Aaarghhh!

Well, after a truly awful few days I have news to report from my scan. After many phone calls to the hospital my oncologist called me and told me that there was ‘no change’. I asked her if the tumours had reduced in size and she said, ‘No, exactly the same.’ At first I was very relieved that they had not grown, but this soon turned to dismay and then full blown depression that they had not continued to shrink. I am confident in the way I am treating my cancer and truly believed that the tumours would have continued to have got smaller.

Now, in my experience, oncologists sometimes neglect to tell you the whole story so I felt it important that I look at the scan report myself. To this end, I asked to pick up a copy of the report , which we did yesterday. I can only say that what I saw was unbelievable. Basically, it looked like they hadn’t even scanned where the tumours are! Both Andy and myself were very confused and in a daze at this point, so I waited until I got home and telephoned my oncologist. I have literally just got off the phone and I am completely incensed! She informed me that they had not scanned my neck. I said ‘but you told me there had been no change, and as a consequence of this I have been in bed for the last few days and have pulled out of being in a documentary on LDN’. She couldn’t possible say that there had been no change when my neck wasn’t scanned in the first place!

Obviously, she tried to wriggle out of it and fob me off and then said, ‘because you are not having ‘treatment’ we don’t really have to give you scans anyway.’ Basically she was saying that because I am choosing not to have their nasty mustard gas pumped into my body that the hospital has no duty of care. I told her that if this is the case I was going to make an official complaint, at which point she told me that she could organise an ultrasound on my neck which would determine the size of the tumours. I cannot begin to tell you how angry I am at this news. If they can tell what is happening by carrying out a simple and SAFE procedure which will give me the results almost immediately, then why wasn’t this option offered to me in the first place? I think she only offered me this option because she knew I was going to take the matter further.

So, now I have to go through waiting for results again, when I am only just beginning to recover from the last few dark days.

There are so many issues surrounding this whole fiasco, not least, IF I were having chemotherapy they would have continued to scan my neck each time so that they could justify spending hundreds of thousands of pounds on it. As soon as money is no longer involved they don’t particularly care what is going on, and stop scanning the tumours!

Yet another of my bugbears is that Doctors do not listen to what their patients are telling them. I have told her on more than one occasion that I will never have chemotherapy again, and yet she told me ‘I know you said you wouldn’t have anymore chemo, but…’

I did enter into a conversation with her regarding ‘alternative cures’ which she tells me she has never heard of, but she is obviously going to continue to say that chemo is best as that is what is so lucrative for her. There have been so many studies carried out that have found that DOING NOTHING results in cancer patients living four extra years than if they had recieved chemo. These are not ‘quack’ studies, they have been cited in the Lancet, the doctors own professional magazine.

Anyway, I am aware I have rambled quite a bit here, but I am still so angry about the whole thing. I rounded off the conversation with my oncologist by telling her that she works for me, not the other way round, and that I should be respected for my treatment decisions and that there should be complete honesty between the two of us. She did make a half-hearted attempt at an apology, but it was pretty weak to be honest.

I fully respect anyone’s decision as to whether they have chemo or not, but I honestly believe that if you don’t take responsibility for your own health and demand openness and honesty from healthcare ‘professionals’ then it will very much be to your detriment.

Rant over….

 

 

 

 

 

The Agony of waiting…

I had my scan on Friday. It was totally horrific for me, just being back in the hospital made me feel so panicky and depressed. I asked to have the cannula put in on the ward, as last time the CT nurses couldn’t find a vein and I ended up black and blue! Trouble is, this meant having to go to the chemo ward. I can honestly say that I don’t know how I managed to go there for treatment every three weeks. As soon as I entered the ward all the memories of how I used to feel came flooding back. I was hoping someone would recognise me and ask me when I would be returning for more chemo, just so I could tell them about what I was doing and how bad chemo is. Unfortunately nobody did recognise me so I didn’t get the chance! ¬†As it was, it took them three attempts to get the needle into a vein, and then it was up to Medical Imaging for my CT. Once there, I had to change into a gown and sit with lots of other depressed looking people also sitting in gowns. Words can’t describe how I feel when I am sitting there…scared, vulnerable, no, they just don’t sum it up. Anyway, after a twenty minute wait I got called in, and, to be fair, the nurse was really lovely. It did, however, take some persuading to get her to remove my cannula after the scan as she said, ‘Don’t you need to go back to the chemo ward now?’. At last! I got my chance to tell someone at the hospital that I had given up conventional treatment and was following my own path.

Now, of course, is the excruciating wait for results. Again, words can’t accurately describe the feelings that I am experiencing right now and for the next week or so. ‘Terrified’ doesn’t even begin to sum it up! I hate feeling like this, as most of the time I am feeling positive, living in the moment and truly believing I am getting better. The very moment a scan comes into play all that goes out of the window and I begin to question myself and think negatively. It’s one thing hoping for the best, but, at the same time I believe you should also prepare for the worst, just in case.

So, I am doing my best to keep occupied, not over think things and get on with day-to-day life. As the end of the week approaches though, I know that I will be in a real state waiting for the phone to ring…willing it to, and at the same time dreading it. I think I have made the right decision to hear the results over the phone, but it does mean that every time the phone rings my stomach lurches and I start sweating!

At the end of the day, getting worked up about it isn’t going to change a thing, but sometimes that is easier said than done…especially when I look at my beautiful family…

Back To Reality!

Hi! It’s been a while since I last posted, mainly because I have been too busy enjoying myself! In the past month Andy and myself have been down to London to watch the recording of the Alan Carr Chatty Man Christmas Special (It was great!), spent 10 days in the Midlands with our families over Christmas, spent a night in Birmingham, and have just returned from 4 nights in Cornwall!! Being so busy has really helped keep my mind occupied and has certainly helped with the awful weather we are having to endure! However, it’s now back to reality with a bump!! Next week I have a CT scan booked and, after careful consideration I have decided to go ahead with it. Is it any surprise then, that all I want to do now is book another holiday!

I have always hated returning from holidays, even if I am really happy with where I am living. I have always found reality quite difficult, even though my reality is a good deal better than a lot of other peoples. I am very grateful for my wonderful family, that we have a lovely home to live in and enough money to be able to enjoy ourselves, but I can’t help getting a sinking feeling when I step through the front door after a lovely time away.

Our recent stay in Cornwall was one of the best breaks we have ever had. We stayed in a detached lodge which was very luxurious (we couldn’t get the kids out of the jacuzzi bath!), and although the park did not have many amenities, it had a warm swimming pool which the kids went in every day. We have previously been to the park and whilst we were there previously Boots taught himself to swim! That was partly the reason we went back, as we know how much the children love the pool. Again, they were swimming away happily each day. We managed to get them out of the pool,( and bath) to get a day in Newquay. It is not my favourite town, especially in Winter, but the sun actually came out on the day we went there and so we managed to get a walk on the beach.

So, back to reality and a few difficult and worrying weeks ahead, waiting for my scan results to come back. I am trying not to get in too much of a state, as there really is no point, but most of the time I can put my diagnosis to the back of my mind. A scan automatically puts it right at the forefront. I have been taking my supplements and LDN, and have stuck to my diet (well, most of the time!), and so I am feeling hopeful. I also have other things I can put into place should the result not be what I am hoping for, so I know that I need to stay relaxed and not let my mind get carried away. I am going to practice mindfulness more and make sure that I do my meditation every day, and also try to get out and about (weather permitting!)

I am aware that it is also a difficult time of year generally, mid Winter and torrential rain every day! I, like many others, also get quite a bad case of the post-Christmas blues. It is the Winter time that I find the most difficult, and hate wishing my life away waiting for Spring. At least I have Elena and Boots to keep me busy. If it wasn’t for them, I don’t know how I would be coping. Our holiday was extra special as we didn’t take a laptop, so we spent quality time with them without them constantly asking for computer time! It is because of this that we have decided to limit their computer time even more now that we are back to make sure we do things as a family on a daily basis. It may take a while for them to accept this, but I know they will adjust and appreciate playing more games with us and hopefully going out for more walks.

Right, I suppose I had better go and un-pack, have a little cry, then get on with life! Wish me luck….!