Contact with hospital

Hi  and welcome to the Community.

So sorry that you are struggling to get answers and yes this is happening across the UK and across all types of cancers.

My understanding is that people are eventually reviving phone calls from their cancer teams, this does not help you right now but could I suggest that you connect in with the support groups that you have joined as you can talk with people on the same type of cancer journey as yourself,

Hit the links above then introduce yourself to the group and post questions after selecting 'start a discussion' and you can also join in with existing conversations by clicking on 'reply'.

All the very best.

Im really not sure what joining these groups does.  Reading stuff on here and finding out more and more that people's chemo is cancelled and no access to macmillan nurses is terrifying.  it appears that we may not even be granted the dignity of a good death and that many of us may not make it to the otherside of  covid 19.

Im really not sure what joining these groups does.  Reading stuff on here and finding out more and more that people's chemo is cancelled and no access to macmillan nurses is terrifying.  it appears that we may not even be granted the dignity of a good death and that many of us may not make it to the otherside of  covid 19.

Im really not sure what joining these groups does.  Reading stuff on here and finding out more and more that people's chemo is cancelled and no access to macmillan nurses is terrifying.  it appears that we may not even be granted the dignity of a good death and that many of us may not make it to the otherside of  covid 19.

Hi again and sorry that you are not seeing any benefit talking with people on the same journey.

For me, the main thing I have found over my 20 years living and being treated for my rare condition was talking with others who are on or have been in the same journey helped me understand a lot.

Pear support helps understand treatment timelines, how long can treatment be unfortunately be delayed, this happened a few time with me with no Covid and basically just talking with folks who are in the same boat right at this moment.

The challenges in the NHS system is unbelievable but I have talked with a good number of folks over the past few days who have the same type of cancer as myself and they are saying that treatment is eventually happening but it is taking time for their teams to reorganise treatment units and reschedule appointments for this to happen.

I have no answer about not being able to getting through to your consultants apart from keep trying.

I do have a few Senior Consultant friends who are right in the middle of this mess and all have cancer patients.

The main challenge is not that they are cancelling treatments, it’s they don’t have the trained staff to do the treatments as so many of their staff are on 7-14 day lock down due to the virus so let’s look for the staff testing to improve this situation.

One friend said that on Wednesday this week it was him and one Macmillan Specialist nurse in a clinic that normally had 12 staff and would see 70-80 patients !!

Not making any excuses but this is where it’s at but he did say that they was sitting working through their patient lists, phoning them and trying to get some order into the system..... but it was taking a lot of time.

Hang in there, keep calling and do talk with the others in the same boat.

Hi Sylhop I know exactly how are you feel.I had a call from the nurse telling me i will have a phone call instead of face to face appt.When I asked about  if my chemo  will continue she said it will be discussed with the doctor when i will have the appt.on 15.4.So untill then they left me in the dark I dont know what I will do if they cancell it.I had to get antidepressant prescribed.

The "best" thing is some people will tell you to "trust" your medical team and its "in your own interest".Well I dont agree with them.You might or might not catch the virus but your cancer is still there.

Is like telling us "dont worry be happy",the tumors will grow or spread but "be happy" you dont have the virus.Its like cancer is something better than the virus,well is not.

You are so right and I feel that someone at lasts gets me. Instead of telling me to join this group ad everything will be alright

I can feel one of my tumours the one between my colon and my liver. Its like having a living alien inside of me and because I can feel it it doesn't go away.  I may or may not contract corona. Ive bee around it my daughter has had it and come out the other end.  But I sure as hell know that my cancer will kill me if not treated.  

Last time I had cancer (June 2018 in my bowel) they told me I couldn't have it and it was fast growing and nearly killed me.  I asked to be monitored more often than yearly but nobody listened and they haven't listened again.  My appointment initially wasn't until June, but I knew

All I want is good death when the end comes but without being in touch with anyone how the hell is that going to happen

To the Highlander

The difference is your being treated and living, some of us may not be that fortunate

Hi Sylhop i fully understand you although others just criticising me.I had breast cancer 2 years ago apparently was cured.Last year had yearly mammogram saying everything was ok.After started coughing I went for axrays and in May I was diagnosed with Breast cancer spread in to lungs liver and kidney.Well I thought thats it.I started weekly Paclitaxel chemo i had skin rash but it has gone and started suffer anxiety but i didnt have any other side effects.Before I started chemo I couldnt even breath or walk.Now i am back full fitness was thinking even go back to work.Last scan in January showed no mets in.liver and in my kidney anymore and the tumor is almost untouchable in my breast and the lung mets are shrinking too.So you can imagine if they stop my chemo I can start from 0 again.The pain in my lungs was so agonizing I dont want to have it anymore.I dont have any support from my cancer nurse either.When I called her regarding my skin rash she couldnt help me or last time she didnt even call back.Some people seems have different attitude regarding treatments delayed or cancelled but evsrybody is different.I cant imagine to sit at home for another 3 months and wait for the tumours growing or spreading.I used to be so positive now everything is black.

Sorry for the long reply just wanted to say i understand how are you feeling

Just as there is no right way to react to a cancer diagnosis, there is no right way to feel about the various support options available to us.

Some people find enormous value in peer support.   Some people find none.  Most, I  suspect fall somewhere in the middle and take what they need from the site while leaving the rest.

One of our largest  hospitals here currently has 100 staff  in self-isolation following a cluster of covid-19 cases in their haematology and oncology ward.   My infusion centre attend is currently delivering roughly half the treatments it would normally, due to the extra measures being taken to protect staff and patients from the increasing risk of contracting the virus. 

Nobody believes these situations to be ideal, but neither are people able to suggest viable alternatives.  The unintended consequence is a whole lot of people feeling like they're falling through the cracks at best, and at worst that they have been cut adrift.