When we got home, it was lovely to see the dogs, however I couldn't cope with an awful lot. I know that mum had made me a lentil daal as I was still struggling from the codeine and that I had some of that before bed, other than that I don’t remember anything that happened the first night home. The next few days form a blur, Lel would get up and go to work, mum would get up and make my juices and bring me one in bed at around 9 when I’d had some more sleep. 10ish I would get up and go to the shower, mum would come and help me shower and wash my hair. I was scared to touch my head especially around my scar so mum was very careful with it. I would then go downstairs for a couple of hours and sit in the lounge with the dogs. Lunchtime mum would make me something, usually poached eggs with rye bread and avocado while we watched Bargain Hunt then I would go back to bed for a couple of hours. When I got up we would go for a walk in the park as mum was determined that I needed to get moving. It was difficult walking outside due to my vision issues and I had to hold on to someones arm. Round 5ish we would go to collect Lel and get her home, she would then walk the dogs, we all would have dinner together, watch TV for a while then bed. On the Wednesday the district nurse came to remove my stitches, I had really been hoping for dissolvable ones as I was very scared that this was going to hurt. Fortunately she was very patient, let me hug a cushion in the foetal position whilst she took them out. There were 30 of them in total, spaced out at just over 1cm between each, she commented on how neat it was but also how big the scar was! The days rolled in to one with me getting a bit better every day and having regular trips to the Drs as, in their haste to get me discharged, I had been sent home from hospital without my full quota of medication. Whilst in Tesco on Friday (in the cereal aisle!), I had a phone call from Mr Leach’s secretary asking us to go for an appointment on the Monday for my histology results. I felt reassured that this was before the MDT therefore I shouldn’t worry too much, every indication that we had been given throughout was that it would be a grade 2 benign tumour due to the location of it, the size of it and the fact that contained an amount of calcification therefore slow growing so we were hopeful that this was what we were going to hear.
The first weekend that I was home, mum and dad went home leaving Lel and I alone. It was a quiet one, we stayed in and did very little. Saturday was very gentle, nothing really went on, Lel helped me shower and we chilled out. With Lel having the London Royal Parks half marathon coming up, I was determined that she would continue training so as to get a good time - she was hoping to get under 2hrs and I was sure this was possible. I stayed in bed and watched Anne of Green Gables whilst she was out, I promised not to get out of bed until she came back, and did as I had said! On her return, she washed my hair in the shower we had a very easy day.
On the Sunday night, Em came over to stay, she was taking us to hospital the following day. It was also Richard’s birthday so we had decided to have a curry on the Monday night. Em went to Sanskruti to collect a take out on the Sunday as it was closed on the Monday then came back. I think we had quite an early night and don’t remember a huge amount from the evening. I had decided during the day that I didn’t want to continue taking codeine and put myself onto paracetamol and nurofen only. I stopped taking them and figured out that if I decided I didn’t need them, then I wouldn’t bother.
On Monday, Lel worked 8-1 so that she didn’t use too much leave. Em and I collected Lel and went straight to hospital for the appointment. It felt strange being back at hospital one week exactly after being discharged. Lel and I left Em at the cafe and we went up to Mr Leach’s office. I was quietly confident and hopeful that all the signs had been accurate and the tumour was benign and indicated. Alison came to get us and took us through. As usual, there was the medical student ‘Tim’ in Mr Leach’s office along with Alison and the 2 of us. 5 people in a small round always felt cramped. Mr Leach asked how I was, how I was getting on. I told him I was doing well, other than the issue with my eyesight. I asked him what my results showed, I can’t remember how he phrased it but he told us both that the tumour was a grade 3, anaplastic oligodenriglioma and that it was more aggressive than had first been thought. I would be needing radiotherapy and chemotherapy and that Mr Leach may see me again in his office in order to take it out again if it grew back. Being the sort of tumour that it is, he described it as incurable and all they could do would be to try and stop it growing. If it did grow back though, it would grow back where it had come from and it would no cause secondary tumours elsewhere in my body. This was a massive reassurance to me. Lel, bless her got very upset. She had been sat silently next to me, I had seen her shoulders starting to move as though she was about to cry and I turned to ask her if she was ok? She burst into full tears and I hugged and held her. I didn’t know what to say, other than we would be able to fight this and I wasn’t going anywhere. There was nothing else really to ask and Alison told us that I would have an appointment with an Oncologist on the Thursday morning, she would be speaking with them the following day and would call to confirm the time for this, she also said that she would be with us for the appointment with the oncologist. As we walked back down to Em, I was Lel. I knew that this, as horrible as it sounded, wasn’t going to be the end of me. I had too much to do, and as I kept joking ‘too many people to piss off before I died’. Em was sat at a table outside the cafe, as I got to her, I burst into tears and told her what had been said. I knew that I couldn't speak to mum as I wasn’t very coherent. She made the call for me as Lel and I walked around the car park, we walked round and round and kept moving. After 15 minutes or so we went back to Em who had finished on the phone to mum. Em drove us back home as we talked. I was still positive and unfazed although a bit upset by this. I had a bit of a headache when I got back home but figured that some of that was stress from the meeting.
We headed back home and waited for Richard to get the bus over to Manchester. Em headed into town to collect him as Lel and I heated dinner up, we spent the evening eating curry and watching Anne of Green Gables. I was a little manic and didn’t want to go to bed, staying awake was easy, I knew that when I went to bed, what had been said would catch up with me and I didn’t really want that to happen. When we finally went up - 11ish - I was in quite a state and lay next to Lel and cried for a bit. I eventually made a random joke and stopped us both crying and we went to sleep. Richard stayed with me on Tuesday as Em had to go to see someone in town. I had a long lie in, made brunch then we went for a walk to the park. Whilst there, Alison phoned to confirm the time to see my oncologist - Dr Tran at her clinic at Salford Royal on the Thursday. It was a lovely day again for a walk in the sunshine and sitting on a bench, talking on the phone to Alison was a bit surreal. We headed home, Lel got back from work round 3:30, Em got home round 4 and her and Richard left us alone. After they had gone I had a few tears, it felt as though I could cry a little easier with only Lel around.
Wednesday morning, mum and dad came back to stay. I was happy to shower by myself by this time and was feeling a little less tired. I had still avoided codeine and intended to do so, I was managing with paracetamol and nurofen although I was starting to realise how strong codeine really is as my headache was starting to return. I was managing to keep a lid on it with other meds and intended to do so. Em had also given me, pre-op a remedy with a mixture of arnica, ruta, hypericum and calendula that I had been taking. She increased the potency for me whilst she was with me as I had found that this helped. I didn’t want to be too dependent on medication so was using this too.
I don’t remember much more about the Wednesday however Thursday morning, we headed over to hospital in plenty of time. Alison had warned me that the appointments do run over sometimes as people tend to have plenty of questions. We got there and there was a huge queue at outpatients and I started to get twitchy being worried that I was going to end up late. We headed through to the clinic and sat and waited for a while. After 20 minutes or so Alison popped her head round to speak to us. I was lovely to see her and felt really reassuring. From first meeting her and being introduced as ‘This is Alison. She is a specialist brain tumour nurse.’ I didn’t want a brain tumour so I didn’t want a brain tumour nurse. I felt very resentful to start with and had no inclination towards her. From that point, she became a very solid part of my treatment, along with Dr Alex when I was in hospital. I told Alison this and how we now both felt very reassured by her presence, especially when meeting new consultants and getting new and scary information. I think she was pleased to hear this as she said that most people resent her presence and she is only rarely thanked for her support. She had been brilliantly supportive to both Lel and I and we both felt easier knowing she was going to be in the appointment with us. Around 30 minutes later, Alison moved us through to a side room to wait, there were no windows and it felt like a broom cupboard. Another 10 minutes and Alison came to get us and moved us to a larger room where the appointment would be. This one had windows which felt much nicer and friendlier. I sat by the window next to the desk, Lel sat next to me. Dr T, a social worker and a student came through. She introduced herself to us, and said that Alison would be joining us soon.
Dr T asked for a brief outline of what had happened and how the tumour had been found - having told this on numerous occasions, I was asked to slow down to allow her to write notes. She then asked me lots of questions about my general health and how I was feeling at this time. She went over the details Mr Leach had told me about the tumour, that is was a grade III, she told me that there were quite a few grade II properties present - the size of the tumour, the fact that it was slow growing and the fact that when the contrast dye was used, there was very little contrast showed up on the scan however they wanted to treat it as a grade III therefore wanted to use radiotherapy and chemotherapy to prevent it growing further, (depending on whether there was a certain gene in the tumour or not influenced when she wanted the chemo to start and the sort of chemo required). They were still waiting on the results of the gene test which would be back in a couple of weeks. I would need a mask making as well as a CT scan and an MRI scan with contrast dye to allow clear assessment and a baseline as to what tumour was left. I would get letters to tell me of these appointments and it would be likely that my radiotherapy would start within 6 weeks or so however I would need scans - both CT and MRI before then as well as a mask making for the treatments. We went back up to the cafe where we had left mum and dad, updated them and then set off out bed shopping for the afternoon.
Lel and I had been talking for sometime about getting a new bed and I felt with the treatments coming up, I would be wanting something better than we had at the time, the had bought the bedroom furniture with the house but the bed was irritating at times (it had an odd habit of ‘tapping’ at round 2am and clicking when we rolled over), I was very determined that life goes on and it definitely will. I had been saying for sometime that we should take mum and dad to Cousins and this seemed as good an opportunity as any. We had a good wander round, found a bed we loved, then found another we preferred, then found one be both really liked that was even cheaper! We asked how long the lead time would be and were told 12 weeks however they advised against ordering for just before Christmas as things tended to be extended and arrive in the new year. Having found a base that we liked, we then went to Bensons for Beds as well as Furniture Village to try and find something similar for a good price that had a shorter lead time. There was nothing as good anywhere else, in fact everything else was at least three times as expensive and not as nice. Mum had the good idea of going back to Cousins to see if we liked the bed as much has we thought we had done on first sight of it, and we did. We both loved it. Dad suggested that I take my hat off and see if we could get some sympathy and get the bed within a shorter time frame. The salesman initially said that there was no way that we could have the bed any quicker as the frames are on a boat from China, I took my hat off and explained that I was going to be requiring further treatment following a brain tumour being removed and was going to need lots of rest and therefore needed a bed ASAP. The deputy manager was sat with the salesman and suggested that he call the manager to see what could be done. We sat and chatted for a while, he told me that his wife had had breast cancer some years ago and following treatment was now totally fine. The salesman came back over having made the call and said that we could have the bed frame that was on the shop floor for £100 less than the ticket price and could be delivered in 2 weeks. We started to look around for mattresses to see what could go with it and could be delivered quickly. Mum offered to get us the bed and mattress for Christmas, so we could get a better quality mattress. We ordered a good quality mattress partially stuffed with wool and hemp therefore of a more organic nature. The salesman sorted it all and got the order through, he waived the credit card fee as well as the split delivery fee only charging £20 for the delivery of the frame and mattress. The service from the shop could not have been better, we were both very impressed by this.
As we got home, I was shattered and went upstairs for a rest for a while until tea time. I was wiped out but felt that it had been a good day, we had a new bed which we had been after for some time and I had managed a whole day without a nap and didn’t feel too ill from it. Normal days merged into one, getting up, dressed and having juices. I continued to make Lel go for runs at the weekend to train for the half marathon, I was damned if this annoying tumour was going to stop her getting her aim of under 2 hrs.
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