Big Steve Big C

Author: steve

  • Back at it

    4th January 2021. It’s nearly 4 months since I discovered I have kidney cancer. 4 months where the world has just been a blur, a rollercoaster of emotions and feelings and pain and tears and plans and hope and medication and appointments and phone calls.

    We’re now into a new year and I need to accept this is the new norm now. My cancer cannot be cured but right now it is something I can live with, with just a few reminders that it’s there.

    I started back at work today, albeit in a much reduced capacity for now, hopefully I will be able to get back up to full speed in the not to distant future but I won’t lie, the last few days before starting back have had my anxiety at full alert. Terrified of what’s changed, can I still work and do my job, what if I can’t?, can I stay awake? am I still useful?

    On top of this, I still haven’t had a CT scan so still do not know if the immunotherapy is working. We’re continuing treatment as if it is, with a blood test today and a consult tomorrow but without knowing if it’s working what can the consult possibly tell me. If it’s not working then we’re wasting time by not switching to a new treatment. I will have the first of the single, monthly immunotherapy treatments on Thursday afternoon.

    I just want to know if it’s working or not. My life literally depends on it.

    Anxiety is my biggest issue right now, it’s affecting my sleep, my appetite, my concentration. Work, treatment, health, all add up. I’m having to dig deep into my coping techniques and sometimes they work, other times they don’t.

    If people stopped being so stupid and selfish then we wouldn’t be having this rise in Covid numbers again and I could at least lose one of the reasons for anxiety. I see pictures on social media of friends, intelligent friends, completely ignoring social distancing. I want to scream at them “you might be killing me!” .. but what would be the point.

  • 2021, I have high hopes for you

    I didn’t think I was going to enjoy New Years Eve 2020, but surrounded by my most important people, I had a lovely evening. We played some silly games, I had a couple of small beers and we watched the fireworks and drone show from London on TV.

    I did find myself strangely emotional watching the drone show and fireworks, they caught the moment and caught me off guard when reviewing 2020 and looking forward to 2021 and I found myself crying quietly amongst the noise and flashing lights from the TV. The first tears I’ve shed since before Christmas Day which is surprising.

    I know it’s been a tough year for a lot of people, with Covid making all the headlines and affecting everyone. Some falling ill, some losing their livelihoods, some struggling with mental health while others just doing their best to get by. I’ve seen some stories of friends overcoming all sorts of obstacles that life has thrown at them as well as facing challenges just as difficult as me.

    My Cancer diagnosis in September has obviously been my personal focus for the last 4 months and there have been days I’ve been very ill and days where you couldn’t tell I was ill. However through it all I have been surrounded by amazing love and support from Katie, Kira and Rhian as well as family and close friends. I’ve also been supported by Phyllis Tuckwell Hospice, the staff at St Lukes and Frimley Park. Just as importantly my employer and my Boss has been incredibly supportive with no pressure on me to do anything other the look after number one.

    Next week I plan to start back at work in some form although I’m not kidding myself that it will be a few weeks before I can get near to “normal”, if that even exists any more.

    I also have the first of my “single” immunotherapy treatments. Blood test on Monday, consult with my oncologist on Tuesday and hopefully (it’s not been confirmed yet), treatment on Thursday.

    I’ve tried really hard over Christmas to remain positive and upbeat, take time to chill when I need it but not to get wrapped up in self pity. I think I’ve succeeded as we’ve had a nice time. It’s hard when we can’t get out and socialise and the 4 walls start closing in but we’ve all been patient with each other and made the most of what we have. A few times I’ve felt close to tears but then take a step back and look at everything I have to be thankful for.

    I’m still here, I feel ok, I have amazing support, a beautiful family, I’m financially secure. I can’t really ask for more than that.

    I have lots to look forward to in 2021 and lets face it it’s going to be hard to not be better than 2020. I want to get back to work to keep my mind busy, I want to find out that the treatment has been stopping the cancer from growing, I want to ride my motorbike, I want to see friends start their families, I want to drive my Tesla, I want to see the back of Covid and the return to normal daily life.

    Most of all I want to be able to be fit and healthy enough to enjoy the coming year.

    I have one resolution for 2021. I want to be here to make resolutions for 2022.

  • Well that was…… normal šŸ™‚

    Despite what has been the worst year known to man, for most people, and not being able to spend time with as many people as we normally would, we have had a wonderful Christmas.

    Sure, we may have overcompensated somewhat with the amount of presents, and I think we were helped by Steveā€™s positive last post, but all in all, we have had a very…. normal Christmas, just the 4 of us.

    Steve did his usual amazing job with the Christmas dinner (with roast potatoes cooked by the youngest). Walks were had, drinks were drunk, the queen and call the midwife were watched, naps were had on the sofa, and games were played.

    Perfect.

    Steve continues to feel well, and apart from the pain meds you would barely know there is anything wrong with him. The chronic fatigue disappeared with the change from morphine, to the extent that he is actually now finding it difficult to sleep.

    He still gets out of puff easily, but despite the continued lack of CT scan (thank you Covid :() I am hopeful that once we do get it, it will show that at the very least we have managed to stop the cancer in itā€™s tracks, if not beaten it back somewhat.

    Come on 2021, weā€™re holding out for you to rescue us!

  • Merry Christmas

    I have the best present of all.

    Iā€™m still here, still fighting and planning to annoy everyone for many more Christmases to come.

    Thankyou everyone for you kind words and support so far. It means a lot.

  • Looking for positives

    2020 has sucked. Big time. But if you look between the crappy headlines there is positive news to be found.

    For 3 years the first digit of my weight in pounds was a three. Even at 6ā€™8ā€ tall thatā€™s too heavy.

    I lost quite a bit of weight at the start of this cancer journey and the medical staff started to worry but it did stabilise after a few weeks.

    Since the middle of October the first digit has been a 2 and Iā€™ve maintained my weight to within 1lb for the last 3 weeks.

    Clothes fit better and people have noticed. Iā€™ll take that as a positive. 2020 is not all doom and gloom.

    Other positives:

    I have an amazing support Team

    Plus two soppy dogs who are always there when you need them (and when you donā€™t)

    The elf on the shelf finally met its match

    And all the important food arrived in the shopping delivery yesterday.

    I saw Santa while looking for Jupiter in the sky

    Merry Christmas Everyone. Iā€™ll speak to you on the other side.

  • Damn coronavirus

    For the first time this year, Covid has really screwed with my plans. Unfortunately in a way that could affect my illness.

    I was expecting to have an appointment for a new CT scan any day now so we can see if the treatment has been working. Unfortunately, due to covid, no CT scan appointments are currently being booked. Thereā€™s no indication how long this will go on for.

    This means that when I have my consult at the start of January 2021 we will have no indication of whether the immunotherapy has worked or not.

    Iā€™ve been told that theyā€™re going to assume it has been working in the absence of any other information and also because my symptoms have not got worse over the last few months.

    This offers little comfort as we could be missing the fact itā€™s not working and moving onto new treatment sooner rather than later. I want to be confident but that niggling voice at the back of my mind is saying ā€œwhat if itā€™s not working?ā€

  • ā€˜Tis the season…

    Itā€™s been a strange week since my last blog post. Weā€™ve put up our tree and lights and Iā€™m starting to feel a bit more Christmassy. A few Christmas films have been consumed, along with some mince pies and my first beer in 4 months.

    But this week has been dominated by two things. Bloody COVID again. The south east of England is seeing another major spike and apparently a new strain. The U.K. government isnā€™t handling things well introducing last minute changes, confusing tiers and generally buggering up Christmas for millions.

    Selfishly for me, Iā€™m concerned how this impacts my CT scan and ongoing cancer treatment as lots of hospital treatments and operations are now being cancelled. Katie is expecting that work for her will creep in over the few days she had off as all their emergency procedures are coming back into play with daily emergency meetings being called every day, including weekends. I have to call the CT department this week to see whatā€™s happening with my appointment.

    The Covid restrictions donā€™t really impact our Christmas plans much but I know a lot of people who are not going to be celebrating with their loved ones due to this pandemic. I really feel for them.

    The other focus this week has been wellness/fitness for me. Itā€™s been… odd. One day Iā€™ll feel absolutely fine, as if I had no illness at all then I have a few days with no energy, even simple walks become exhausting again. Then be ok again for a day.

    Iā€™ve had joint and muscle aches and really struggled with sleep. Since coming off the morphine and switching to oxycodone my sleep has been terrible. Iā€™m tired but just cannot sleep due to aches in my hips, knees, back, elbows. Pretty much anywhere.

    Iā€™ve now had at least 4 nights where Iā€™ve seen 5am before falling asleep. This then screws up the following day. I plan on speaking to the Macmillan nursing team tomorrow to see if these are normal side effects of the switch and if anything can be done.

    What I crave more than anything is consistency. The changing symptoms are hard to deal with when youā€™re used to feeling a bit better.

  • Christmas, but not as we know it

    I love Christmas. Itā€™s always been my favourite time of year and has been since we had children. Iā€™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 theyā€™ve got older that magic has started to dim but weā€™ve always had a good time.

    Iā€™ve never put pressure onto anyone that it must be perfect or that you mustnā€™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 Iā€™m struggling to find my personal Christmas spirit. The joy, excitement, ā€œthe sparkleā€… 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 isnā€™t feeling Christmassy.

    I donā€™t even have holiday from work to look forward to. Iā€™ve been off work sick since September and have done nothing but ā€œhave a break from workā€ 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 Iā€™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 Iā€™d feel a bit of seasonal excitement. I just felt sad.

    Back in September Iā€™d convinced myself I wasnā€™t going to see Christmas this year. There in the garden centre I felt sad thinking what if itā€™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 ā€œin the spiritā€. 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 itā€™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.

  • Forgetting how to breathe

    For the last week or so Iā€™ve been noticing some aching when breathing in. When I focus on it it seems to be an ache at the fullest part of the in breath.

    It feels like my lungs have shrunk and are protesting at being asked to fully expand. Itā€™s more like a muscle ache than a sharp pain. Itā€™s also worse first thing in the morning.

    When I relax and focus I can see Iā€™m not taking full breaths. Almost like subconsciously my body knows it might hurt if I do, so stops. I guess like any part of the body if you donā€™t use the full range of motion regularly then when you try to extend that motion your body will ache.

    So Iā€™m really focusing on breathing exercises and 3 or 4 times a day making sure to take some really deep breaths for a few minutes. It seems there are gadgets to help with this now. Iā€™ve asked my physio if these are worth investing in as they seem quite expensive.

    Iā€™m obviously hoping itā€™s just conditioning and exercise and not a sign of progressing illness in my lungs and will continue with that assumption until I know otherwise.

    More fresh air and walking is on the cards and Iā€™ve had a great response from friends wanting to accompany me. Who knows I may even get out on my bike before too long.

  • Mixed feelings about this

    This arrived yesterday…

    And I have mixed feelings about it. I have no obvious disabilities and would feel guilty using this on a daily basis but having had a few occasions queuing around a hospital car park while dozens of disabled bay are staring, gloating at me where I’ve thought why can’t I use those.

    They’d stop me turning up for appointments panting and wheezing like a steam train.

    More of a concern is that its another tangible sign that I’m not my normal self any more and no amount of denial can hide it. I don’t like being unwell and have always been able to look after myself so it’s the acceptance that’s still just out of reach.

    I guess I should take anything that makes life easier with open arms, whether its a badge, some form of benefit entitlement, offers of help and swallow my pride.