Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

What next.

Shal1969
Posted by

Hi all

Sorry not been around for a while but things have gone a bit haywire. I started a new treatment called Regorafenib in June which is the last treatment available for my cancer at the moment. It is a 4 week cycle with 3 weeks on and 1 week off.  On the 3rd week I started to feel breathless so when I went back to clinic my Oncologist sent me for a echocardiogram.  I had this test on the Wednesday and on the Thursday the Oncologist contacted me direct to told me to stop taking the Regorafenib immediately as scan showed damage to my heart and he prescribed a GTN spray.

I was referred by my GP to local Cardiology on a 2 week urgent rapid response pathway.  After 2 weeks of not hearing anything I contacted the hospital and was told that the appointment would be between 8-10 weeks!!! During this time I am unable to have any treatment to control my tumours. Needless to say I complained.and after numerous phone calls and expedited letters from my GP and Oncologist I got any appointment yesterday for next Friday.

This past week weeks have been a whirlwind and I am struggling a bit to cope as on top of all this I have had to leave my job this week due to my ill health.  Just hoping now for a bit of good news.

Hope everyone is OK as we can be.

Shal

Shal
tvman
Posted by

Hi Shal

Wow, what a whirlwind of woe, of problems! You couldn't make it up! My treatment also has to take into account my heart condition. I had a heart attack 7 years ago and heart surgery about 5 months after. I was told afterwards that I have at least one artery 50 to 60% blocked. The stent that was inserted at the time has a lifespan of around 8 years, so I'm on standby for heart problem! 

I also had to leave my job due to health problems. When I was diagnosed in March 2015 I felt fine physically but of course there is a mental aspect to deal with, sometimes I felt fine, other times I had the occasional meltdown. It was only when, 3 months after, I was diagnosed with spinal stenosis that back pain became an unwanted companion for my cancer, I made the difficult decision to stop working. My GP and Haematologist were both urging me to "stop work and let my body fight the disease", so there was joint relief with a promise from my GP that the necessary paperwork for benefits would receive great attention. 

How do you feel about leaving work Shal? Will you miss the camaraderie and contact with colleagues? I really missed the daily chat and friendship. Now I am on my own for hours. What I used to do was to go out and visit former customers who were ill, seriously ill but that was unsustainable because it took a lot of my energy when I had so little. 

Life throws you a curveball when you least expect it, Shal.

Take care Shal

Tvman x

My philosophy is simple, love life and family.
Shal1969
Posted by

Hi Tvman

Sill early days as only finished this week. My job was in the NHS as a clerical officer and I’d been there nearly 20 years and luckily I’ve been able to claim my NHS pension early as I’m only 50. I’ve been off sick this time round since last November so things do not feel any different and as time goes on it’s going to be really weird. I’m going to miss my colleagues and the routine of getting up on a morning and going to work and although my job was stressful at times I’m going to miss that too.

Going to have to find something to do apart from hospital appointments (had about 30 so far this year) and the lovely people at Macmillan at my local hospital gave me details of a day therapy unit at the local hospice where people can meet up have a coffee do arts and crafts and have things like reflexology,raki and other holistic things which I think I’m going to give a try.

Medically wise hopefully if all goes well I’ll be able to go back on my treatment fingers crossed.

Take Care

Shal
anndanv
Posted by

Hi Shal, I'm so sorry to read the drug has caused heart problems but can't believe you are having to wait so long for a referral to a Cardiologist! Two weeks is bad enough, especially when you have to stop your cancer meds but how can they justify 6-10 weeks, it's crazy. I'm pleased to hear your GP and Oncologist are trying to get things sorted for you, I hope the wait is not as long as they say!

Regards leaving work, it's hard at first to imagine you will never be back there, especially when you have been off ill for a long time! Just be careful as your mind can play tricks on you and you feel you are still off sick. Then one day it just hits you, so forewarned is forearmed!  I know that's what happened to me. At that time I was told about the Day Unit at my local hospice but I decided to leave it for a while. Probably in denial but did go about five or six months later. The staff were terrific and the others who went were very friendly. I wished I had gone when it was first suggested. I had Reflexology, Acupuncture and Reiki as well as going to a gentle movement class!    Hopefully you will give it a try. There are also doctors and councillors available to talk to if you need them. Good luck and please keep us informed about when you get your appointment through! I do jigsaws on my iPad to keep me busy and there are loads of free apps you can download with games, crosswords, craftwork etc. It's good to keep busy. I also have a Kindle and read a lot nowadays!

Love Annette x

daloni
Posted by

Hi

Goodness me, what a whirlwind! It sounds like you’re between a rock and a hard place. The treatment you need is making you too sick to take it? 

Giving up work can be so hard. I had to give up as I just didn’t have the energy any more. I was a freelance journalist and I miss the intellectual challenge, the people, the writing, the getting paid. I still struggle with the question “and what do you do?” that so often comes up. What do I answer? I always defined myself by my work so it was a loss of identity too.

On the other hand, I don’t miss the stress. I do keep busy with various volunteer roles and a lot of crafting. I sew, I knit, I crochet. I have teenagers at home and they bring life and chaos and laughter into the home. But sometimes the days stretch long and I’m alone a lot. 

I hope you get some good news soon. 

Xx

anndanv
Posted by

Hi Shai, I hope you are hanging on in there! Is it this Friday (26th) you have an appointment or next Friday (2nd Aug)?

Thinking about you and hoping things have settled a bit for you!

Love Annette x

Shal1969
Posted by

Hi AnnDav

Appointment is tomorrow (26th). Fingers, toes and everything else crossed for positive results so I get back on some treatment 

Thanks again for kind thoughts.

Shal xx

Shal