Waiting Waiting Waiting

Morning Jupiter Jo 

I’m so sorry that you’re left waiting. I don’t know the timescale for Chemo but I know that the NHS are struggling to manage with staffing , flu  and Covid  and Bowel Cancer is slow 

I found the waiting the hardest part then once told what needed I wanted that yesterday then there was a cancellation in my preop and I had a total meltdown! 
So I can understand how you feel 

Sending you a hug x 

Hi Jupiter Jo 

Honestly I don’t think you have done anything wrong at all . The NHS is groaning in a way I have never experienced it before . My mum has been in the system for 13 years as a stage 4 patient with the same trusted oncologist for ten of those years .

She was supposed to get scanned in Dec with a follow up appointment in Jan . The scan has not come through until the day after her appointment was supposed to be . Need to cancel that now but never seen it quite so bad . The staff must be pulling their hair out .

However it does grind into action .

Worthwhile saying you would be happy to fill in any cancellations if they come up .

Might get you started a wee or two early .

Also speak to your GP . 
Our helpline staff would be happy to chat this through with you .

0808 808 0000

Take care ,

Court 

Good Morning Jupiter Jo

im at start of journey in the sense of appointments, scans etc to find out  my health status . So I can totally understand where you are coming from ,, I’ve had same appointment cancelled 3 times in one week!! Via phone calls and it certainly knocks confidence.

I decided to be bit more proactive with my care and made polite phone calls direct to referral services & secretaries.. told them to add me to a list or flag up my record to add that I’m available for cancellations at any sites.

Hi Jupiter Jo.

I defo agree with others - call or email them asking to be offered any cancellation slots.

If it's that your consultant oncologist is away/not at work, may also be worth asking if another consultant could see you 

Good luck and if you can, try and use this time to do lots of things you love. The time before treatment starts is so very precious and it will help reboost you ready for the journey ahead.

https://www.macmillan.org.uk/cancer-information-and-support/treatment/preparing-for-treatment/physical-activity-and-cancer
Just following on from CrumpetsOrToast  this might be a way forward . Something to focus on whilst you wait . My mum has started some small changes .

Court 

Dear Jo

Read your blurb. A 15cm tumour presumably is to large to.operate and remove right now. No mention of mets so you are very lucky and hopefully the situation is contained. 

A medical and clinical oncologist would participate in the diagnosis that was prepared and delivered to you.

If your oncologist is in the latter category then additional scans to map the issue might be required while securing time slots for 5 plus weeks of chemo radiation.

Frustrating for you but its long haul stuff not a sprint.Some areas are better resourced but not sure of your location so will not offer an opinion there.

The main thing now is to stay healthy in order to fly through months of treatment comparatively unscathed.

Best Wishes

Hi Jupiter Jo ,

I empathise with you. Like you I have been in limbo for the last month. I learned from this forum that the 'wait' is one of the hardest parts. It's such a knock back when time frames are not met. My case wasn't discussed at the pre Christmas MDT as planned for some reason & no MDT between Christmas has added a further delay. Hoping they discussed me today, I was on the list again & I will enquire tomorrow so that my weekend has hopefully a little less limbo knowing I could be a next step nearer. I hope you get something tangible to be heading for very soon.

Wishing you all the best,

B

Hi,

I was diagnosed end of August I’ve not started any treatment yet xx

My husband finished his chemo/radiotherapy treatment 2 weeks ago (5 weeks/5 days a week chemo/radiotherapy). At the beginning it felt like wait, wait wait. My husband had a sigmoidoscopy, blood test, CT scan and xray done and found out after two weeks that the sigmoidoscopy test had been inclusive and had to be done again.  He waited just over a week and then had the test done again, but still had to wait another 2 weeks for the results and was told he had missed the MDT weekly meeting cut off date by 1 day so he had to wait another week to find out what his treatment plan was going to be.  Waiting  to see a consultant was approximately 3 weeks.  He was told his radiotherapy and chemo would start 3 weeks later as the radiotherapist need that amount of time to put his treatment plan together.  After this everything seemed to be organised and put in place so you don't feel forgotten.  His radiotherapy did start 3 weeks later and on the first day they gave him his  5 week appointments schedule, including 2 telephone calls with your consultant to see how you are getting along,  a couple of Macmillan nurse meetings in the radiotherapy department, a a couple of telephone calls with them to see how you are getting along/answer questions and social services telephone call to see if you will require any assistance.  He was also sent an information pack in the post with 5 blood sample weekly requests and a 6th one for when the consultant asks for it at the end of your treatment before the operation.  His first week chemo tablets were delivered to our house the day before he had to start taking them and a cancer nurse called him to explain the treatment/answer questions.  Each week he picked up his chemo tablets t from the cancer ward next to the radiotherapy department.  After he finished his radiotherapy and chemo  a letter arrived 2 days later informing him of the date of his CT scan to see if the tumour has shrunk.  He was told when he saw the consultant the CT scan would be 8 weeks from the date of his last radiotheraphy treatment and the letter with the CT scan date was that.  They leave it that long as the radiotherapy/chemo carries on working after your treatment has ended.  From experience it was very stressful at the beginning, but once he had his appointment with the consultant everything is quickly put in place.   Two things the consultant told us was to buy a thermometer to monitor yourself for infections and drink a Yakult yoghurt drink every day to fight off infections  I hope this helps.

Hi,

I enquired how many MDT meetings they have had to discuss my case and was told only one in 5 months I don’t know if this is normal.