Mum is really struggling

What a stressful time, this bit is always the worst. Has your Mum had any other scans done or booked to be done? They usually do a CT scan to check for spread and then an MRI of the tumour area to see in detail how far it extends. Then it gets discussed at the MDT meeting which are held regularly once a week at my local hospital once all of the scan results are back so they know what they are dealing with and the best way of treating it. I had both scans within 10 days of the colonoscopy, results took 3 or 4 days each as classed as urgent, discussed at the next meeting and I had a phone call from the specialist nurse within a couple of hours after the meeting to tell me I was being referred to the surgeon to be assessed for surgery as they felt that they could get clear margins.

So yes you should have heard something I would have thought. Could your surgeon be on holiday? Have you tried his NHS secretary at the hospital? I think you have to keep chasing this. This is the worst bit but bowel cancer really is very treatable and it may not help much but would your Mum come on here to read some of the many success stories of people of all ages. Court's mother is an outstanding example of this. I expect she will be along later and you can read her profile which may offer hope to your mother.

Nicky 

Hi ,

Oh so sorry to hear about your mum struggling so much . Tell her to hang on in there as things get pushed back a bit around holiday times . Whilst it is  normal to wait a bit the MDT meetings that include the liver surgeons can take a wee while longer in my experience but once they make a decision it really is full steam ahead .

In terms of pain I would get back into her Gp to sort that out . Also ask the GP to assess her mental health to see if she needs a wee bit of assistance to get her over this rough patch . It’s too much to place that all on your shoulders no matter how great your love is . Also you could look into a cancer centre like Maggie’s or ask your GP if they can access counselling for her . But Maggie’s May be able to support her if you have something like that nearby .

I am not sure if you tried the Macmillan helpline 0808 808 0000 but they could chat things through with your mum at an emotional level to give her some support . 

If you click on my user name you can read my mum’s story . She is still here doing well ten years after a spread to her liver . If that’s what your mum is diagnosed with there is a lot of treatments available if she meets the criteria. However a lot of people have liver cysts and it all turns out to be nothing .

I hope you get some support soon . Even an appointment gives you some structure. But I would really involve her GP to get things moving .

take care,

Court 

Hi Nicky,

Yes mum has had CT scan with dye and the surgeon then saw her in appointment to say it might have spread. The last thing he said was that a liver specialist would be called to the MDT meeting and decide next steps. Since then its all gone quiet. We are trying to get some quality time together in before she starts treatment. You sound like you have been incredibly brave about your diagnosis and treatment, and I hope you are over the worst? Thank you so much for your comforting words....as mum said recently, cancer is a very lonely place to be.

I read your earlier reply post & see that your mum is 71yrs....which is still somewhat young; so I am saddened to read your post here, & the feelings that she is experiencing right now. I am 70 yrs, & likewise, had never had any previous illnesses that posed a problem to me prior to my bowel cancer diagnosis earlier this year....which was also a tremendous shock to me.

I read this Forum everyday & see that everyones experiences/symptoms are all so very individual...yet also are dependent on the region we live in & the GP's we have....Yet also, the site where the tumour is based is very indicative of the treatment plan that ensues.

My personal story started in May '18....Slight bowel changes, poo looking sludgy & a bit different colour, & a dull ache in lower left bowel. Went to GP...but I was reluctant at his immediate of a Colonoscopy (didn't like the sound of it.) So...I had blood tests, a CT Scan & a Poo Sample...all normal, but symptoms remained.

I then had a CT Colonography on March 7 this year. Saw the Consultant Surgeon a month later who said he saw a 'shadow' on my descending bowel & arranged for the dreaded Colonoscopy (it's really not that bad!) which I had on 15 April. However, Colonoscopy couldn't be completed, due to the stricture, & I was told shortly after that they thought it was a tumour, but couldn't be certain & wouldn't know until after a resection Op. This was followed by a CT of Thorax on 29 April, which showed that area was clear.

From then, things speeded up considerably, & I had surgery to remove the tumour on May 16 this year. I was in Hosp.4 days. You are on strong medications, so nothing hurts.....you just feel a bit sore for a couple of days when walking. When I got home, I needed no painkillers...just a daily blood thinner injection for a month. Now, I feel very normal physically.

But of course, the mental toll is far harder to deal with. In the 3 weeks leading up to my Op...I was in a strange alien place. I didn't want to see any of my friends. I retreated into my bolthole...but counselling with Macmillans is easy to arrange if needed!

Tell your mum that bowel cancer is very treatable; & if it has spread to Liver, it also is. The surgeons do an amazing job.....& life is always worth living!

Your words are very kind and comforting.....and I acknowledge that you must have had very dark days, but were incredibly brave and found the strength to get through. My mum is very blessed in many ways. I have had a bit of a rough time with lots of ops...first major back surgery at 35....then about 9 ops on a very stubborn fistula which had connected to my lower bowel, then most recently two years ago, a fair sized fibroid which had to come out. My poor mum has watched me go through it all, whilst managing to stay out of hospital and away from the drs. Now at 47.....having had a current run of good health ( though had a full run of blood tests today as I'm getting lymph nodes popping up and down....Dr thinks it's stress) I'm having to witness mum face her biggest fears! I sometimes wish I could swap places with her , which is awful to say, but I'm quite black and white about surgery. I can honestly say, I have enjoyed all my ops...I quite like feeling like a princess by the nurses, all the nice food, and being tucked up in bed....though I have gone private. My fistula surgeon is the one who will carry out mums bowel op.....we have got to know him very well over the years...and he knows my bottom better than I do and he is very kind and lovely person.

Mum will be seeing surgeon to discuss MDT outcome this Thursday.....I hope I can get her there with a couple of g and ts...then at least we can start planning the days ahead.

It is lovely to connect with you.....stay in touch!

Hi Court

It's so lovely to hear from you, and your experiences. Mum now has an appointment to see her surgeon on this Thursday so she will know what comes next!. 

Trouble is getting her to hospital as she is frozen with fear......I have given her three choices....

1) Several large gin and tonics

2) I will contact our church vicar who can hopefully accompany her to the hospital.....( He is amazing and did offer to come with us before and is in constant contact with me).I would like to see the look on the surgeons face if this happens!!

3).I will hire a bulldozer with a wrecking ball, and literally take the house down, so she changes her mind about going to see the surgeon.

She has got me through all my ops, and challenges.....so now it's my turn to get tough on her!!!

Will let you know what happens.....watch this space!!

Blessings to you and mum!!

Lovely to talk to you also. Sounds like you have been on a very difficult path yourself...re Ops. Seriously though 'You liked the Ops? Can't agree with you there.....My first Major Op. last May & having to stay in Hosp. for 4 days.....I personally found dreadful. Not physically so much, but certainly mentally! Coming round after anaesthetic & being totally out of it...then Fentanyl drips...feeling like a zombie for a couple of days - not pleasant! Then, the awful food & cups of tea....The noise & sleepless nights & having my BP measured every 3 hrs! No - it was a bad experience for me. However, I'm grateful to be alive & feeling reasonably well now....& so of course, despite the awful weeks leading up to it,those awful 4 days....It was all worth it to be where I am now & enjoying nmy Sauvignon! Tell her it's worth it x