February 13th - February 23rd

On the 13th of February I had my first MRI post radiotherapy and was a bit nervous. I know that the tumour is shrinking and will one day be gone however do not know where it is up to at this point. I would love for there to be some significant shrinkage in order to surprise Dr T (who would then say that the radiotherapy had obviously had brilliant results) when I go for my next chemo session on the 15th of March. We arrived early (it is impossible to judge traffic going out to Christies on a morning) and booked in. We were taken through for my canular inserting which was done in the crook of my arm very painlessly and proficiently by a nurse. I asked if Lel could come through with me as I was freaking out a bit due to the pain memory from my chemo session. It was far less painful than the insertion of the canulars into my hands for the chemotherapy. I discussed this with the nurse who said that hands are far more painful but that they prefer chemotherapy to go into your hand as opposed to higher up the arm incase of leakage into the vein. Once this was in, we were seated in the waiting room pending the MRI being available. Lel has always come into the MRI scans with me as, whilst I am not hugely claustrophobic in the machines - I always request the eye mask before I go into it, as well as ear plugs and the headphones, I find holding Lel’s hand allows me to relax and not feel at all stressed. In fact, I find them quite enjoyable. Lel had to complete the consent form before coming in then I requested the mask as usual. One of the nurses recognised us from a previous scan and asked how I was getting on. They must see a lot of people so it was nice to be remembered. They were struggling to find a mask this time, I really must get hold of one of my own for future. This was located and I put it on before laying down, they put the ear plugs in for me, put the ear defenders on then moved me into position. Lel held my hand the whole time as the scan was going. I think I may have been close to falling asleep. I always imagine myself on the deck of the cruise ship on the way into Venice and it gets me through it. Scan done, it was back home before Lel dropped me into work for my shift. Work went smoothly with no dramas and I was back round 3 or so.

The 14th of Feb, valentine’s day mum and dad were coming over to take me to oxygen. As I woke up I realised that I hadn’t got Lel a card. This is the first year that this has happened and I felt awful when I realised this. I apologised, she hadn’t got me one either. Cards don’t matter, we tell each other daily how much we love each other and that’s what counts. Not a card or a present one day of the year, but that lasting and solid commitment through hell and high water to each other. As we have done on recent Tuesdays, we went to the Trafford Centre to Giraffe for lunch then headed on to HBOT. Following this we headed over the the MS therapy centre for my session. This was the second one I have had on ‘Plant’ as opposed to in the chamber and I thought I would attempt to meditate for an hour. This wasn’t the easiest as the oxygen is in a hallway by the entrance to the chambers and focussing on my breathing and ignoring the other noise was hard. When the hour was over, we headed back home having agreed that, being mum’s birthday on the 16th we would go out for dinner when Lel got home. Traffic was shocking, whether there was an accident somewhere or whether being valentine’s day everyone wanted to get home for something, I don’t know but it was shocking. We got Lel and got to Prezzo for dinner however the cute back home for mum and dad was looking like 2+hours so we were taking our time. Round 7.30 we left and headed back up home. Traffic by then was much clearer and mum and dad made it back within an hour.

On the 15th of Feb I headed into work for the shift. I was working away with the odd person coming and speaking to me. At around 3 I realised that it was exactly 6 months to the day since my accident and I became a bit overwhelmed. When someone asked me how I was, I filled up and realised that I really needed to go home. The enormity of the past 6 months and what had gone on struck me and just wanted to cry. Whilst there have been some really positive changes to my lifestyle, 6 months ago I was carefree and happy and could have gone anywhere and done anything and would happily do this. Had this all not happened we would have been about to go away for Lel’s birthday to Italy, as it is now, we have a weekend in London and Bristol which feels a poor substitute. I ended up going to bed a little bit early with a stinking headache, think it was stress induced. I refuse to believe that every headache is something to do with my tumour - especially since I know that it is shrinking.

On the 16th of Feb when I woke I wasn’t doing well, I still had a pounding head so for the first day in the week, didn’t go on the rebounder. I text mum to wish her happy birthday and hid the fact that I was feeling awful. She has had enough to deal with in the past 6 months to be allowed to have a good birthday. I contacted work to tell them that I was struggling and wouldn’t be able to be in for the day. I was flitting between crying and feeling solid that I could do this, but mainly crying. I did intend to write my blog that day but I couldn’t fathom how to begin. My brain was all over the place. All day I was dropping back the time frame of the day so from the point when I text Lel to tell her to call me in case I hadn’t woken up, to my call to 111, to going to A&E, to having the CT scan, phoning mum and dad and then being admitted.  It was not a good day. I know that I am allowed bad days but this was quite a shocker if I’m honest. 

Friday the 17th was my day off from working. I am still on 3 day week, 4 hours a day and again, I intended to write this. Instead having bounced I did 4 wash loads, vacuumed the house and changed the bed. I think I was trying to distract myself a little but I was also feeling so different to Wednesday and Thursday that I was determined that life would be normal again for a day. I also booked an eye test for the following day, as well as dentist appointments.

On Saturday the 18th we were up early and headed over to Trafford Centre for breakfast before doing a little bit of shopping and going for my eye test at 11:30. It was 2009 last time I had them tested and I figured that given the length of time, and recent events, I could do with them checking. I had also noticed that things had become a bit fuzzy when reading street signs / watching the television as I was not able to wear my old glasses due to pain over my scar by my ear. Having explained to three different optometrists the last 7 months, my eye test went ahead. I was very happy that there was no damage to the back of my eye and that my vision has only slightly reduced in 8 years! We were offered to have the glasses made up whilst we waited so headed back out for a bit more of a wander and to kill time. We popped into Holland and Barratt for a few bits, and whilst there I was insulted by a shop assistant who pretty much told me that I had really bad skin and that the only thing that would make it better was a £30 pot of cream, also that my body was massively missing nutrients. I left the store feeling awful. I had been having a really good morning, it’s amazing how one anonymous stranger can make your whole day crash down around you. We went for a brew whilst waiting for the glasses and I was nearly in tears. She was so thoughtless in her quest to sell a small pot of cream, which strangely enough, I refused to buy. I will not be going back to that branch of the store, I am a resilient person but I do not wish to be spoken to in that manner. I do not need that, I am dealing with enough at this time without an opinionated no-one casting their opinion over me.

Sunday the 19th was a trip to Chester to visit Lel’s dad, Pauline and Norah. We had a nice meal but after a couple of hours, by the time everyone was on dessert, I was exhausted and just wanted to go home so we set off home a bit earlier than planned. On getting home, I was wiped out and sat for a while, dozing.

On the morning of the 20th I had my smear booked in so headed to the doctors, walking with Lel. I explained to the nurse my previous history of grade 4 cells on my cervix and how, when the sample was re-tested through St. Mary’s there was nothing wrong with it, also how continued tests and checks proved that everything was ok, I was a little worried that there was no record of this on my file but already knew that whilst I was getting treatment under Mr Clayton at St Marys, I was still getting letters telling me I needed a smear - left hand could do with talking to the right hand maybe!! When I got to work round 10, I saw my boss for the first time in about 2 months. We have just kept not working at the same time. I had a supervision which was interesting - I am on a phased return to work which should include putting reasonable steps in place to get me back into work and keep me there however, HR want this to be completed within a month regardless of the condition! Hmmmm… I am currently working 3 days a week, 4 hours a day and HR have requested authorisation from my boss to only pay me for the hours that I am working. Fortunately at this point, she has refused this and is going to continue to do so so long as I start to increase my hours. I was also told that I am going to have to fight to get a favourable rating on my annual performance review. I was unhappy with this, saying that at my mid year review I had been told that I was in line for a 4, the highest rating therefore to now be told that I would be getting a poor if not a 0 rating was a total shock. I said this to my boss who I think was surprised that I was defending myself and called me a ‘tough little cookie’. I don't think she has seen that side of me before but over the past 7 months I have learnt a deep resilience that I may not have had before. As Macmillan says, no-one who has cancer should also have to fight with their work, it’s hard enough to fight cancer. I was a bit frustrated at this, but the supervision finished at 2, at which point my lift took me home. On getting back, I looked on the Macmillan website as I knew I had read somewhere that it was illegal under the disability discrimination act to provide a lower rating due to time off through cancer treatment! Having read this, I felt much more relaxed and happier, I emailed it to myself at work with the knowledge that when I complete my APR I can include this in my fight for a good rating. I went to work in the week between diagnosis and surgery and have been back since the middle of December therefore only fully absent for 3.5 months and whilst I am not yet back up to full duty strength I am doing jobs that someone else would have to do if I was not. Dinner was rancid, my first major fail in a long time! We had pancakes for pudding, there has to be some bonus for a bad main course!!

Tuesday the 21st I had my appointment with my GP for my next ‘return to work’ note. Mum and dad had headed over early to give me lift there so that I didn’t have to walk, to be honest, it’s not that far but it was very kind of them. On getting to the doctors, the waiting room was full of coughing people. I remembered what Catherine had told me, so asked the receptionist if there was a separate room I could wait in and explained why. She was lovely and found a spare treatment room where I was put to wait. After 15 minutes or so she came in and asked me if I was ok to go through to her room, which I explained that I was, just that I didn’t want to wait with everyone else which she said was very sensible. She asked how I was, I explained any side effects I’d had, i.e. very few and talked through my appointment with Dr T who she knows, she said ‘she doesn’t pull any punches does she?’ and also mentioned how her empathy isn’t huge! I asked for the next set of limited hours which, due to my chemo she recommended I do for the next 6 months however I explained the pressure from work and she reluctantly agreed to do it for 5 weeks only. She told me to come back for my next increase in hours and reminded me that if i get a cold or anything then I have to go back and see her as a matter of urgency. I am so so glad I changed doctors, she is very good and I feel reassured whenever I see her. We then did our usual and went to the Trafford Centre for an early lunch. Half term meant there were more children there that dung beetles in elephant poop! It was manic so we headed for food early, then after that went to get Lel a birthday card and some wrapping paper. Oxygen was fine, I do find that I struggle to relax as much when I’m on plant as in the chamber as the corridor is so busy but it is still doing me good. We had decided that with it being Lel’s birthday on the following day we would go out for dinner again so mum and dad stayed late again, we met Lel then headed to Prezzo for another lovely dinner. We were home by half 7 and chilled as normal.

Wednesday, Lel’s birthday, we were up early so she could open her presents. I want to make the day as nice for her as I can even though we’re not away any where so took her a brew up and let the dogs out to let her stay in bed a little longer. When she opened and read my card she burst into tears, I hadn’t meant to do that to her but this year has meant that kind gestures make us both upset at time. Pressies opened, we had breakfast together then she headed off to work. I was picked up earlier than normal for work, so was going to be doing 4.5hrs which would make work happy. I completed various tasks that I had been set during supervision and the day went very smoothly. A couple of practitioners came in to speak to me ask they wanted a chat about home life, it was nice that they still feel that I’m part of the team and that they want to come and talk to me, it felt very reassuring to me that I am still valued, by them, if not HR! She had asked me for spaghetti bolognese for dinner - I had offered her to go out for dinner but she wanted that so I made it once I returned from work and accidentally burned it as I got engrossed in writing some of this but she said it still tasted amazing! It was a quiet night but I ended up with a headache and went to bed with paracetamol.

On the Thursday morning, it was another early one for work. I was quite relaxed about the day as I have the whole of the following week off. I got everything done and started to try to complete my APR however found the categories confusing so, when after a chat with my boss she said I could go home a fraction early, I was very grateful. Mum and had had headed over again to collect the dogs and take them home for the weekend, to be returned on Wednesday when we are back and that’s where I am now. Clothes laid out on the bed ready for the trip, supplements packed, awaiting Lel to come home whilst messaging Iona on Facebook! I’m proud of my ability to multi-task still! 

February 11th - February 12th

Having had some amazing comments from people following me starting the blog - they are all so kind I have updated it so it is now fully up to date to this point. I know that it is really dull in places however it is how our life has been, and is still going on. We have brief flashes of drama (and trauma) in and amongst every day life. I have realised though how lucky I am, my tumour - apparently is incurable, to me this means that the NHS have not found a cure that they can patent as yet. It will apparently return however since I am planning on living until I’m 88 years old, then that’s fine, it can come back then. 

When I saw my MRI scans for the first time in Mr Leach’s office I felt sick due to the size of the tumour, however I have since realised how lucky I am from it. The tumour had pushed my brain over quite a way from where it should be, as well as pushing my skull upwards and thinning it. When I shaved my head for charity in 2010, the photos from then show that my skull was slightly higher on the right hand side, over my tumour!! This shows that it had been there for at least 6+ years as it couldn’t have pushed my skull up overnight. I therefore have a larger skull with more space in it so should the tumour come back, there is space for it!

I am very lucky, Grade 3 Oligodendrogliomas, whilst apparently ‘always’ coming back do not metastise to anywhere else in the body so should it decide to come back, it will come back in my brain only and into the gap left by the tumour that has been removed. It has also made me re-asses my priorities in life, last year I worked every bank holiday going in order to get the money, now I prefer to spend the time with Lel, family matter. Hold your loved ones that bit tighter and tell them how much you care for them. In a way, it has been the best thing that has ever happened to me, whilst I am less tolerant of ‘people’s shit’, it has shown me how much I love my family and how much love I have from people. 

I believe that whilst the NHS have told me it is incurable, to me, this simply means that they haven't found a cure for it that they can patent yet. Paraphrasing Sophie Sabbage - Every mountain is unclimbable until someone climbs it, every feat is impossible until someone completes it - also there is no cancer that has not been survived by someone somewhere in the world. I have so much hope and belief that I will beat this and in 20 years time I will show the NHS that Grade 3 Oligodendrogliomas do not ‘always’ come back.

January 28th - February 10th

So, it’s now the 10th of Feb and I’m updating this after a couple of weeks off. The spa we booked was rather a disappointment, it was only £12 each which wasn’t too bad, but at 10.30 it turned into the loudest swimming pool this side of Lanzarote with screeching children, balls being thrown around and general disarray. There were a limited number of loungers with a clear sign saying not to reserve them, yet there were towels on a fair few with no bodies!! The outside hot pool was nice however there was a lady in there who clearly wanted to talk, so our relaxing morning turned into a therapy session for her! The weekend was relaxing though, Sunday we cleaned downstairs, it was good to get something solid done as we hadn’t done any proper cleaning since all of this started. Whilst out for the weekend I had a message from a friend who I hadn’t spoken to in years but had been diagnosed with breast cancer and would be having a mastectomy the following week - there seems to be so much around now..

Monday was work as usual with no great excitements, Tuesday was oxygen, last one in the tank before I was banned for 9 months due to the Vincristine. (Apparently Vincristine and hyperbaric oxygen therapy don't go well together!) Mum and dad came over to take me, I think mum was worried that this was the last time she would see me well and ok - she still has the view that the chemo is going to make me really ill, although I have talked to dad to try and get her to go back to see Jackie as this might help her.. Tuesday evening we had a settled night, we talked a bit but I felt quite calm now and just wanted to get on with it now that the decision had been made to go ahead.

Wednesday morning we got up as usual, had some toast and headed over to Christies for soon after 10. My bloods appointment wasn’t until 11 but my cancer guru, Catherine B had suggested that we go early so my bloods would be through in time for my consultants appointment at 12. We did bloods then headed over to Maggie's for a brew and watched some TV on the phone for 45 minutes. At 11.35 we wandered back over to the hospital to wait for our appointment. At 11.50 the chemo unit phoned to see if I had seen Dr T as they were ready for me, I told them I was due to see her at 12 and we would head over once done. Half 12 came and went, 1pm came and went, 1.30 came and at 1.45 the chemo unit phoned again to see if we had been seen yet. I said that Dr T was running late and we would be over as soon as we were done. At 2 I spoke with the reception who spoke with one of the nurses to find out when I would be seen and told them that the chemo unit had been on the phone to me. He was annoyed that they had phoned me and said if they call again, to tell him! At 2.15 he called me into one of the side rooms, weighed me and made a note of it and at 2.25 or so, Dr T came in. 

She asked me what had changed my mind since we last saw her, I told her that I had spoken with and oncologist who is also a homeopath who listened to me and as a result of that this discussion I had changed my mind. She told me that I have to ‘embrace it and not just dip my toe in it’ which I thought was an odd thing to say. I knew she was going to ask me about what supplements I was on and had already decided to tell her that i was just on my vitamins and that I had stopped everything else. I mentioned that I was taking some remedies but that they wouldn’t interact with the chemo - she stated that they would do and what was I taking. I told her arnica for bruising, and opium for constipation and she was ok with these 2. I couldn’t remember any others and couldn’t be bothered with the hassle. At that point I decided that any other discussions regarding my supplements would be nil. I have spoken with other medical professionals who understand nutrition and have told me that PCV is good with all my supplements

At 2.45 we headed over to the Oak Road treatment centre side and spoke with the receptionist to check in, I apologised for being late and said they had been phoning me. We sat for around 10 minutes before being called upstairs to ‘Team 1’. On getting upstairs we were directed to a chair where a nurse called Mandy would be looking after us through it. We sat and went through a heap of questions before she started to try to get the canular in my hand. I suggested my right one as I know that they had managed to get drips in here easily in the past so thought we should try with that one. She struggled to raise a vein, then when she went in, I had to tell her to stop as she was pushing in, it wasn't going anywhere and was ridiculously painful. It felt like she was pushing against something solid, I told her this and she stopped. She said she thinks she might have hit a valve so took the needle out and started to look for a vein on my left hand. After 5 minutes or so of attempting to raise one she managed to get a needle in. It was really quite painful but she got it in and got a saline drip going. After 5 minutes or so of it moving she went to get the Vincristine drip. 

The drip was attached and checks completed, all was fine but a bit sore as it was going through into my arm.  We continued to talk as the drip went in with her conducting regular checks, the dogs being a large part of the conversation - that and  the idiocy of Donald Trump and the British Governments cuts to the NHS. We talked through the further medications that I required and what to take and when to take them. As my drip finished she swapped me back onto the saline only bag to allow it to flush through fully. Around 45 minutes after it had started (the infusion is meant to take 10 minutes, slow veins and all that) the bags had run through. I buzzed for a nurse to come and take the canular out and we were done. We were told to get a good thermometer and take my temperature daily to ensure I  could keep an eye on possible infections. We called back down at the reception to see about our next appointment and asked for one as early in the day as possible - at least if we have the 9am appointment she can’t be running that late by then! Clinic only starts at 9 so requested this one for when my scheduler returned to work the following day. 

We called at Unicorn on the way home to get some more veg, getting back home round 6. The poor dogs had not managed to hold, and I was cursing not getting keys cut and over to Emma before today, however, it was a good impetus and made sure that we did this later in the week.

On getting home I took the second part of my chemotherapy - Lombustine which was a 4 tablet medication. There was also a third part to be taken for 10 days however there are various dietary restrictions when taking this part and dinner contained a banned food therefore I decided to start this the following day. Lel popped to Tesco to get a couple of thermometers which we tried out. According to Lel’s temperature (33.4 & 33.7) she would have hyperthermia so this proved to me how incorrect they were. 

Thursday morning I felt constipated, there was a warning that Lombustine can do this but I realised that we had hardly eaten anything either during the day before so I wouldn’t have a huge amount to come out but started on my new chemotherapy tablets - Procarbazine. I was starting to feel nauseous which they also warned could be a side effect of it so I took my antiemetics which had been prescribed. I figured this could be from the constipation though so was sending Lel out to buy laxatives as well as an accurate thermometer!! Thursday night I felt a bit ill still but took an antiemetic and had some dinner with Lel. My temperature was around 36.2 which is normal for me, I have always had low blood pressure and slightly low temperature so nothing to worry about. I found that I felt really ill over my green juice today which was irritating as this is something that I know I need to keep putting into my system to keep me healthy, and that the smell of juice made me gip. Somehow I'm going to have to find a way round this. Not sure what though as yet.

As Friday happened, I remained constipated but with a good temperature and no other side effects to speak of. I had significant bruising on the back of both hands from the canulars but if that is all I can whinge about then I have got off lightly from this. The weekend was interesting, on Saturday we had a trip to see Strictly Live, courtesy of DJ which wiped me out as I did too much during the day, then Sunday we cleaned upstairs. 

The following week I was still off work. I had booked for the whole of the 10 days of the Procarbazine treatment as annual leave as I want to avoid the germ factory that is work for this period when my immune system may be a little low. I have been fractionally tired in the afternoons but other than that, now the constipation has gone I’m fine. 

I have read some amazing books most recently, The Cancer Whisperer by Sophie Sabbage who is going to be speaking at Maggie's in March and we have arranged to attend the evening. I’m really looking forward to it as she has been a real inspiration. In the mean time I have also linked up with people from the Brain Tumour Support Trust Facebook group and have been chatting with them, as well as linking up with a friend of Lel’s who has recently been diagnosed with cancer also. On my diagnosis I felt embarrassed and didn’t tell anyone other than direct family and people who needed to know i.e. work and close friends. I felt as though I had done something wrong and didn’t want people to know. I also didn’t want people to mither Lel with questions. I asked that she didn’t tell any of her friends pre surgery so that they leave her alone and said I was quite happy for her to tell people afterwards. She did this, bless her and as with everything else during my treatment, she has been amazing. On the day I finished radiotherapy I finally put something out on social media to explain what had been going on and had the most amazing feedback and support. It was incredible, the out pouring of support that I had from them all. From the outset of putting it on social media I wanted to offer support to other people who are going through cancer of any sort and have finally, today started to put my diary into a blog. I don’t believe that this is interesting but if it can help people who are struggling a bit with their diagnosis and what is going on then all the better.

January 18th - January 27th

On the evening of Wednesday the 18th, we sent an email to Dr T telling her that after the discussion with Liz, I had changed my mind and I would be going ahead with PCV. I felt I had to put a bit of a bit of a dig in there about changing my mind having had a good discussion with someone who listened to me, so she didn’t think that it was just due to her. It might be petty, but for me, I felt I had to put it in there! Lel got an email back from Dr T asking inviting me to start chemo on the 1st of Feb and that’s where we’re at now. 

During the day of Friday (20th) my infrared sauna arrived so I set it up in the loft and tried it our during the day, Lel went in it when she got home from work and agreed that it was fabulous. 

On Saturday (21st) we took the dogs to the vets not using the motor ways, this was a long and protracted drive, made even more so by the fact that I took us to the wrong surgery (doh). I calmed myself down and we got to the right one in a decent time. We had decided that we would go to mum and dad’s for the evening and stay overnight so headed over. We got there - 5ish then headed out to Pizza Express for dinner. It was lovely being out with them. Mum is clearly very nervous of my chemotherapy and I spoke with dad to suggest he look at some information on it so he can talk her down when she starts to get agitated, I also suggested she might want to see Jackie soon to help her. We headed home on the Sunday, after mum had emptied her fridge for us so as to stop us needing to shop the minute we got in, bless her!

The week at work was uneventful, I was continuing with the WFM/rota work however it had started to frustrate me too much so I contacted someone for some more help, I was also doing some duty work, reviewing and completing call audits so felt to be getting back into the swing of things. I did notice though when someone asked for advice that I struggled to focus on what they were saying. I know i will get back into it with practice. We also have a shift review that the results were published from - good news, no more nights, this can only help me get back to my job fully sooner than I previously thought. I decided to book the 1st-10th off to allow myself time at home to be protected whilst on this first chemo cycle and to avoid the germs office, as Denise says, since I’m not doing full duty work, I can be off whenever at present, no issues. I have also booked off the says when we are in Bristol, I still have 7 days leave left so may use some of these for my next cycle, will see how this one goes.

So, I thought I would be good and try and put an extra Liver Flush in before I started PCV so yesterday (26th) I fasted and having got back from work, took the epsom salts as required, then at 9 had the grapefruit and olive oil. At 11 I woke to profuse vomiting which lasted for around 20 minutes. I went back to sleep until 2am. At the point of going to bed, I knew I might have an interesting night, as well as Lel not feeling brilliant so had chosen to go in the back room. I went to the loo at 2.30 and then sadly didn’t get back to sleep.  When Lel got up I got up with her. I figured having thrown up most of the grapefruit then the flush wouldn’t have worked so not to do the 2nd day of it. As it stands it’s worked a little but no where near as much as last time!! 3 episodes and that’s all

I am now (27th Jan) on LDN, Iscador as well as my supplements, have looked at a presentation from Patricia P on chemotherapy for Brain Tumours therefore have modified my supplements to support me the best I can, as well as now thinking of PCV as another supplement to that will work alongside everything I’m taking, as well as everything I’m taking supporting PCV. By seeing it in this light, I feel ok about it. None of my other supplements have made me ill so there is no reason why this one will either.

We have also, this morning decided to go to a spa this weekend as I’m not going to be allowed near any for a bit due to infection risk. We may as well go and have a good relax, as we both particularly love Coniston Spa but it’s too far away just to go for tomorrow so have found a place nearer here. 

January 10th - January 17th

On the Tuesday as I came out of oxygen treatment I had an email from Dr Liz ’s secretary in Bristol (we had been due to go late February) offering us as appointment that Friday (13th of Jan). I checked with Lel and Mum and Dad and we agree that we could make it down there for it. We were aware that the weather was looking a bit dodgy for the Thursday night / Friday morning so there was some discussion regarding going down early Friday morning or late Thursday night. We decided that a Travelodge would be worth whilst so that we didn’t get stuck anywhere on the way down and this was booked by mum and dad - fortunately they accept dogs so we were all having a trip away!

The Wednesday evening I had a call I from Dr McCall at the LDN clinic to run through a few details to make sure that I would be ok for a prescription, we had a bit of a laugh on the phone, i had a giggle when about an hour after he had called he sent me an email saying that he was still at work and waiting for 4 burly men in white coats to come and take him away! As expected, he fully agreed for me to have an LDN prescription and sent this over to the pharmacy for this to be made up.

Work itself was fine, I was getting back into it, working through so WFM / rota stuff and concentrating when I was in there. I was finding it very tiring and at the end of the 3 day week I was still shattered.

On Thursday evening, mum and dad came over, we had a very quick dinner then loaded the car up and set off at around 7 to try to avoid the rush hour traffic a bit. We headed down to Bristol, it was a gorgeous clear night with the most amazing stars that I looked out at for most of the journey. It was a very clear run, we had one stop off at the M50 junction services. One quick wee then back on the road, getting to Bristol at around 10.30.

The car park of the Travelodge was like an ice rink - it was freezing and the thought of snow round Birmingham at 6am seemed a real possibility. We headed down to our room, Harry was dancing down the corridor, Jade was less impressed but still ok. Harry thought this was the best thing in the world ever and when then dog beds were put down in the room they went straight down onto them. They were amazing that evening. Lel and I sat and talked for an age, around 11.45 I was starting to get a headache and told Lel that I had to go to sleep, I was exhausted and really hoping for a quiet night. At 5am Harry got up, shoved his name in Lel’s face and decided that he needed a wee. So, in PJ’s and trainers, we took both dogs out onto the grass at the front of the hotel. Harry wiggles his way and danced down the corridor, Jade mooched along until she got to the laminate when you would have  thought there were crocodiles there with her reticence to cross it! It was really frosty and cold still. They both did huge wees, bless them and I was glad that they had woken us up, even if it was blooming early. We both tried to go back to sleep but failed, so made a brew, had a shower and around 8 met mum and dad to head out of the hotel. We had figured out during the drive down that since we didn't have to check out until 12, the appointment being at 9.30, we would have heaps of time to head back to the Travelodge after to collect them before we headed home. We packed up and took our bag to the car along with the ‘dancing’ Harry and ‘scared of crocodiles’ Jade and left. We popped to Morrisons for some breakfast as it was only a mile away, I started to get really stressed as I was worried it wouldn’t arrive in time for us to get across Bristol for the appointment. Having left there, traffic wasn’t bad but was slow at times and I could feel that I was getting wound up. I knew that we would be ok but we arrived at 9.27 for the 9.30 appointment! Too close for comfort for me!!

We were directed to the waiting room upstairs via a ‘grid door’ lift. I hate that type of lift and avoid them as much as possible, when we arrived at floor 2 and got out, I was so grateful for the end of the lift ride. The waiting room was a bit odd, 7 doors off a landing type space, one of which the noise of a dentist could be heard through. When sitting and feeling nervous, the last thing you want to hear is someone having their teeth drilled / polished!! Lel was a little jittery having drunk too much coffee however, at around 9.40, Liz came through and called us in. 

Her room was huge with 2 wing back chairs opposite her desk, it was very comfortable as a consulting room and put me at ease. At the start of the consultation she made it clear that whilst she had studied oncology, she hadn’t practised as such for around 15 years and now was a homeopath who supported people with their treatments as well as consulting as a homeopath. We had a consultation where she dug deeper into 'my stuff' than anyone has done for a while and towards the end of the consultation said something that struck with both Lel and I, she said ‘Don’t think of Chemotherapy as a poison, try to think of it and think of all the love and passion that the people who went into creating it put into it’. Before we left, we arranged another appointment for the 28th of Feb. As we walked down to the car we were both feeling more confused but also feeling lighter. It was very odd but not an unpleasant feeling. She had made me open my mind a bit about chemotherapy. I have no memory of the car journey home, other than when we stopped at the services for a break. It was lovely with a fab farm shop which we had a really good look round after eating.

The weekend was a bit of blur, we talked a lot about what we were going to do, Lel reiterated that it was my decision as she has always said and that she will support me whatever I chose to do. By late Sunday I had decided to speak with Sue about my change of mind and sent her a message asking her if I could call her on Tuesday. I told Lel that I was thinking of going ahead with PCV. She was scared, I’m not over the moon about it but Liz changed my thought process and way of thinking about it making it an option as opposed to me being told that I had to do it, and being made to feel as though I was a child who had been sat on the naughty step for not agreeing to what Dr T said and hadn’t been given an option, just threatened. 

I arranged to speak with Sue D on Tuesday to talk through how I was feeling and my options. After a good discussion where she also changed how I felt about Dr. T, she suggested to me that I change what to expect from Dr T, not to look for any empathy or compassion but to just see her as providing a service and by doing that, the appointments would be less threatening to me and less stressful. She also said that she could support me fully with homeopathic remedies and that all the supplements I was on, I would be ok to stay on. This reassured me and really gave me the okay to go ahead with it. 

January 3rd - January 9th

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!!

December 24th - January 2nd

On Saturday - Christmas Eve - I had previously made plans for Emma to come for breakfast, then come for a walk at Clifton Park with us as this was Lel’s last advent calendar door. We had a lovely big breakfast then took the dogs to out. We had never been there before however, on recommendation, thought we would give it a try. It was brilliant. Most of the dog owners put their dogs on leads, only 2 didn't but compared to normal, this was fabulous and Jade was much happier. Breakfast and walk over, we got home, Lel went to Pet’s at home to get dog food, I went over to Emma’s as she hadn’t wrapped her Christmas pressies. We then headed over to Jayne’s to drop off her Christmas pressies. On the way back, I messaged DJ who then headed over for a couple of hours. It had turned into a lovely day which was surprising, given how the week had been earlier. We had a gentle night, fortunately there had been some good Christmas TV on so finished the bolognese and caught up on TV.

On Christmas day, I was up early, let the dogs out then took a brew up for Lel round 7ish. We opened our pressies to each other then headed downstairs to do those. I could quite easily ignore the bigger picture and we were determined to just have a normal Christmas, although we both knew that this may be difficult at times. We packed and headed over there, Lel driving amazingly well. She proves every day that she is brilliant and I am so so lucky to have her. We had lunch, went to see grandma, then had dinner. Isla had been with her dad all day therefore we were ‘doing Christmas’ on the 26th. We watched at bit of TV and around 9:30 headed up to bed.

On boxing day, having not slept brilliantly (Toby dog was up 4 times overnight), I let Lel have a lie in, only waking her with a cup of tea at 8.30. Em and Isla came down for around 10 and we started on a mountain of pressies soon after. Em kept saying how we have to cancel / reduce Christmas next year, and whilst I agree with her, I didn’t feel that this was the time to have the discussion. I know how much it means to mum and after the year that she has had I was happy to let her enjoy the day. It’s been hard for all of us, and just because they haven’t openly said how hard it has been, doesn’t mean that it has been at all easy. I was a bit annoyed that this had been brought up during the day however, lunch and the rest of the afternoon all went as usual, including Isla being over tired at the end of the night. That’s just Christmas!

On the morning of the 27th (Tuesday), Richard came over for a bit and we headed back to Salford after we had seen him. It was a quiet Christmas but that was what I had hoped for. We got back home round lunchtime and spent the next hour unpacking! This is always the case after Christmas, and as much as I agree with Em that we need to make Christmas smaller, I love mum, her generosity and kindness and wanting to make others happy.

On the Wednesday I was back at work, Lel had said that she was going to look after me, make juices, dinners, clean the house and generally behave like a house elf for her days off. I took the washing out of the washer and that upset her as she was determined to do everything for me for the week whilst I was at work. She asked me a question, I was thinking of the answer and knew I was taking a minute and she said to me ‘hello? did you hear me?’ I got really upset as I had heard exactly what she said but since radiotherapy I find I sometimes have to think more for answers sometime, it was the first time at home that I had noticed this and I found it really really upsetting, especially with her response to me, although I know it wasn’t meant in any way to hurt me at all. I can’t remember what the conversation was about even now. When I got to work I continued with what I had been on with the previous week, it was useful to have something to focus on and to make my brain work, although I found it very tiring, more so than I would have possibly imagined prior to the surgery / radiotherapy. I found that I couldn’t think of certain words and that sentences often came out in the wrong order when I was struggling to think of what I was trying to say. This was frustrating and the first time that I had really noticed it in work so far. Noticing twice on the same day was irritating and I hoped that it was just a bad day as opposed to anything of more of an indicator of what is to come! Lel collected me from work and when we got in, we started to make dinner together, this was her idea as she wanted to cook for me all week and I love it when she does.

Thursday, she took me to work again where I finished the sickness absence forms I had been doing for the team, this felt ironic to me, bearing in mind the sickness that I have just had however I finished this, Denise was happy with it so sent me home round half 1 which was lovely. Again, we cooked together when I got in, life felt almost normal and very nice too! I know we were just keeping going over Christmas and not talking about it but for now, if this was what we had to do, then we would do it. We both knew we would talk, but not just yet.

Friday I was at work again with Lel taking me in and collecting me. I did my return to work form at work. I have taken the option of getting phased return notes from my GP as I don’t trust work to support me and stick to their word in keeping the return slow. Denise suggested that I have a consultation with occupational health in order to have my shift / weekend requirement reduced as if this isn’t done then they can’t keep me off these shifts. This was irritating as there are practitioners on other teams who have had cancer and during their recovery haven’t done full shifts for 18 months or so, where as Denise seems to feel that I have to be back up to full strength far quicker than that. Fortunately I am covered by the disabilities act and as much as I don't want to have to use the legislation, if I need to, I will.

Saturday, we popped to the Trafford Centre to get a few bits to eat, had brunch at Giraffe which was a real treat then took the tree down which was good fun! With the help of Christmas TV and M&S food we had another good night in. Sunday we went to Clifton Park again with the dogs, along with Emma, Chris and Vicky. Again, it was a lovely walk and we just continued as ‘normal’. Alison had told us early on that we needed to find a new ‘normal’ and I felt that we were doing that, not always easy but life and living MUST continue. 

We both had Monday off together and went to the cinema to finally see Fantastic Beasts and Where to Find Them. I had made soup the previous day so we took this and a sandwich each to eat whilst watching it! It was so much fun! Almost like a picnic, I loved it. The film was good too and we had a really lovely time there. For some reason I had thought it would be a good idea to go to the Trafford centre afterwards to do the returns from mum’s Christmas pressies, forgetting that it was Bank Holiday and it would be rammed.  After attempting to park for an hour and driving round in circles, me becoming increasingly frustrated, we headed home to chill out with the dogs. As much as I try to remain calm when stuff is going on now as I know it really doesn't matter, I find it so annoying that I can’t drive or do anything useful at all now. I feel that the driving ban has had a real impact on both of us and it is driving me a little mad.

December 19th - December 23rd

On Monday (19th) I had an appointment with the Dr to get a return to work note to specify the hours and days I wanted to be working. I had been concerned by Denise saying that I had to be back at full shift capability within a month and on TC’s advice asked the doctor to specify 3 days a week, 4 hours a day. She did this with no issues. My face by this stage was in full allergic reaction state. Puffy eyes, dry skin and hives all over my face. I then headed over the oxygen where my face got worse - especially with the mask not allowing my eye bags to drain away. That evening I had a chat with Lel and we tried to work out what was causing my face such a flair up, we figured it may have been a bad batch of Astragalus - one of the many supplements that I take as the colour was different to usual and it was the only thing that had altered. I cut it out and hoped for a fast result on the improve…

On Tuesday I was due back at work. Kath collected me from Oxygen and took me in. It felt like the first day at a new job and really odd. I had decided that I would work downstairs and headed through. I couldn’t remember any of my passwords and had to get one of my colleagues to phone to get it all re-set, slightly annoying but fully understandable I thought! I had 978 emails from the 3.5 months. 700 or so were deleted almost immediately, the rest I looked through and either filed or tried to read a bit. I struggled to focus other than just pressing delete and by 3.30 I was shattered so Kath ran me home. 

On Wednesday, Lel and I were heading over to see Dr T to discuss how we were going to move forwards with my treatment. I knew that this was going to be a difficult discussion as I had decided that I wasn’t going to have Chemo. I had tried to tell Lel this but, in hindsight I don’t think she fully heard this. I knew that I was doing the right thing and that my way is the best way to get rid of the remaining tumour but also knew that the medical arena wouldn’t agree. On arrival at the department I was asked to have my bloods taken then wait for my appointment. That done, we sat and waited. And waited.  As usual, Dr T was running late so at around 9.30 we were called through by a nurse to a side room. She took my weight - 60kgs, and height, between 5’7” and 5’8” which the  nurses argued over for the best part of 5 minutes and I found highly amusing!! We then waited again. Around 10 minutes later, Dr T’s registrar came through with consent forms for chemotherapy. She asked how I had been, I said I had supported myself through radiotherapy with some supplements, but knowing that medics do not support the use of the supplements that I use, I did not tell them all of them. She seemed surprised that I had had no adverse effects from it other than the hair loss and I asked her how long before I was to expect my hair to grow back. She then said that she was there to discuss chemo which would cause my hair to thin, that we had discussed that chemo may make me infertile (we hardly mentioned it previously - definitely not discussed it) and that they wanted me to start the tablets that day however they did not have a seat available for the drip so I would have to come back for that another time (even though according to all literature the drip and a tablet are what start the chemo off). I told her that I was wanting to avoid chemo until after my first MRI scan as I am convinced that I am shrinking the tumour. She told me that she would have to get Dr T through for further discussion and we sat and waited again. After another 10 minutes or so, Dr T came back with the registrar. 

Dr T asked how I had been and then asked why I was refusing chemo. I explained, as I already had done that I was supporting my body nutritionally with organic food, with oxygen therapy, homeopathy, supplements and an infrared sauna and that I was hoping to shrink it myself. She told me that the radiotherapy and PCV were to stop the tumour coming back in the future. I said I would like to wait until after my first MRI in 2 weeks, (we had been told it would be 6-8 weeks after I finished radiotherapy) before I agreed to anything, she then told me that it would be a further 6-8 weeks from this point before my next MRI and asked me what would change my mind that I needed it. I told her that if there had been any growth as any shrinkage would show that I am doing the right thing, bearing in mind I was always told that the radiotherapy was to stop it coming back and extending my life as opposed to shrinking it. She then said that if it has shrunk it would be because of the radiotherapy - which I challenged her on as she had always said that the radiotherapy would not shrink it. She then said that they say that incase it doesn’t so as not to get people’s hope up. The ultimate goal she said was to give me a 50% chance of living more than the expected 7 years, giving me a 50% chance of making 14 years.  I told her that I would like some evidence on papers that I could read at home, she asked me what my background was - I told her the police and child protection and she told me that I most likely wouldn't be able to understand the research. I bristled and told her that I had people who would be able to help me with it but that I could not say yes to the chemo. I told her that I was cleaning out my immune system so it could cure itself, she told me that cancer hides from the immune system so no matter how well you look after yourself you have to have chemo. Regardless of what I said, she told me she could only advise me that I should have it, and soon as the research shows it to be most active in the 2-4 weeks after radiotherapy had ended. I told her that I still couldn’t say yes, but that I would like the research papers.

As we left the hospital to head over to Maggies (we had decided previously that we would pop in and see the place), I asked Lel how she was and she broke down saying that she was petrified.  I could fully understand that however, to me, knowing that everything that I am taking and how I am making my body heal itself, chemo was just not an option in my mind, especially having been made to feel like a child who had been put on the naughty step having refused to to what she had been told. I thought that I had explained this to Lel however it would seem that I didn't manage to do so successfully. I felt awful that this was the first time that she had heard this decision of mine, when sat in the room in front of Dr T. Maggies was lovely, a really calm relaxing space. They made us a brew, asked if we wanted to speak with someone or wanted a look around. We just sat and talked and Lel cried a bit more. I felt awful that I had done this to her. I obviously hadn’t managed to tell her, even thought I thought I had already explained where I was coming from. After an hour or so we left, with the intention for Lel to come back after Christmas in order to speak to someone. We were both going to work for the afternoon so as we got back to Salford, Lel dropped me in work for 11.30, took the car home then ran into work.

I didn’t do anything that day, I was feeling rather shell-shocked from the whole experience so sat and talked things through with TC for a couple of hours. At 3, Joe was leaving so ran me home. I messaged Lel when I got in to ask how she was and how the day had been. We had discussed earlier her getting a taxi home so she could be back early. That evening we didn’t really talk much about the appointment, I think we were more upset about the figures that Dr T had said but I was again, reassuring her that I knew what I was doing, that Patricia had said that if I can’t cure my cancer doing all I am doing then no-one can. It was an odd night and we were both shattered.

Thursday I was back in work, 12-4, I had had some work allocated for me to do so it gave me something to concentrate on which I found really useful. When I messaged Lel it became apparent that she wasn’t doing so well. I felt awful that I had made her feel like this and felt very selfish about my decision. I hated the fact that she had been crying at work and walked home on the phone to me so distraught that she could hardly speak at times. And this was my fault. It was my decision that had caused this. I always knew that the meeting with Dr T was going to be a bit like this but as I hadn’t told her my decision fully, then I hadn’t been able to prepare her for it. When she got home we hugged, she cried, I felt guilty but again, tried to reassure her that I am doing so many other things that have been shown individually to reduce / remove tumours that I knew I was going to be ok. I have said since the very start of this that I am going to make 88 years old. At least. And Lel will make 93 years old. That is my aim and I intend to get there. I had a few things that I needed from Tesco that evening and we headed there, I’m not sure how Lel managed to get out of the house and shop but, again, she proved how amazing she is, and did.

Friday I was not at work, and being the last working day before Christmas, Lel was finishing at 12. She seemed better but I think after the previous evening she had decided to try and park it until after Christmas. I messaged mum to let her know that we were not going to talk about the matter whilst we were home for Christmas so could she please tell dad and Em that as well? I wanted Christmas to be as easy as possible for her. Lel got home round 1, we had a quick sandwich then wrapped the rest of the pressies. I had made a Bolognese for her in the morning as I know when she is struggling it is one thing that she will always eat. We had an early dinner then, round 8 had a bath. It was lovely, we listened to the radio 2, Christmas Carol that had been on the previous night and had a good relax.

December 11th - December 18th

Late in the evening after Lel and I had had our weekly bath, mum and dad arrived. I had an appointment at 12pm on Monday the 12th with Patricia P in Chesterfield therefore we needed to set off by 9:30 or so to get down in time. I was late in as Patricia’s earlier appointment over-ran. She was brilliant, asked me how I was, for a brief history of what had gone on and what I was doing to support my recovery. I showed her my scans, she said she had never seen a brain protect itself so well from injury with a tumour in there, she was also surprised that I had been fully well before, given the size of it.  She took a full list of the supplements I was taking, as well as discussing the HBOT that I am having, the infra-red sauna and that I am wanting to refuse chemotherapy if at all possible. I am of the belief that my tumour is shrinking and, as she said, if I can’t shrink it with my diet, supplements and lifestyle then no one else can and she may as well quit her job!!  This gave me even more faith that I am doing things right. She advised me to stop eating grapefruit as this can stop supplements working, as well as suggesting an additional supplement - LDN - that is reported to assist with kill cells that assist the body in getting rid of tumours. She advised me to discuss this with either my GP or homeopath as Sue D is a GP homeopath who could prescribe this for me. I left feeling brilliant, that I am doing things right and that I am heading in the right direction. I mentioned to her the ‘melt downs’ I had had and she described them as the pressure cooker going off and stated that this was a good thing, and definitely not to worry about them!

Mum and dad were around for the rest of the week to assist with lifts too and from oxygen, as well as taking me to see Sue on Thursday. From early on, both Em and mum had been on about mistletoe (Iscador) as a treatment for brain tumours and mum this week was like a dog with a bone saying that Sue D should be prescribing it to me as ‘The Bristol Homeopathic Hospital’ say you should have it. She was going as far as saying she would come in to Sue D to have that discussion with her before I came in. As I said to her, I felt it would be very rude to say ‘my sister who is a homeopath says that I need this too’.  I was planning on mentioning to Sue D that Patricia had suggested a prescription only med that she could prescribe, as well as saying that I had read about Iscador to try and bring it up that way. 

Tuesday I headed over the DJ’s to see the new house, as well as stripping wallpaper off - it’s definitely a project, him and Amy are far braver than I ever would be, good luck to them both.

I had decided to do a Liver Cleanse on Thursday, Friday, Saturday and Sunday as Chris Woolhams recommends this highly to clear out gall stones. During the week we bought Epsom Salts as required and on Thursday I started it.  A juice in the morning prior to going for oxygen, then one on the way to Sue D’s for my appointment. 

Sue D was lovely as always, we had a full catch up as she had not seen me since the week before I started radiotherapy. She was very impressed that I had not had any symptoms through it, took a list of the supplements that I could remember, discussed how I was feeling, my diet and what Patricia had suggested - we discussed Low Dose Naltrexone, strangely she had just got a book on it - and she said that she would read up on it and speak with a doctor in Glasgow who knows a lot about it. I mentioned that I had read about Iscador, she told me that there is an issue with the current UK supplier but that she had considered both as part of my on-going treatment. I love the way that Sue works, she doesn’t throw everything at you in one session, first time she provided me with a remedy on a deep level as well as talking about the banerji principles, second time we discussed diet and remedies to help with radiotherapy, this time we looked at the next step for my supportive treatment. She advised me how to speak with my oncologist and the questions to ask her on an intellectual as opposed to an emotive level and re-itterated that I am doing amazingly well and she is blown away by how well I have come through it all. I showed her my scans and she was even more surprised that I had had no symptoms prior to it, and how well I looked, how well I am emotionally. She also agreed that I need to let steam off as it I may be acting strong to help everyone else and that I need to look after myself. She therefore said that she would send me a couple of remedies to help me with going back to work and balancing my emotions. She will be sorting the Iscador and LDN after Christmas as my next step. I was starting with a rash on my face by this time and was unsure what it was but it wasn’t too painful. I mentioned this to Sue D and she suggested various remedies to try and settle it down.

On getting back home, I had 2 cups of epsom salt flavoured water - not to be recommended to any sane person. My excitement for the evening was grapefruit juice and olive oil mixed together, delightful. Mum and dad headed back home for the weekend in the knowledge they would see us at Christmas. The grapefruit and oil was lovely in comparison to the Epsom salts however, at around 11pm I woke feeling very sick. After a quick visit to the bathroom I went back to sleep, waking at 5.30 or so with an urgent need. Around 7 I took the first of my next Epsom shots, having the last one at 10. The salts had the desired effect and for the rest of the day I was up and down to the loo around 15 times. I didn’t eat until 2 when I had a juice, this went straight through me and out the other side. In the evening at dinner time I had a jacket and salad which stayed put! Next morning there were a couple more trips to the loo but it was pretty much sorted and my energy levels were really high. I felt cleaned out and amazing.

We headed to the Trafford Centre to finish Christmas shopping on the Saturday and I was almost fine. I felt brilliant, the cleanse definitely did something other than just make me poop! Shopping finished, we went back home for the evening and had burger and a potato again. The Sunday was a quiet day, I was due back at work the following week so we decided to have a quiet one.