cell type . Has your mum got that information yet ?

We are here to support you and your mum . We have a helpline for any questions that come up and a “ask an expert “ section .The helpline is 0808 808 0000.

I hope your mum gets a good plan and stabilises the spread .

Take care ,

Court 

Hello Court

Thanks so much for your reply and taking time to respond. I showed it to my sister, we read it together.

Mum doesn't yet have any details re a treatment path or the type of cancer cells. This is the bit we're struggling with (amongst everything else!) She was diagnosed on 18 March, sent home, with the promise that things would move quickly from now on in terms of next steps. Admittedly she was brought in last Tuesday for an upper body CT scan as per her discharge letter from A&E, but we're still waiting to hear if the MDT meeting has taken place and when her appointment will be to discuss next steps. We were told it would be within two week of diagnosis but our minds are doing overtime....two weeks is a heck of a long time in terms of what's going on inside mum's body. 

We're also concerned about mum being on her own if treatment is offered i.e. when she goes in to hospital for treatment as we're away that restrictions are still in place in terms of family not being allowed to be with them. We hate to think mum would be going through treatment on her own (if offered). 

Anyhow thanks again for your reply, it was encouraging to read.

Hi Porthtow

I would think more in terms of a month to see things moving and it’s good she has already got her scans .Pre covid they were normally reported around the two week mark and if that lined up with the MDT meeting then things could progress . There is a meeting to consent to chemo and go through the side effects /protocol. My mum’s oncologist reassured us it had been there for a long time and this time frame would not cause any real impact . He even encouraged her to go for a holiday . That came as a real surprise to me as I imagined they would have her in the following week with chemo attached ! However just when you think the system has ground to a halt it suddenly bursts into life and a good routine is established .

Pre covid in our unit you were only ever allowed in for the first cycle then the staff wanted to take it from there . 
https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/bowel-colon-rectum-cancer-forum/221768/chemo-care-top-tips--

This thread might help you prepare practically for chemo . It covers most side effects . Immunotherapy has different side effects and I may need to get a separate thread for that . However some really good pointers to work with .

Getting them to and from chemo is still an important aspect . The staff are amazing and will take good care of your mum . Once you have a couple of cycles under her belt you will gain some confidence in the process but I can totally understand . Covid has altered so much . They meet with the patient before each new cycle to take bloods and review how treatment is progressing .

There is some research ongoing about the benefits of even a small walk when having or preparing for treatment . 
I will look up the leaflets . I need to pop out just now but will do so .

Take care ,

Court 

Hello Court 

I just wanted to give you an update on our lovely mum. She passed away just five weeks after her diagnosis. The MDT meeting took place and we went in to discuss the results. Despite being told initially by A&E that it was likely she would be offered palliative targeted treatment, when we went to the appointment, mum had declined drastically and we had to borrow a wheelchair from reception. Having assessed mum visibly two weeks after diagnosis it was confirmed that she wasn't well enough for  biopsies, surgery or chemo. And that even if she did want it, it would only give her a couple of months.

Sis and I cared for mum around the clock at home until she passed on 22nd April. There was absolutely no Macmillan support in our area due to staff leaving but the NHS District nurses were amazing. 

We're devastated at how quickly it took mum and she must've been so very poorly inside.

Dear Porthtow I'm so very sorry to hear the sad news of your Mum's passing.My heart goes out to both you and your Sister ,You were a wonderful support team to mum,and it was obvious that you loved her very much.You looked after her from the beginning,and did all you possibly could,to make things easier for her.

Please accept my Heartfelt Condolences.I am keeping You, Your sister and family  in my Prayers.God be with you all.Love Belzi.x

So sorry to read that Porthtow. She sounded so poorly towards the end and I am sure she was comforted by your love .

I also hope you and your family are surrounded by love at this time as you come to terms with her death .

You loved her deeply 

Take care ,

Court 

I'm so sorry for the loss of your mum. I am at the same stage of your first post with my mum. The rapid decline is such a shock. You must be in shock, take care, again sorry for your loss. 

My heartfelt condolences to you & your sister.. your mum sounded a strong courageous lady . I know the love and support you gave her would’ve carried her along ..take care both of you ..hugs xx

Hi I'm.so sorry to read this post I too have just.lost my beautiful mum on the 11th April I cared for her since January she too was terminal since July she just reached her 88th birthday 5th April horrible evil disease really is mum was so poorly deteriorating before my eyes she passed at home where she chose to be with me by her side x