15th March - 17th March

On the 15th of March - this was my second chemotherapy session. We were due to see Dr T. at 9am so arrived for bloods at 8am as per the advice on the letter we received. We landed there and I had my bloods done by round 8:10 so waited for my appointment. At 9:15 we were called through to the room by a nurse where I was weighed again. Soon after a doctor came through - not Dr T. and asked how I had been since my last cycle.  I explained that I had had no side effects other than a little peripheral neuropathy which he seemed confused by where it was. 

He was not aware that I had had a scan so I asked for the results, he came back through saying 'the tumour has responded to the treatment'. I wasn't sure what he meant so asked 'is that good? Does that mean it's shrunk a bit?' He said yes. We were both really pleased by this, first bit of really good news that we have had. I asked the doctor whether I would be heading through to treatment straight after that but we were still waiting for my bloods to come back. 

We waited back in the waiting room for someone to call and let us know whether I was ok for it. We text lots of people to tell them that we had had some good news and the tumour had responded to the treatment - whilst we had no exact measurements, anything is better than nothing. Lel emailed Dr T.'s secretary whilst we waited to see if we could get some more definite details about how it had changed, turns out Dr T. was on holiday for the week, hence us seeing someone else. I was quite sad as I liked him and would have been happy to see him again. Around 25 minutes later, one of the nurses came and called us over, putting my records into a bag for us to take through to Oak Road centre. My bloods were apparently fine.

We headed down to Oak Road to the reception and handed my notes over. They suggested that we go to Maggie's for a while as 'an analyser was broken' so it might be a while. This made no sense to me as apparently my bloods had already been checked before we went over there but I didn't mind going to Maggie's. After 20 minutes or so, I received a phone call from one of the nurses who called us over there for my chemo.

We headed back to Oak Road and upstairs where I was seated and asked for a heat pad for my hand in order to raise a vein. Having had this on for around 10 minutes, the canular when in much easier than last time and much less painfully.  I warned the nurse that I had slow veins and she said she was actually having to slow it all down!! The treatment only took half an hour for the whole session this time, unlike the hour it took on the first occasion. Before leaving, I was given my other lombustine and procarbazine to take at home, as well as my antiemetics. 

On going home we headed to do some shopping and did some basics then headed home for the evening.  I took my lombustine and procarbazine before dinner, ate and had no nausea feeling or anything of the sort. At 8.45 or so I headed up to bed as it had been an early start for both of us. I got to sleep no problems at all. 

At 1am on the 16th I woke up feeling really hot and sweaty and very very sick. I headed to the bathroom and threw up once before going downstairs to get some anti-sickness tablets.  I got back up to the bathroom and as I did so I saw Lel had the bedroom light on. She came in to see how I was, and as I sat on the loo saying I was going to throw up, she started to say 'you're not going to throw up' at which point, I violently vomited into the sick bucket at the side of the toilet. There was blood in my vomit and I was scared by this so I asked Lel to go and get the Christies card from downstairs as I thought I needed to call them. I spoke with a lovely lady on the phone who told me, given the blood in the vomit that I needed to go to A&E and that she would call them in advance to warn them that I was coming. 

As Lel drove us down, I was sick another twice in the car and as we got to A&E I got Lel to walk me in, leaving the car outside. I booked in and the took me straight through to triage where I explained what had happened and that I thought that this was my own fault and I pretty much knew what had caused it however I was scared because there was blood in the vomit.  I suggested to Lel that she park and come through to the where they were going to take me in A&E. The triage nurse took me through to the HD area of A&E, getting me a red tag on my way through.

At around 2.15 someone came through to take my bloods but we were then left alone for around another 2 hours. At 4 or so a nurse came in and put a bag of plasma-lite on a slow drip through my arm after putting an antiemetic in through the canular. Until this point I had been sick every half hour or so as well as going to the loo a couple of times every hour. Around 5am, a doctor came through and said my neutrophils were low, down to 1.1, and they should be between 3.4 to 8. He suggested a chest x-ray and requested a urine sample saying that they would be likely to keep me in for a day or so and do another blood test the following day to see if the count had increased. Just before he came in, a nurse came in and put a high dose of antibiotics through the canular to try and prevent any infections. Once the antiemetic kicked in, I started to fell better. It felt like a switch had been flicked and I no longer felt sick at all, it was incredible. Until that point I had been retching or throwing up to the extent that I just wanted it to end.

The drip bag was going through really slowly, at around 6 or 7 another doctor came in, listened to my chest, discussed my sickness then told me that they were going to take me through to the ward soon, onto the haematology ward where there was the only side room available left - due to my chemo and low white cell count I needed to be in a single room so in a bit they would move me through.

Round 8am another doctor came through, the consultant from the haematology unit who said they would speed the plasma up, then put another bag through. He was happy for me to go home when the bag was through then come back the following day for another blood test. He seemed very practical and said if I felt ill, I should come back to hospital but to head home one the bag was finished with some extra antiemetics.

We left hospital around 10.15, getting home to the dogs that Emma had so kindly fed and let out for us in the morning at Lel's request. I went through and took my next dose of procarbazine with some antiemetics, took my temperature and went up to bed. Lel brought me my hot water bottle, cold water and I fell asleep soon after. I wanted her to go to work for the day but had no idea then she left as I was fast asleep, possibly round 11. I woke just before 2 but refused to move apart from the odd bathroom trip.

After being so ill and bringing up food from breakfast, lunch and dinner I knew I didn't want any food similar for some long time! I asked Lel to get me some GF white bread on her way home from work as I knew I would be able to eat toast but wasn't sure about much more, and definitely not lentil pie for some long time (nor would Lel sadly and it had been her favourite!).  Lel got home round 5.30 and seemed very awake still, lord knows how she was so with it but she was incredible as usual! She took the dogs out, fed them then went for chips for herself. She returned, I had toast, she had chips and we watched a bit of TV. At 8 she fell asleep on the sofa, I left her until half past when I woke her to take the dogs out. I took another antiemetic before heading up to bed.

We both slept really well, I left Lel asleep until the alarm went at 6.30. We got up and after an easy morning headed to hospital for my blood tests doing at 10ish. At 1 today I had a call from a doctor telling me that my neutrophils were lower, down to 1 and my white blood count at 1.8 so rather lower than they should be. He suggested I get another blood test next week at my GP so I will give them a call later in the day or early next week. I'm a little worried about being at work next week with them being quite so low however I will have a discussion with Lel tonight about it and see what we decide.

February 24th - March 14th

Having not posted for some time I feel it is time for a catch up..

On the 24th of Feb, Lel and I headed down to London for a weekend there, to see a friend and to go out for dinner for her birthday, before heading over to Bristol to see my homeopathic oncologist. London was good, busy but we had a good wander around and I managed not to be too tired for most of it. We went to the Moomin museum which was incredible, had a wander round Hyde Park in the sunshine, twice as well as visiting Liberty which I have wanted to do for a long long time. (Lel treated me there and bought me a lovely scarf too..) Dinner for my friend's 40th was also good however I found it hard staying awake so late and being sociable!! It was a good fun break away. Whilst not the usual birthday break that we had for Lel, it was still nice to be back doing 'normal life' things.

On the 26th of Feb we headed over to Bristol. Having stayed in a rather posh hotel in London, we decided to stay in the traveloge near the centre of Bristol in order to save a bit of money and be practical for the town and walking out and about. Whilst there, we visited the SS Great Britain as well as wandering round the old part of the city - St Nicholas Market which was lovely and did a bit of shopping. On the 28th we saw my homeopathic oncologist for a follow up check which all went well. 

I took the rest of the week off as I knew I would be tired following the busyness of the weekend away. I was very glad that I did as I really felt it after walking around and getting trains late at night, as well as waiting around in stations for long periods of time (I'm terrible at booking the cheap trains, as well as panicking that we would be late for them so I always book late ones).

On the week of the 6th of March I was back at work, working my first week of 4 days and doing 5 hours a day. I had also been told that I had to be back out onto the shop floor. Whilst I was away, a keyboard and mouse had been ordered for me. The keyboard was exactly what I had asked for, however the mouse didn't work so I spent a while trying to sort all of this out.

Being on the shop floor was useful I could see who needed help or support when on a call and could assist with reviewing work. I did this for the first week every day and caught up with various members of staff, as well as a few more specific supervisions that people asked me to do.

The following week, commencing the 13th of March I was only in work for 2 days. Due to training events happening the following week I would be moved to another desk, to try to keep me safer from infections. Whilst I had been told that I had to be with my team initially, the new desk is at the complete opposite side of the room however I can still see my team from there. It is a little frustrating how the ground rules shift whenever work see fit for this but when I ask for some leeway, then it is difficult to get.

For the first couple of days, as the previous week, I helped with reviewing, advising staff and doing some compulsory on-line training.

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.