The following morning I was due at my radiotherapy at 11 as I was the new person, we arrived early, 10:35 as I was petrified of being late and got stuck in the queue to get into the car park as unbeknown to us at that point, after about 9:30, the car park is so full it operates a 1 out - 1 in system, I was panicking that we were going to be late but we got through and parked in the bit reserved for Christies with no problems. I was called though to a side room by Paul, one of the operators who went through with Lel and I what was happening and what my treatment would entail, then asked to sit back in the waiting room. Soon after I was called through, Lel had to wait for me and it was explained that they would do a scan to make sure that everything lined up ok, then they would do the treatment. Prior to starting, they asked me my name, date of birth and address. I then lay on the bed with my head on a geisha style pillow and legs over a wedge, they then but my mask on and clipped me down before moving my bed 2.2 to the right, 2.3 up and 4.8 out. I have no idea what these measurements were but having heard them for 33 days, by the end of it, I could tell them exactly where the bed should be. This then meant that I was apparently post, sup and over to the right, on the right forehead where the laser points lined up for the treatment. There was some music on and I think I counted around 8 songs through before they came back through, unclipped me and told me that that was me done for the day! The same happened on the Tuesday, bar meeting Paul to discuss the procedure. Wednesday, a repeat of Tuesday however at the end of the session, Paul told me that they weren’t going to scan me for the rest of the week as they were happy that everything was lining up well for the sessions and my marks on the mask were spot on.
On Friday we had our first meeting with our review nurse, Nikki who we would be seeing once a week. She was very nice, we didn’t really have and pressing questions, I wanted to know when to expect any burning to my scalp as well as when my hair loss would start. She told me the hair loss would be likely to start towards the end of week 3, and the sunburn type symptoms in week 4 or so. I was already taking remedies from Sue D (my homeopath) to support me with the radiotherapy and at this point had had no side effects at all. The following week completed with no issues at all, until midway through week 3 when I started to get some hair loss on the side where the radiotherapy was going in. By the end of the week and my review, I was also getting some hair loss on the opposite side of my head. I was trying to use a calendula cream on my head but was finding it a bit thick to wash out of my hair as a preventative to stop any burning to my scalp although there had been no sign of this as yet. At the start of the 4th week, after a weekend of pulling hair out into a bin / bowl to relieve my boredom. I was getting slightly frustrated with waking up and finding hair on the pillow / getting handfuls of hair out in the shower when I was washing it so I asked Lel if we could shave my head, requesting to borrow Jon’s trimmers. On the Tuesday night of the 4th week, Lel bit the bullet and shaved my head for me. It felt so much better than it had been and, whilst I would now have a cold head, had at least taken control of what had gone on. I like hats and apparently I suit them, it also gave people a good idea for Christmas and birthday pressies!!
Em mentioned to me quite early on in the process Patricia Peat, an integrated health practitioner who used to be an oncology nurse however her fees were reported to be very high. However, one of Em’s contacts suggested a charity ‘YestoLife’ who provide the initial consultation with her for free. Mid October, I made contact with YestoLife to ask if I would be suitable for an appointment with Patricia. They sent a form through to be completed and told me that Patricia’s secretary would contact me in a couple of weeks to sort an appointment as she has a long waiting list.
As the weeks went on, Nikki and her colleague Sharon were very impressed with my progress and lack of side effects from the treatment. I had been told by the nurse at Christies that I would end up exhausted and struggling to get out of bed as well as suffering from bad sunburn symptoms on my head. I had asked Em for a calendula spray to use on my scalp and post shaving my head I had been using that and coconut oil on a nightly basis to moisturise it and stop and burns. Lel, bless her, was massaging my scalp every night and continues to do so. The only issue is that the pillow case and the buff I sleep in get really stinky!! Various people came to visit, Kath W, Sue R and Catherine B. It was lovely to see them but I did find it a bit tiring after they had gone.
On the 2nd of November I had a phone call from Hayley, Patricia’s secretary offering me an appointment on the 12th of December in Chesterfield, face to face which was brilliant! I arranged for mum and dad to be over to give me a lift down there. I was very excited as I felt that with the number of supplements I take, I want to make sure that I take them all at the right time of day and that non of them contradict the others, as well as making sure that none of the food that I am eating will cause a problem. Patricia felt to be the right person to help with this.
I went to see my GP at the start of week 5 (7th November) to get a fresh sick note. To be honest, by this point, had it not been for the radiotherapy I could have been back at work, however I wanted a bit longer off to allow me time to get over any tiredness that may happen as every one was warning me as a result of the radiotherapy. To this point, I was bored but knew that I was allowing myself time to heal and relaxing was the best way of doing this. I was offered another 8 weeks off work but requested only 6 weeks as I felt fine, also I didn't want to have too many months on half pay. I had also been searching for other therapies that may assist with shrinking brain tumours (since apparently mine incurable - I don’t believe in that word) and had come across hyperbaric oxygen as tumours feed anaerobically starve in oxygen rich environments. Around the start of week 2 of radiotherapy I had applied to use the MS therapy centre in Trafford Park and had taken the consent form to my GP for signing. Due to my GP dying just before all of this started (how blooming inconsiderate - I think he took his own advice, he always used to tell me to come back in 2 weeks time!) I was struggling to get someone at the surgery to sign it. Having sorted this and posted the form I waited for a response from the centre. On the 8th of November I got a call to arrange my sessions there - 20 sessions before Christmas, then one per week after that. Immersing to 33ft each time as this was described as the best level for the treatment of brain tumours. On Thursday in week 5 I headed over to the MS centre for my first treatment. I had been told it was over an hour therefore had taken a book with me as the thought of sitting for that length of time not reading did not seem overly exciting! As I write this now, I can definitely say that sitting for 1.5hrs is a long long time, 1hr at 33ft and 15minutes to get down to it, the same to get back up.
My radiotherapy continued with scans every Wednesday and reviews on a Friday. Nothing exciting happened except now I had no hair, one team seemed intent on telling me that my scalp was going red - the other team did not agree, neither did Sharon and Nikki or Lel. I had no idea what they were talking about, every night I was using the calendula and coconut oil on my scalp. There was no redness or dryness anywhere, I was not tired and was reading some fabulous books that have provided me inspiration for how well I am doing. I know that this isn’t going to wipe me out, since day one I have known that this isn’t going to be the thing that kills me - all of us will die sometime and all we are all trying to do is to extend our lives. I was also going for oxygen treatment 3 times a week and needing lifts from people on a daily basis. Catherine B, Alison and Kath W were incredible, along with mum & dad, taking turns ferrying me too and fro daily for treatment. Everyone at the therapy centre has been very friendly and, after Christmas when I go down to 1 session a week I’m going to miss the ones I don't see!
At the time of diagnosis we had told only those who needed to know - my work, her work and families. I had asked that she not tell her friends until after I had had my surgery as I didn’t want her hassling any more that she was already being by the families. I also said very clearly that it had to stay off Facebook and social media until I felt strong enough to offer other people support and talk to people about it. I feel that a large portion of my healing has been down to the support of others and would love to pay it back to other people who I would like to be able to help. I had told Lel that on the last day of my radiotherapy I would like to put something on Facebook, explaining my silence and lack of photos on there. During my last week of treatment I started to write the post, running it past Lel to make sure that she was comfortable with it.
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