Big Steve Big C

Tag: emotions

  • Christmas, but not as we know it

    I love Christmas. It’s always been my favourite time of year and has been since we had children. I’ve usually had a busy year and look forward to some time off (usually try to get as much as possible), catching up with friends and family and eating and drinking and generally relaxing.

    When the children were younger I was always excited for Christmas morning and the joy of watching them both tear through gifts and stockings with glee and then enjoying far too much food. As they’ve got older that magic has started to dim but we’ve always had a good time.

    I’ve never put pressure onto anyone that it must be perfect or that you mustn’t ruin Christmas, I just want an easy life with no stresses. Christmas can be stressful but we do whatever we can to make it easy. If that means I buy frozen roast potatoes for example then so be it.

    This year, Christmas 2020 is proving to be a challenge. One where I’m struggling to find my personal Christmas spirit. The joy, excitement, “the sparkle”… is nowhere to be found. Yet.

    What with Covid restrictions stopping having friends round, packed shops and streets with Christmas decorations and lights are out of bounds for someone supposed to be shielding.

    This and the overwhelming dread of what my upcoming scans will find mean my mind and my body just isn’t feeling Christmassy.

    I don’t even have holiday from work to look forward to. I’ve been off work sick since September and have done nothing but “have a break from work” since then. If anything I want to get back to work for some normality.

    Its not helping either that since my diagnosis I’ve stopped drinking alcohol completely. Not through any medical advice, I’ve just not fancied it. This time of year there would normally be plenty of pub lunches, a few beers and an occasional whisky.

    We went to a garden centre (yes I’m supposed to be shielding but this was a tradition!) at the weekend to buy the annual Christmas baubles for the girls and usually this would be the first time I’d feel a bit of seasonal excitement. I just felt sad.

    Back in September I’d convinced myself I wasn’t going to see Christmas this year. There in the garden centre I felt sad thinking what if it’s my last Christmas. It took a lot to hold it together and not burst into tears.

    I took the dogs out for a walk last night just around the local streets and passing dozens of houses with an array of brightly lit Christmas lights, projections and decorations. Something that would usually get me “in the spirit”. But there was nothing. I got home and felt so sad, and a bit sorry for myself. When I went to bed I broke down in tears as, all to frequently these days, it all got to much.

    Tomorrow is Rhian’s 25th birthday and usually marks the start of us really preparing for Christmas. We’ll put our tree and decorations up at the weekend.

    We have a beautiful fake tree that we bought the year Rhian was born (1995) and it still looks great when decorated and this will be it’s 26th year.

    The tree decorated for Christmas 2019

    I’ll watch as Katie takes the lead in decorating and ensuring perfect bauble placement. We’ll probably watch some cheesy Christmas films and I just hope that somewhere, deep down I can start to look forward to and enjoy Christmas.

    From 2018

    I don’t want it to be perfect. I just want to enjoy Christmas. I need to embrace it with both hands and try and stop worrying. Difficult, I know but if not for me then at least for everyone around me.

  • Ever have one of those days?

    I fully expected the day after my 4th round of treatment to be spent dealing with a bit of flu, hot flushes and tiredness but hadn’t expected to also have to cope with feeling particularly fed up generally down. Full on grumps, feeling sorry for myself. Whatever you want to call it.

    As usual I had no energy and I wanted to get out for a walk but just couldn’t be bothered. Everyone was carrying on as normal and I just wanted to curl up and hide.

    Luckily our dogs Meg and Winston are good at picking up moods and can often lift mine just by being there. This worked on Friday morning for a bit.

    It didn’t last long though. It probably wasn’t helped by a row the previous evening between some other family members that really upset me. I’m well known for being grumpy quite often and I know I can be but every now and then it happens and I just don’t know why.

    People know not to ask “why are you being grumpy?” As that never helps.

    This low mood carried on to today, Saturday and everything was getting to me. In the end I forced myself to go out for a walk. But that didn’t help either. I just wanted a quiet walk and everywhere I went was rammed with people. I drove to a few spots then gave up and went home. Sometimes I just want to be alone.

    The dogs still tried to cheer me up.

    image

    In the end I just wanted to be on my own so went to bed at about 7.30. I still don’t know what the main problem is but I know I’m not happy about whatever it is. I hope a good nights sleep might help.

    I’ll put it down to hormones being messed around by the treatment.

  • But what if…?

    I should be used to this by now but this morning I woke full of dread. Scared about today’s 4th round of treatment and worried what will happen if it’s not working for me.

    I know it makes no sense but common sense has never been around when anxiety strikes. I’ve had to try quite a few coping techniques that I’ve not used for a while. Today I used the “what if” technique.

    This is where you take the subject of your anxiety and worry and assume it’s true and ask yourself what will happen if you’re right. That will take you down a path to a conclusion. Then you ask what if again. And you keep challenging yourself at every conclusion.

    The aim is that eventually you get to a point and say “what if” and the answer is “nothing bad“

    Winston Churchill called his depression his “black dog” as a way of giving it a physical manifestation and allowing him to control it rather than allowing it to control him. But even he had days where it got too much so that he couldn’t even get out of bed.

    I have to remind myself that I’m not the only one dealing with anxiety and depression and that when you throw cancer into the mix it’s ok to have down days.

  • Gearing up for round 4… and worrying

    “A bit weird.”

    That’s how I feel so far this week. I wake up most mornings with a croaky or non existent voice. Ready for a good nights sleep even though I’ve just woken up. But also creeping in this week is worry. I wake up then start to worry about the treatment. Is it working?

    I’m hyper vigilant over niggles, pains or anything different in my body so assume anything unusual means the treatment can’t be working. I’ve been getting small amounts of chest pain first thing so that must mean it’s not working. It couldn’t be anything else!

    I had my bloods taken yesterday as usual for treatment week and this was the first jab that really hurt and gave me a small haematoma on the back of my hand. A sure sign the treatment isn’t working! Despite the fact it had gone after a few hours I’m looking any anything and seeing it as a sign.

    The truth is that it is still going to be six weeks before we find out whether immunotherapy has been successful and I think this worry could get out of control if I don’t check it and acknowledge it now. the last thing I want is to have this as all I think about, especially over Christmas and New Year.

    It’s a viscous circle. I can’t do much because of the fatigue and the mind has time to rest and wander. This is when the worry peeps over the wall. I need to keep busy to keep my mind busy and stop it wandering. I still haven’t found that balance yet.

  • A strange few days

    We’ve all been feeling good (within reason) for a few weeks now, almost normal you could say. On Friday we met one of the nurses from Phyllis Tuckwell who wanted to explain what they would be able to do not just for me but for all of us. As the conversation moved quite openly and freely we suddenly hit some subjects we weren’t prepared for. No fault of anyone just the natural flow of conversation.

    Wham! The realisation that my cancer isn’t going anywhere came back and knocked me and Katie for six. While we hope that the need for caring, hospital bed, regular nurses etc is years and years away. It’s there, in the future somewhere.

    It was during these last few days that friends started planning next years motorbike trip and I made a blog post while on quite a downer.

    But! We have great friends and support network and they’re doing their best to pick us up out of this brief slump.

    I’ve booked my hotel for my bike trip next June! And am honestly looking forward to it. We’re going to book some time away for Katies (50th – ssssh!) birthday in March.

    While we’re not going to stick our head in the sand regarding the cancer we can only deal with the here and now. Right here and now we’re doing well.

  • What the future holds

    When I first got my cancer diagnosis I did what apparently most people do when they get the same news, I went to a very dark place and assumed I was going to die in a matter of days or at most weeks. I had 2 weeks of assuming the worst before I spoke to a consultant with the treatment plans who mentioned years.

    Stupidly, I even started worrying that I wouldn’t get to see the full series of Long Way Up, the latest motorbike adventure by Ewan MacGregor and Charley Boorman. Their first two series from 2004 and 2007 are what got me into motorbikes and annual trips into France and Germany with friends. Apple TV+ was releasing one episode a week.

    Knowing “years” was initially comforting but as the weeks have gone by some of the darkness has crept back. What does years mean? Will I see 60? The statistics say no. Do I actually want to know, should I just live everyday as if its my last. I usually trying and push it aside with some positive thoughts about the here and now.

    Now, friends that I usually travel with each year for an annual motorbike trip are planning the 2021 trip. The 2020 trip was cancelled due to Covid and everyone is hopeful that vaccines and controls will mean a 2021 trip is possible. That’s not stopping them from making sure their bookings are refundable though.

    Now what do I do? I have no idea if I will even be here, yet alone be able to ride a motorbike or go on a road trip. This makes me really sad and angry at firstly the cancer and then covid. I’ve been going day to day feeling ok recently. Almost normal apart from the tiredness but then this slaps me hard as a wake up call. I still have cancer and my future is uncertain.

  • Palliative care, a phrase that strikes fear

    When I saw Professor Pandha a few weeks back to get my confirmed diagnosis he was clear from the outset that the cancer is incurable and all we can do is manage the symptoms and maybe control the size.

    He used the phrase palliative care. This was the first time it had been used alongside my cancer and immediately I was filled with dread. To me I’d assumed this meant someone is dying and this was the type of care to see them through to the end of their life.

    In the weeks since then I have educated myself and now understand that palliative care is not the same as end of life care. It can form part of end of life treatment but is also treatment in its own right.

    I’ve been already been talking to staff from Phyllis Tuckwell hospice from Macmillan nurses to help with symptom and pain management and Physiotherapists to help with lung and breathing exercises as well as getting me moving more.

    So palliative care is a good thing and is not something to be scared of.

  • Feeling like a fraud

    I had to go to the pharmacy to pick up yet another prescription earlier today and it highlighted something I’ve been thinking the last few days.

    I feel like a fraud.

    Now that the pain is under control, the side effects from the last treatment are tailing off and I’m making a concerted effort to move a bit more I can’t help think that to anyone else it looks like there’s nothing wrong with me now.

    I’ve not worked since the start of September with my second “fit note” now signing me off until the end of the year to allow me to complete all 4 treatments in the first round along with the follow up scans and tests.

    I feel really guilty not working, especially now there are no obvious signs of what’s actually going on in my body right now. So what if I’m tired? Lots of people get tired. So what if I get out of breath just climbing the stairs? I sit in a chair all the time I’m working.

    I have to remind myself of just how bad the pain was just a few weeks back and the massive amounts of opiates I’m having to take to suppress it and also the battle going on inside my body with my immune system attacking the cancer cells.

    Is this what immunotherapy is like inside my body?! (c) Marvel

    I’ve read in numerous documents that side effects from the immunotherapy treatment can happen at any time and the risks increases the more treatments I have. I also know that my concentration levels are virtually zero at the moment.

    So on the surface I may look fine right now but this can change suddenly.

  • Bringing the blog up to date

    All of my posts so far have been backdated to the actual dates of events but now we’re pretty much up to date. The feedback on my blog has been overwhelmingly positive so thank you.

    I had my 2nd immunotherapy treatment on Thu Oct 15. There was a long wait of over an hour between the first drug going in and the second one. Apparently this is due to the pharmacy only making them up on the day and just being very busy. This is quite normal apparently I was just lucky that it was quicker on the first treatment.

    The only noticeable side effect from the 2nd treatment was some hot flashes a few times a day for an hour or so. No way of controlling it other than open windows, fans and wearing shorts all the time to try and stay cool. These lasted just over a week before fading out.

    The fatigue and constant tiredness is there still and I’ve had days where I’ll have a sleep, be awake 20 minutes then need another sleep. I keep being told this is your body fixing itself. I hope so!

    I’m getting into a routing of taking drugs and pain meds every day and have had no ill effects from the morphine dose I’m on (60mg twice a day).

    I’ve also had a few phone consults with a physiotherapist from Phyllis Tuckwell too. She’s trying to help me get my breathing and lung use back to normal. I’ve had a couple of months of not breathing deeply and fully using my lungs and have to be reminded to keep breathing to full capacity.

    She also wants me building walking stamina up. I’ve spent a lot of time recently just lying still and moving as little as possible to avoid pain so I’ve got to start gentle walking again and get moving before I get long term muscle and joint issues.

    This last week I started with 0.6 miles, then 1.2, 1.6 and yesterday 2 miles. I feel I may have gone too far too fast as my knees have gone all stiff over the weekend. I hope its the walking as joint pain is also a potential side effect of the immunotherapy.

    I have my 3rd immunotherapy treatment next week which means I have to have a blood test on Monday, a consult on Tuesday and then the treatment on Thursday.

    As a family we’re holding up well. Occasionally the emotions spill over but that’s ok as we support each other and have lots of friends and family looking out for us. We have so many offers of help but realistically there’s not much people can do.

    I still ask that people don’t feel sorry for me. Don’t give me that sad look when you talk to me. Be normal. We can talk about it, it doesn’t have to be the elephant in the room and its much more comfortable to just be at ease talking about cancer. Yes its shitty bad luck but we can laugh and joke about it too.

    I’ll finish this post with an example. A few weeks back right when my cough was causing me grief I was having a particularly noisy coughing fit on the sofa in front of the family and Rhian says, completely straight faced,

    “will you die quietly!”.

    I laugh out loud and so does she. 😂 You have to find light in the darkness.

  • Pain Management Journey

    The days following my first immunotherapy treatment and hospital visit were overshadowed with one thing. Pain. It was all encompassing and anyone who’s had chronic pain knows that this takes over your life.

    I don’t like pain, I don’t think that’s unusual but I would do anything possible to avoid pain. When I first discovered I had cancer I told Katie I didn’t want to be in pain. When talking to the medical staff I said the same and they all dismissed it as something I didn’t have to worry about as pain was easy to manage.

    Having pain that’s there 24×7 and is tied to my breathing so is something I cannot avoid became unbearable. At times I got so low I just wanted someone to switch me off. Added to the chest pain the unwelcome return of my cough was also adding to pain. I just became so tired and exhausted.

    I’d been given prescriptions for all the meds I needed and as mentioned before I was already maxed out on codeine and paracetamol so had to manage the pain with oramorph. This was taken as a 2.5ml syringe of liquid into the mouth.

    I started off adding 2.5ml a few times a day. After a few days this became 5ml every 4 hours. I noticed that the higher doses seemed to dull the pain fairly quickly but it never lasted more than 2-3 hours. I was also very very conscious of the side effects of morphine. Not least being how addictive it could be. Opiates are strongly regulated for a reason.

    After finding out what the maximum amount of morphine I could take each day was it took me another few days to reach 10ml of oramorph every 4 hours. The issue was that before the next dose was due the pain would come back. I was now maxed out on oramorph and didn’t know what to do. 60ml of oramorph equates to 120mg of morphine. I was also getting side effects of morphine with cold sweats, headaches, dizziness and a general feeling of being out of it.

    The pain was exacerbated with the coughing. The coughing fits got worse and more aggressive with me getting the point of nearly blacking out on more than one occasion. Progressively I added to the chest pain with muscle pain around my ribs and chest where it felt like I’d been repeatedly beaten. This culminated in one really bad bout of coughing one evening where I was in tears and fighting for breathing and trying my hardest not to hyperventilate. It lasted about 30 minutes before I got it under control. Warm orange squash with honey seemed to help.

    The morning after the coughing fit I was in excruciating pain whenever I tried to lie down. I couldn’t lie on my back or sides and was convinced I’d cracked a rib or something. There was so much pain at the bottom of my ribs in my back.

    For the rest of the day I felt so helpless, trying to sleep sitting up, but couldn’t, exhausted to the point of tears. Katie was desperate to help me so reached out the to Macmillan Nurses at Phyllis Tuckwell hoping for help with managing the pain.

    We got some advice on changing the morphine doses as well as an appointment with a specialist pain Doctor on Thursday (it was now Monday afternoon.)

    I was told to switch the oramorph to a smaller dose but to take it more frequently. So take 5ml every 2 hours, 24 x 7. I was desperate and was happy to set a timer every 2 hours if it meant I could manage the pain. I started at the very next dose, 5ml. 2 hour timer.

    I continued to take the morphine every 2 hours, including waking myself up over night. The following morning I was amazed that the pain had dulled significantly. Also the cough had died down a lot too.

    By that night the pain had gone completely. I’d forgotten what being pain free felt like it had been such a long time. The down side was that having morphine constantly in my bloodstream made me high as a kite. It wasn’t a bad feeling but I knew this wasn’t something I could manage long term. For now I didn’t care.

    I’d worked out that with the codeine and the oramorph I was taking about 155mg of morphine a day. This was a lot, I knew that. So did the pain Doctor I saw on the Thursday that week.

    She spent a long time with me and Katie and came up with a plan of switching to slow release morphine. This was easier to manage as each dose lasts 12 hours, it is usually tolerated better by the body. The plan was to switch to 50mg of morphine twice a day. Oramorph could still be used for breakout pain and if needed we could go to 60mg. I would also still be taking paracetamol.

    I got the prescription and started to take the meds on the Thursday night. 8pm 50mg and fingers crossed.

    8am and another dose taken along with 5ml of oramorph. I was disappointed but the Doctor was going to phone me later that morning. She told me to switch to 60mg from now on.

    And that was it! The next day there was no pain, no oramorph. I didn’t feel as groggy/stoned as before and the pain had gone completely. It took a few days for me to be brave enough to start taking full deep breaths again. I was constantly expecting the stabbing pains but they never came. It was such a relief.

    As I write this (Oct 26th) I’ve been on this dose of slow release morphine for around 3 weeks now and I’m happy to say the pain is still under control.