On Tuesday I was back at oxygen and Lel back at work for her first day back after Christmas which seemed to go quite well. When she got home we had dinner and headed over to the Trafford Centre to do the returns that we had intended to the previous day, we were home by half 8 and I was wiped out. As we went to bed, Lel asked whether I was ok to be going to the do at her dad’s house ‘for Christmas’ in a couple of weeks. For some reason I became really offended by this, I’m not sure why. I think it was that I feel fine and when people are always asking me if i’m ok I find it a bit claustrophobic. Lel has always checked with me as to whether I am ok to go to her family ‘dos’ so I don’t know why I got so upset but she became upset and went really quiet. As it was, I went to sleep being unsure whether she was going to stay with me or whether she was going to leave me (in hindsight, this is ridiculous but it’s amazing how the mind works). I was really frightened that she was scared and was going to run. I don’t have a choice, I can’t run but thought that she was going to. It was horrible, I felt really lost.
I was back at work doing 12-4 on Wednesday for the rest of the week, again, having to get taxis as lifts had failed, I did however decide to walk in to see how long it would take me - 40 minutes in the pouring rain made me realise that I will definitely use taxis or lifts for certain! I know I will get used to not driving but I’ve not got used to it yet. I felt to be getting a bit low at this point but work was keeping me busy - doing PIP plans and sorting WFM so back as I used to be before all this happened. Lel ran home on Wednesday, I met her as normal with the dogs and she was very quiet, hardly said anything. We had to pop out to get some logs and I asked if she wanted dinner first, she told me that she had sent an email to Dr T and had had a response today - guess that’s why she wasn’t hungry although she said that she hadn’t read it yet. We headed out - in silence, bought logs, loaded the car up and drove back - in silence. When we got back I asked her what was wrong and it became apparent that she had been holding in all holiday her fears over my health and refusal of chemo. She hadn’t known before the meeting with Dr T that I was going to refuse the chemo, it had been a massive shock to her and she had felt isolated for the whole of Christmas, thinking that everyone at home was on ‘my’ side and she was alone in it. She said for the first time, she felt like she didn’t belong at mum and dad’s house. I felt awful about this, she cried on me, I wished I had the ability to make it better for her but I knew that for me, I was doing the right thing. We had decided before Christmas that she was going to go to Maggie's and it seemed very important, especially now after this. We talked and talked until she felt she had been able to tell me everything. I don’t like it when we don’t communicate and it had felt as though we were a bit stuck. When we finally went to bed I felt much more reassured than the previous night. I knew that as scared as she was, she wasn’t going anywhere and she still loved me. I told her that I wasn’t going anywhere either, that I’m far too lazy to die and I had no intention of leaving her, at all.
On Thursday morning we were talking about my treatment again, she said that if it were her then she would have chemo and support it with homeopathy and everything else; after Lel had gone to work and I got up I showered, started to write an email to Sue D (my homeopath) and lost it. I realised that I was actually really frightened, and whilst I believed that I had made the right decision, I was starting to wonder. Although this was starting to make me question whether I was doing the right thing. When the oncologist gives you numbers like that, whilst they are only numbers and averages, it still doesn’t pose amazingly well in the long run and got me scared again. I had been so positive and so determined to stick 2 fingers up at the medical community however now I was just scared and not sure any more. I couldn’t breath, I didn’t know what to do. I was curled up on the bed and had no idea what was happening. I phoned Lel who came straight back and also told me to speak to dad knowing how reasoned he is and how is good for both sides of the argument. I explained to dad that if I have PCV then it has to be started in the next 4 weeks otherwise it won’t be effective - whilst during the initial consultation with Dr T she had said the chemo had to start 2-4 weeks after radiotherapy, she later said in her email to Lel that PCV needed to be started up to 12 weeks after finishing radiotherapy (and that I was seeing Liz Thompson just before the next 4 weeks were up), that they won’t scan for another 2 months still and even if they do, then there will be nothing on the scan that would convince them that I don’t need chemo as apparently this is for the future and to try and slow down the re-growth in some years time. From being certain, all of a sudden I felt I had no idea what was going on any more. Dad was talking it through with me, looking at the other things I’m doing, as well as saying if I decide I have to have PCV, they will support me. I am aware that a lot of the supplements that I take may have to stop if I chose to have the chemo and I am wanting to keep myself healthy so so much. It is really important to me to make and keep my body as strong as possible and chemo goes against that. I was so confused. When Lel walked in I was vacuuming out the fire, I gave her a huge hug and just collapsed on her shoulder. I was so glad that she had come home for me, I couldn’t believe that she had done but I was so grateful that she did. We sat and talked, she emailed Dr T to ask whether if I decided that I wanted chemo then I would still have time after seeing Liz to chose to have it or whether I needed to make the decision earlier. We talked things through and I settled, I still felt frightened and realised that it was the first time that I had actually got upset over the whole situation. Until this point I had only wept a few tears, never actually got upset or let emotions out so I guess I had it coming! Round 11.30, I decided I felt ok and Lel headed into work. I got changed and ready for work. Just as I put the dogs out, my phone rang, it was dad with Em for me - bearing in mind that she hadn’t had a lot of the information that I had already sent mum and dad, and that we had, as much as what she wanted to say was kind, it wasn’t really that useful at the time. She did however offer me to send some information to a consultant who people go and see when they have no other options available which seemed a good idea for a second opinion. I’m hoping that Liz will provide that and give us a balanced view by having the homeopathic and allopathic view points. Mark collected me for work, I headed in and finished off on the WFM work I had been doing. I wasn’t doing great still however work (and mark chelping on) could distract me enough from how I was feeling. When Lel got home, we talked more, she apologised thinking that it was her fault that I had got upset but as I told her, we always communicate and we always talk to each other, the thought of not doing, and of her feeling isolated or alone really upset me. I was really hopeful that we could be open again from now on and be back on track as usual.
On Friday (6th) I was feeling a little delicate, I had been planning to walk to work again however thought I would text Sue R and see if I could have a lift. She landed just before 12, I got in the car, she asked me how I was and I burst into tears. She took me back into the house, made a brew and told me that I wasn’t going to work for the shift. Told me to be kind to myself and that it was fully understandable that I have finally got scared. We discussed everything that Dr T had said, along with what else I am doing am she just said that I will know when I am doing the right thing although she fully understands how confusing and scary it must be. I was exhausted after being so upset the previous day and was getting a headache too. I think it was from all the crying. It was good talking through things with someone who is totally separate from the whole situation and able to look at both sides of the argument. Sue stayed for around half an hr then headed to work. I had a nap, then round 4.30 Lel got home. I took the dogs out for a walk and sent her out to get a steak for her dinner, she needs to have treats still and if nice dinner is something I can do as an easy thing to make her happy then I will. It’s not much but if it makes her smile after the week that we have had then I would do anything to do that. She had not had a reply from Dr T, I however had had a reply from Sue D with details about LDN which we had been looking at starting me on - this has had had good results at slowing tumour regrowth and removing tumours. Also Sue D is going to get me started on Iscador next week, which is brilliant. After a couple of shocking days I feel to be taking control back which is how I have gone through the whole process so far. I know that the people who survive and thrive with their cancers are those who don't just acquiesce to what the doctors are saying and find their own support as well. I am a bit scared now, not of dying but of leaving Lel alone but know that I am again doing the right thing. I need a second opinion before I chose PCV - I’m seeing Liz on the 7th of Feb or before if there are any cancellations (I really hope that there are). But in the mean time, I’m starting on iscador and PCV. Lel has told James that she is going to go to Maggies to talk to them there as she has realised that she needs someone just for her - very important as far as I’m concerned.
The following week passed relatively calmly, with me phoning the LDN clinic on a couple of occasions to see if I could have a discussion with them regarding my treatment.
On Monday I had a doctors appointment for a further sick note, having been told that my doctor had left on mat. leave I had an appointment with Dr. Nolan. She was brilliant, when I said that I was still tired on 3 days a week, 4 hrs a day she told me I had to stay on this for another 4-6 weeks before we would re-look at extending the length of time at work. She was fabulous and I was so pleased to have found her. We had a really good chat regarding my thoughts on chemotherapy and my treatment schedule - helped by the fact she has a PhD in oncology! I will be seeing her again!!
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