Today has been a sort of watershed moment in this whole cancer episode. After trimming the edges and buzz cutting my scalp in an attempt to make it look respectable I eventually capitulated and have gone for the full on breaking bad bald scalp. I knew it would get to this point eventually but capturing my reflection in the mirror a few times today hasn’t made the process any easier as my paler than pale skin has a ghostly gaunt appearance. The entire package isn’t that appealing at present but at least I’m no longer a Ginger. Today also marks the successful completion of an expedition to Ben Lomond by a group of friends who are helping to raise money for MacMillan. On the 22nd April they plan to climb Ben Nevis and today’s expedition was a timely reminder of what will be involved when they tackle Britain’s tallest mountain. I have struggled at times physically and psychologically during my time with cancer and each time I have turned to MacMillan no problem has been too large and anything that the girls could do to get me on a normal keel has been the usual reaction. For that I am entirely grateful however it was decided by my friends that they would take this opportunity to raise funds specifically for MacMillan through their walking venture and with only a couple of weeks to go, it looks like the team are now functioning well with the successful ascent of Ben Lomond.
The team are on course to reach £10,000 of sponsorship for MacMillan and my heart pours with joy at the thought of the guys putting in the effort, pulling muscles, straining joints in an effort to raise such a large amount of funds. I know there will be lots of sore knees and other problems tonight but I hope the team enjoyed the adventure and are looking forward to the big one.
If you appreciate the services that MacMillan provide and would like to help support the effort, the Just Giving page will be available for another few weeks in order to donate. Good luck to the team and fingers crossed that the weather allows for an event free ascent.
I do realise that there has been a lot of water under the bridge since my last update and whilst my friends have been slaving away at raising funds on my behalf, I have been largely hidden away dealing with a number of obstacles that have been thrown my way. The fact that the guys have been over active today has shamed me into action and I now have the need to get the events of the last couple of weeks out in the open ..... here goes nothing ...
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I once noted somewhere in these blogs that I thought that dealing with Cancer was a bit like ballroom dancing, imagining that myself and some twisted mutation would be doing some sort of a Tango at the Blackpool Tower ballroom with me spinning the malformed tumours into oblivion as fast as I could. It didn't take too long to understand that the relationship wasn't a friendly one and that the idea of a dance was inappropriate as when the cancer decided it was taking you in a direction you didn't want to go, there was no negotiation available. In essence my ideas of a dance quickly turned into that of a game of chess and for every move the cancer would take, the consultants at Ross Hall would propose a set of counter manoeuvres that would keep me going for another month or so. Over the past few weeks this has certainly been the case.
Just to recap, I've now had 4 chemo cycles. 2 cycles were EOX which almost killed me with the side effects and never touched the tumours. I then had a single cycle of Herceptin, Taxol and Carboplatin which had limited side effects and for a couple of weeks I actually felt normal with no issues eating and no pain emanating from the tumours. Then something happened. I woke up one morning in a puddle of sweat and I felt sick throughout the day. I lost strength and my confidence went through the floor. I then started to have big problems with the tumour in my gullet and I couldn't eat anything without it becoming stuck. This had a major impact into my psyche as at this point I thought I would never eat again and that soon after that I would be no longer part of the party. The only hope left for me at that point was that the chemo treatment would help alter the size and shape of the tumour and that I would get some dietary reprieve.
I was back in Ross Hall on Monday 20th for the 2nd round of the Herceptin treatment. I had been called in on the Thursday to give bloods in order to speed up the process of ordering the medicines however there was a long delay until we actually managed to get things moving. On the morning before we left the house, Carol had applied the cream and the patch to my Port-a-cath which helps desensitise my skin so that when I eventually got hooked up there should be no sensation. In this instance everything went well and the nurse happily stuck a butterfly needle in me while I smiled and felt no pain what so ever. After getting hooked up, we started on the journey and that day the Herceptin was done in 30 minutes or so and then we were onto the next of the regime, Taxol. It was probably around 1pm and things were going oh so slowly. My room was full, there were nurses as well as Carol and Dr Yosef who was interested in my progress to date. He started by telling me that he had results from the bone scan but would get back to that in a bit. He was keen on looking at the cavity in my mouth where I highlighted that the tumour was changing size constantly. He put some gloves on and put a finger in my mouth. I immediately felt sick and started to wave to the nurses who were all busy changing IV bags and readying next procedures. Suddenly the room started to spin and I was aware that I couldn't get a breath. One of the nurses came back into the room with a sick bowl only to realise that my face was purple and that I was taking an allergic reaction to the Taxol dosage. At this point there was a call of 'Nurses! Nurses!' and immediately the room was filled with senior staff nurses who were now all heavily interested in the lack of oxygen. I felt light headed and couldn't breathe. My heart was racing and the next I knew I was naked from the waist up, nurses mopping sweat from me with one nurse holding an oxygen mask on me, coaching me with my breathing. In the corner of the room another set of nurses were packing a multitude of drugs and through a controlled set of communications the drip was altered and I was administered medicine that brought my heart rate down and eventually allowed me to breathe.
The incident that transpired was a known side effect. Generally when chemo is administered, you have accompanying meds that combat sickness, fatigue and allergic reactions. In this particular case the anti histamine I was given either had not had time to kick in or had worn off but for whatever reason it sent me into an allergic shock which I would not like to go through again any time soon. Again the nurses at Ross Hall were fantastic and they made me comfortable before assembling again to form a new battle plan for the treatment. Carol and I just waited in the room for the news to be fed back.
Some time later Dr Yosef came back to the room. This time it was a much quieter affair and he did his normal examination of my tumours pointing out that things were getting smaller as usual. Dr Yosef says this often and I'm not always convinced that this is the case however it is a little shot in the arm and support the treatment and the direction we are moving on. It was at this point Dr Yosef reported that the bone scan results had came back positive and there was evidence of a tumour in my arm and my mouth as well as other 'bone' areas including ribs and spine. He noted that the fact there was no pain in my spine or ribs could mean that the other results were false positives however there was a need to look at the arm and my mouth. He advised that he had booked me in for another X-ray that day and that he would work with the Beatsons unit in order to book me in for radiotherapy firstly on my arm and then at some point on my mouth once he had organised a CT or MRI scan.
With the news of the bone scan and the radiotherapy sessions I had sort of zoned out. I didn't really know what the detail was or what all of this actually meant. The thought that we were in a game of Chess with the cancer rather than a dance came to the forefront of my mind and without really processing any of the detail I just shrugged my shoulders and said 'Fine, whatever we need to do'. I hadn't noticed at the time but the room had filled with nurses changing IV bags again and Mr Stuart had also now joined the party, he was wearing blue scrubs as he was obviously straight from surgery. Again the room was crowded and things were happening around me that I had no control over. The circus was back in full swing. Mr Stuart joined the conversation by suggesting that the problems with my swallowing food were not going to be cured by the chemo round and he recommended that I get stent fitted. Carol, Mr Stuart and I had already had this conversation the last time he operated on me and bust my oesophagus. It was a bit surreal as the nurses and Dr Yosef were all in the room but not part of the conversation. Mr Stuart was obviously between 'jobs' and he was keen on getting an answer from me as were the rest of the people in the room who probably felt as though they were listening in on some sort of soap opera. I was really weak at this point again. I had probably gone a week or so without proper food again due to the blockage. I had spent a week at rock bottom again as I thought the end was near due to food processing problems and at this point, after having fought off the Taxol reaction and processed the bone results, I just wanted to curl up into a ball and disappear again. I turned to Carol and said 'What do you think?' and without a waiting for a response I replied 'Yeah I think that's the right thing to do, lets go for it'. Mr Stuart was delighted, he said that he had booked me in for Thursday and he would see me then. He left the room and the nurses and Dr Yosef returned to their duties.
We left Ross Hall that night around 8pm after being re-challenged with the Taxol, this time it went ok. I also had a visit to X-Ray for a couple of pictures of my arm and visited the pharmacy to get my usual prescription of injections, anti sickness, steroids and other odds and sods. We drove home with no incidents and went to bed. There were no real side effects this time. My voice changed due to white blood cell variations and I was given iron as my haemoglobin had dropped but apart from that the only problem with this round of chemo was total lethargy. I spent a day in bed then one of the couch then back in bed again and before I knew it, it was Thursday and I was off to Ross Hall again for another procedure and an overnight.
My eating had been bad again and I think I was now skirting around 64kg or so. Apart from things getting stuck in my gullet, my teeth were loose and sore and occasionally a thrush, plaque or cell build up was causing everything that I ate to feel as if I was eating raw oats. By the time I got to my room in Ross Hall I was very weak and I just lay on the bed with all my clothes on, a hat and a puffer jacket. I was like that for a while until eventually a nurse came in to register us and Mr Stuart turned up to get the consent form signed as usual. I was nervous about the procedure based upon the last near miss however I think I was so devoid of energy or feeling that I just went with the flow, not really contemplating anything or analysing any potential outcomes. Mr Stuart reminded me a few times that I would have some discomfort even though I was trying to get him to commit to me that my fentanyl patch which had maxed out, would keep all the pain at bay. He reassured me that I would have some discomfort but he did it in his usual way with a soft spoken Irish accent that made you feel reassured.
Eventually someone came for me with a wheel chair and I left Carol in the room whilst I was wheeled to X-Ray. The procedure I was being offered was the insertion of a stent using the real time X-Ray equipment in order to help placement. Again the room was filled with technicians, nurses, doctors and others and I was introduced to various people whilst Mr Stuart organised things in the background. I met the anaesthetist and was hooked up to another cannula. Before I knew it there was a real burning pain in the back of my hand and then I woke up up in recovery where a student and a theatre nurse were discussing all the things that could go wrong with me and what emergency procedures would be required. Realising that I had come out of the anaesthetic I was reassured that I was ok and that the two were merely supervising my return to the normal world. Mr Stuart was right, I had discomfort, a lot of discomfort. I lay on my side on the bed feeling the pain of the stent whilst trying to burp to release some of the pressure that was building up. Mr Stuart came by and told me everything went well and that there was evidence of the tumour slowly reducing in shape. He wished me well and I was taken back to my room.
It had been planned that I stay in the hospital that night for observation. The deal was that if I could keep down water the next day I would be allowed to go home. That night was tough as I was sick on and off every 20 minutes or so with the blood from the operation. The usual circus was in town with Drs and Nurses trying to keep me as comfortable as possible with plying me with drugs and I was very happy to see the dawn break in the morning and waited for the visit from Mr Stuart to give me the all clear. At around 8am I got the thumbs up and not long after that Carol showed up and we were ready to go. We eventually left the hospital late in morning after having the paperwork complete.
I spent the weekend in a slightly uneasy state if I'm honest. My weight had crashed at this point to less than 64kg and I was very wobbly. I took the opportunity to follow the Brown Bears I was watching on Mountain Men and I hibernated for a couple days whilst I got some more confidence in my stent. By the time Monday came, I had an appointment already organised with the Beatsons for radiotherapy treatment and Carol and I found ourselves in the Gartnavel facility waiting to be seen by our next consultant. I had heard a lot of good things about the Beatsons facilities throughout Scotland. These facilities are generally considered to be world class and it wasn't difficult to envision a finely tuned machine organising and providing specialist treatment to a large population of cancer suffering patients. There was a nice calm feeling about the place. Nobody was rushing, everyone wore a beaming smile, the colours of the rooms were bright and illuminating and best of all there was a box of expensive Swiss chocolates presented before us. Even better than that, Carol and I were offered tea and coffee whilst we waited for treatment and our business manager offered to sit with us and go through the operating procedures, answering any questions that we had along the way. Again, just like the visit to the Bone Scan unit, this really didn't feel like NHS type services. Everything was punctual and organised, apart from a complete computer failure at one point, and the environment was just so uplifting that actually being in the building made you feel better. Anyway, our consultant came to meet us, he explained that the cancer in my fibular could fracture but his hope was with one blast he would put it out of commission and spare me the pain there. He took me to the simulation lab first were there were some nurses who drew tattoos on me in order to give guides for the positions of the final radiotherapy beams.
Loaded up with my tattoos, I was then directed toward the real deal radiotherapy room. I lay on a bed for 10 minutes tops whilst a whirring head unit moved around my arm shooting me with highly charged atoms of some description. Almost as soon as it had started the session was over and I grabbed my stuff, got changed, met Carol and made our way home. The rest of Monday consisted of me lying on the coach feeling sorry for myself as there were some residual pain effects of the radiotherapy but these didn't last too long and I was soon snuggling back into a nice routine of bed -> sofa -> bed with the occasional snack thrown in along the way to give me some energy.
For a long while I have been searching for the miracle shake that gives me a taste and leaves me with some well needed calories. We have a Nutri bullet and have came up with some good examples but the truth is that the convenience isn't really there. My biggest issue at the moment is that I can easily go off a food at the last minute and leave myself with no options and this further extenuates the problems with calories consumption. Carol however has managed to find Ensure and we have ordered a few different flavours now. Each bottle contains over 300 calories in a good way but we have been supplementing these with extra protein and full fat milk. One of these and a bottle of orange juice first thing in the morning seems to be a good way to start the day.
So by Wednesday last week I was almost back on the normality tracks again however there was one issue I was still having with my mouth. It almost seemed that the cells in my mouth were dying and that these were collecting on food whilst I was eating and essentially everything I ate tasted like saw dust. When Shona had visited I suggested to her that this could be Thrush again however she thought that this was just an abnormal plaque build up and suggested if I could use a salt water rinse to see if that would help in any way. I tried and it helped. By Thursday I was eating normally. Nothing was getting stuck and I was on a mad binge around the house to eat as much stuff as I possibly could.
So it's now Monday 3rd April and my next chemo session is a week today. I meet Dr Yosef on Thursday when we go to give bloods in preparation of the Monday visit. Hopefully Dr Yosef will have two confirmations - firstly we are expecting a new regime to be introduced in order to combat the bone cancer situation. We also expect that the results from the CT head scan will be available for him to start organising the work at the Beatsons that will help combat the most tumour.
I weighed myself this morning and I'm back in the plus 70Kg camp. I'm not as wobbly and my strength is definitely coming back. I'm looking forward to raiding the kitchen again today and can't wait for tea time where Carol has been starting to excel in the last few weeks. All in all things are looking up .. roll on the next round of Chemo.
Allan (Bald as a coot) Andrew ........
