Anyone affected by delayed treatment

Hi Janet 

You're in good company, I don't have money to go private either 

Don't know if it was you and I meant to say at a later date, but someone mentioned that they were not in the same class or something like that, neither am I but that doesn't matter. We all have an incurable cancer and cancer doesn't distinguish between classes or intellect. 

Hope you can get better treatment, you deserve better.

Tvman x

Hi Janet500     I was in hospital recently and 75% of the patients who were in there were due to there cancer treatment being cancelled due to the corona virus. It was terrible to see these people in so much discomfort and pain and the ones i spoke to said how angry and disappointed they were with the way they felt they had been treated.I can only hope like all of us cancer patients that thing get up and running as soon as possible, but i dont have much hope that it will. I went to my oncology department last week, and were there would of been 40 to 50 people waiting for radiotherapy treatment there was 1 person, and in the waiting area to see an oncologist that normally seats 40 there was only ME. I hope you get the treatment at UCLH asap best wishes xx

Hello wino I hope you are ok.Your experience must be terrible to know to see al these patients because of the cancelled treatment.I have read about the backlog of patients too.

I dont know why they putting the people through all this.They have capacities now with all these new hospitals so they should move the covid patients there to free up the normal hospitals.I am goinf to ask my boss if our company has any physio I can use.I dont have money but I think will have to borrow from my mum to pay for the physio although have been regerred who knows how long I will have to wait.

Now i feel bad because my weekly chemo continues I cant imagine what would i do if they cancel it.This is all wrong.

Janet

Hi TvMan thanks for your reply.I think the referral now will take ages.I spoke to my mum she will borrow me some money so I will try to find a private physio meantime.I am worried I will loose my right arm.

I dont know who said about the classes but anybody can get cancer poor or rich.Only rich people have more options to go private or abroad for more advanced treatments.

I was waiting for this lymphoedema clinic since January but if I would go private probably would be seen few days after referral.This is what makes me angry too.

I have had 2 phone calls in last 12 weeks from my oncology team-- I asked my doctors surgery for my B12 I have trouble with breathlessness. He said come back in 3 months.!!!!!!!!!!!.   I am OLD with Breast cancer now in my Lungs also Lupus .    I later got a blood test before having a scan next week-- --trouble is the scan wasn't booked I had to chase that up .  My Lupus doc has been a help, hope he can help with the pain I now have.  We have no covid on the I O M after being closed borders -- I know that's good but at what cost..

C J x x

Hi Janet, I am so sorry about the way you have been treated. If your oncologist was referring you to UCLH through your GP then it might be worthwhile contacting your GP first thing Monday morning and explain to him/her what's been happening. After all your GP is responsible for your wellbeing and it would do no harm to remind him of that. Your mum shouldn't have to borrow money so that you get the treatment you need. If you get no joy there, contact PALS as others have said or your MP or your local papers. 

Please don't give up, make a nuisance of yourself, if that's what it takes! I'm afraid I am one of the people you don't like because I have a great GP & oncologist. However it wasn't always like that with the oncologist, as after a few months, at the start, I wrote a letter of complaint and the onc actually thanked me in the end. Every time I went to her clinic, we had to wait upwards of 3 hours. After my letter, she was given extra clinic time which she had been asking for seemingly for over a year, because she had far too many patients to see in the 3hour clinic time, so when the clinic ran over the time, neither the onc or the specialist nurse got paid overtime which is ridiculous! Good luck!

Hi CJ  As you will see, I have just replied to Janet on this thread and I'd like to give you a similar reply! Just don't stand for it, that is not the way patients should be treated! Do you have a cancer hospital on Isle of Man or would you have to go to the mainland? That's what I am unclear about! I also don't know who's unshielding programme you follow as England,Wales,N Ireland and Scotland are all on different paths! Regarding your B12, my friend gets this regularly but at the start of Lockdown she was told she would have to wait. After 4 weeks, I advised her to call her GP as her breathing was getting worse. He put her on steroids but the following week the District Nurse went to her house to give her the B12. 

Do you know when you get the results from your recent scan? Maybe once they have that, things will change. I certainly hope so.

Thank you Ann I will call my GP on Monday.I am already on antidepressants and this luck of care brings me down worry.Yesterday I ended up crying.

Take care

Hi CJ,

I am in North Yorkshire and following a course of B12 injections due to very low levels I was then put on regular three monthly injection.  I was called in on May 1st during the lock down for my injection which although safety measures were put in place took a minute or two.  We were asked not to arrive early but present at the door at the time of our appointment, we were asked the covid screening questions, given some hand sanitiser.  I was directed to a chair outside the room where the nurse was working and was called in almost immediately.  The usual ID questions asked and I was out in about 30 seconds.  On the way out they gave me my next three monthly appointment and I was out.

My sister also has B12 injections and hers have continued through the lock down.  Prior to them accepting that she needed regular injections the procedure was that when she presented they would take a blood test and send her away for three months to see if she improved.  She went through hell for three months with no energy and in a very low mood before she went back and they gave her the injections.  This happened several times before they finally accepted that she has chronic anaemia and she now gets the regular injections.  I believe it may be NHS policy so you might need to your GP about this and see if this is a policy and in which case what criteria do you need to meet to access the B12?

If you have a cancer care nurse they might be the best person to talk to about what you can do to make things work better as even if they aren't at your GP surgery they will be able to access them and find out why you are not able to access the injections.

I hope that you can get this resolved as I know how draining a B12 deficiency can be.

love and higs,

Gragon x

I am on B 12  3 monthly. , i was feeling bad so rang to see how i could get it done. The nurse who rang me back said wait for next 3 months-------no way did he look at my record to see the position i was in, or surely that wasn't a good answer for me.I am also waiting for another chance of treatment, second cancer was found in March 2019 and i've only had 3 capecitabine ---not work-- then 1 of E/C which floored me. Very difficult when i live alone as well. I am in The Isle of Man so come under Liverpool Specialists.  C J x x