Chemo has been stopped due to coronavirus

Hi

Yes I think it could be a post code lottery , I live in London and like you I had a very large tumour that didn't shrink at all with chemoradiation,  the surgeon  had to cut further in to get it out, I shall be forever grateful to him  for this but I also have EMVI and was told at the beginning when I was shocked at six months of chemo was how important it was to have the course. The oncologist who cancelled the treatment and I have never met abruptly told me I had already had a lot of treatment with the chemoradiation and the op ! I'm only asking for the standard treatment which everybody seems to get for this type of cancer so she made me feel incredibly guilty!!  So I now have my fingers crossed for Thursday and hope I speak to someone else

Keep safe

Love Peacock62 xx

Hi Colonilla

I also had two or three infected lymph nodes.  It's nine years since my surgery and eight since I finish chemo.  I've had regular  colonoscopies and scans.  I have recently been diagnosed with diverticulitis, and my last colonoscopy couldn't be completed but  I was referred for a virtual colonoscopy.  I still have some side effects from my chemo  (early onset arthritis in some of my joints and neuropathy)  but it doesn't prevent me from getting on with my life and doing the things I enjoy.

It is still very early days since you had surgery and I understand that this is a very worrying period, but you will be having regular check ups and tests (once everything gets back to normal)  and hopefully all will be well.

If you have worries I would suggest that you ring your Caner Specialist Nurse (could be Macmillan or one employed by your hospital) and chat to them.  You should have been given her/his details when you were first diagnosed if not your surgeon's secretary or the PALS office at the hospital should be able to give you their contact numbers.  Many Cancer Specialist Nurses hold their own clinics and you can often ask if you can have an appointment with them to discuss any worries.

Take care,

VickiLynne

Hello everybody

I had my oncologist appointment last thursday and after some lengthy discussions  it was finally agreed to start my chemotherapy  again , so I had to go to the hospital on Monday for bloods and the chemotherapy tablets arrived by courier the next day. Just thought if anybody is worried about their treatment being stopped it is worth talking it through again with your oncologist, it wasn't easy and was quite stressful but I believe it was the right thing to do, I really don't blame the NHS  team that care for me as they are having to follow government guidelines. 

I still feel slightly guilty at pushing as I've always  adhered to what medics advise but because I was misdiagnosed in 2017 with IBS and it took till 2019 to properly diagnose my tumor,  I felt I needed the best chance for myself

Stay safe everybody 

Love Peacock62 xxx 

Hi Peacock62

I think with your past experience it is understandable you feel you need to finish your chemotherapy. We have to do what is best for ourselves and nobody could ever question you. I'm not too sure what is happening with myself and the remaining doses of mine but I'm in a gud place now even with my ileostomy 3rd nipple. I had IBS symptoms from September through to February before it was picked up and had the scans showing scar tissue blockage in my large bowel just above the rectum. So no more pain and no side effects. So I'm in a place where I'm not even thinking of my cancer.

Stay safe

Mark

Thanks for your reply so glad you are feeling good it's always promising to hear good outcomes.  

I've always been wondering  do you manage to drink a beer from that lovely bar of yours does it affect your 3rd nipple .  

Love Peacock62 xxx 

Morning Peacock62

I basically eat and drink most things the only things I tend to sparingly eat are the ones which may cause a blockage. I do find my output is more liquid after a couple of cups of tea in a morning and if I drink squash. As for the Stella or cider it doesn't make much difference and I'm so comfortable with my stoma i don't usually take any notice on the number of times I empty it each day. I honestly thought it would rule my life as when it was mentioned when I had my tumor removed "it was like noway don't want one of them". Now almost 7 months after tumor removal surgery when I had the stoma it's like it is what it is so I don't allow it to rule me. It may well be my attitude to things which helps not sure but I'm aware of the do's and don'ts and not to much of a worrier. Whether a lot of this is to do with the fact I'm no longer in pain from the blockage which caused me to have the stoma in February not sure as we're all different.

Stay safe

Mark

Well donePeacock62. I could imagine that was a tricky conversation to navigate but it allows you to know you have taken every precaution and as you said difficult to switch the first post surgery talk off in your head if they stressed it was necessary. 

I think it’s difficult for some people to realise how powerful chemo can be as it’s used often in post operative settings but for us to see the way it shrank tumours off the scan was just incredible despite being a bit rough at times .

I hope it all goes well for you . Hope you found the hospital well geared up for safety just now . Also there could not be a better time to start with the infection rate of corona being so much better in London now . You timed this bit very well . 

Take special care ,

Court