In this episode I cover my first appointment with the consaltant.

Transcript

Before I get into the details of my first appointment let’s revisit the thought I left you with last time. 

After the initial shock, sorting out the must do tasks. How do you feel and what next?

Firstly don’t worry it’s quite normal for people react differently, and it will depend on both where they are  in their life and their personality as to how they react. For example, if you want to see how two people have reacted to a cancer diagnose and how different they are I would suggest you listen the Tig Notario’s Live Album and compare this to how Victoria Wood reacted as can be seen in her autobiography “Let’s do it” and is seen in the last few chapters. Tig opts to share her diagnosis publicly while Victoria goes to the other extreme and decides to keep it to a few trusted friends. Nothing wrong with either approach it is just what works for you.

For me I opted to try and continue my life normally, well as far this was practicality possible anyway. I did not want to be consider special or different, I just want to keep thing status quo while I worked out what my diagnosis meant to me. I also opted to share my diagnosis as needed but not shout about it to everyone. I was not trying to keep it a secret I just wanted to not be considered differently.

Firstly I needed to sort out work. I did not wish to give work up but I did need to make some changes to my working life. First while not difficult during the pandemic I did need to limit my work related travel and stress. This did mean I needed to change my role within the company I worked for but did not mean that I had to give up work. I think in part this was an easy decision as my condition did not noticeably impact my life and I felt that this would still give me a sense of normality while I processed everything else.

Unfortunately these changes were not going to happen over night but by working with my employer this is something which could be achieved. They where supportive and we made the switch from a job which was stressful with long hours and a significant amount of travel (well at least prior to to Covid-19 pandemic) to a home office based role with less stress and a more normal working week.

I am not sure if my reaction was correct or if I handled things well, but for me at the time this worked. Looking back on thing I was probably still processing what my diagnosis meant to me and also processing a bit of denial and shock.

Certainly after the initial diagnosis I did not feel any different, and while I had accepted things needed to change and my long term plans would need to be revised, other than this for me at this stage the only other feelings were around the anxiety of what is coming next.

So for those of you who were paying attention you will remember that I was left waiting for an appointment with no idea how long this would take so how did thing play out.

Well about two weeks later I got a letter inviting me for a telephone appointment during June  2020. This was about in line with the expectation I was originally given by my doctor of about 10 to 12 weeks. The important thing to note was the appointment was a telephone appointment and not face to face one. In my mind we can put this down to two different reasons. 

• The face to face appointment would have been in the hospital cancer ward and I would be mixing with people who were undergoing kenotheropy, and to protect these patients the standard was to limit people going in and out of the ward to those who strictly required to be there.
• Also the NHS has defined targets set by the uk government for referrals to been seen and they want to ensure that the initial response fell into these targets even if because of Covid 19 they could not make all the appointments face to face.

The good news was that I now had a date for my appointment, although it was remote and still weeks away, at least I had something I could focus on.

By the start of May, I had a revised appointment scheduled for an in person appointment towards the end of May.  So things had been changed to an in person appointment and I had less time to wait. Although I was asked to attend on my own, and was given strict guidelines to follow around distancing, sanitising and wearing a protective equipment (a medical grade face covering). 

On the day of the appointment I got my wife to take me into the hospital and arrived  for my appointment, checked in with the receipt team and had a blood test taken. While the test was being processed I went to sit back in the reception area. This took about 30 minutes which I felt was quite reasonable and based on my experiences in hospitals felt quite normal.

I was then called though to see the consultant haematologist. He started with a physical examination to check for signs of lymph node swelling, and we had a discussion about any possible secondary symptoms so he could determine the current state my condition had reached.

Once this was completed, I called my wife from my mobile and put her on speaker phone to act as a second pair of ear while we discussed things. This also allowed her to take part and understand what was being discussed, even though she was not allow into the hospital at the time because of the strict protection measures, and don’t panic I did ask the consultants consent before making the call which he was more than happy to give.

His opinion was that I was in the very early stages of CLL, and felt no treatment would currently be required based on the current stage that had been reached. This meant that his recommendation was that I should go onto “watch, wait, and see” monitoring. I will describe what this actually means next time.

He also went on to confirm that he did not envision any treatment being required for several years. Although did recommend regular blood tests to monitor the development of the condition every 6-12 months which he subsequently confirmed in writing to my GP so these could be performed by the GP practice and without the need for me to keep attending the Cancer ward.

Finally, I was given the opportunity to ask questions and clarify anything I did not understand stand and before leaving was introduced to a cancer nurse in case anything else came up I wished to discuss after my appointment. I useful safety net but one I did not make use of at that time.

I did query if there was any advice I needed to follow to slow the condition and was told not a lot just eat a balanced diet and stay fit.

So all in all and despite everything, I felt that things went well and I was a bit more reassured. I sent off to start my new life with the knowledge I was now going to have to learn to live with CLL. Although, it was nice to be told be careful but otherwise I could live a normal life and didn’t need to  worry about treatment anytime soon. Of cause everyone is different and the cause the condition takes will be different for everyone and the speed thing do develop will vary but at least give a typical person my condition was not of immediate concern.