Big Steve Big C

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  • Fatigue isn’t the same as just being tired

    The biggest side effect of my illness currently is fatigue. I’ve never experienced anything like it even though I’m someone used to having naps and enjoying sleep but also experiencing being tired through not getting enough sleep in the past.

    This is not fatigue.

    I can only describe it as constantly having a phone battery at 5% and running in low power mode. Everything is an effort, almost in slow motion. I feel drained all the time, despite eating and drinking I have no energy. Despite sleeping for what seems like 99% of the time I’m still tired.

    I’m constantly told “its you’re body repairing itself”, which I guess is partly true. It not a great feeling though.

    I’m now struggling to make it more than an hour or so without some sort of nap and when I do have a nap I have to make sure I set some sort of timer for 30 minutes to wake me up. This is so I don’t lose hours by falling into a deep sleep. I did this a few weeks back, went for a nap at about 4pm and despite waking briefly a few times was in bed until 8am.

    And I was still tired after that!

    In an effort to control my sleeping patterns I’m now going to bed very early, usually by 9pm. The amount of fluid I’m drinking each day, combined with the fact I only currently have one functioning kidney means I visit the bathroom at least 3 times a night (that’s not helping the sleep either!) and then I wake around 8am.

    I’m informed that some of the fatigue is down to medication, some is due to the illness but some is also down to lack of fresh air, lack of exercise over the past few weeks. So I’m now making an effort to rectify some of this.

    I’m trying to get out walking most days. A few weeks back I managed just over half a mile and was a wreck. This weekend just gone I managed a mile at almost normal walking pace while holding a conversation. Progress is progress but I’m still a way off being able to take the dogs out for 3-4 mile walks.

    I hope the fatigue eases but compared to some of the possible side effects I could be suffering from I’ll take fatigue every day.

  • Treatment Week Number 3

    I should be used to this now for the 3rd one but I still have a lot of anxiety. Anything medical, hospital visits etc always worry me.

    The week starts today with a blood test that I’ve already had done at 10am at Aldershot Centre for Health. This is probably the 20th time I’ve been “stuck” since the start of Sept. I always have to explain that I’m an awkward bleeder and to use the back of my right arm or hand. Today’s was a good one, the nurse drew blood first time (probably only the second time that’s happened) and I really didn’t feel a thing even though it came from the back of my hand.

    You can tell when a nurse or phlebotomist is over confident as they always start with “I’m sure we’ll be fine” and go for the big vein in the crook of the elbow joint. Which for me is invisible. You see their confidence drop after the 2nd or 3rd stick. Always followed with a sheepish apology. I’m used to it now. Luckily I’m not scared of needles or blood.

    The Blood test will be sent to St Lukes Cancer centre today to be analysed ready for my consult with Professor Pandha tomorrow. Because of Covid this will be a telephone consult.

    He’ll ask me how I’m feeling, any side effects and look at the blood results for abnormalities that could indicate side effects I’m not aware of, eg with organs.

    Assuming all is ok, he’ll give me the go ahead for the IV treatment back at St Lukes on Thursday afternoon. That will be another 2-2.5hr outpatients treatment of the two IV drugs. Then we wait 3 weeks and do it all again.

  • “Limbo Land”

    4 days before 3rd immunotherapy session – over half way through the initial 4 sessions.

    One more after this one, then a scan – to see what effect the treatment has had on the tumours, and we’re hoping to see that, at the very least, they’ve not grown.

    This treatment carries on working for months after you take your last dose – you can expect new side effects any time up to 6 months afterwards – that’s quite some hangover!

    After the initial diagnosis and flurry of activity, which was entirely overwhelming for all of us, we’ve entered limbo land. The land that time forgot, the land where we can do nothing more than attend appointments as they come up, do what you’re told to do, and wait.

    Steve is relatively well, he’s still very tired and he feels guilty about the amount of time he is resting, but his body is literally fighting for it’s life, and that is exhausting. And I genuinely don’t resent him for that.

    But this waiting, this feeling of completely helplessness, of not knowing “what next” is hard. There is literally nothing we can do except sit and wait.

    And I’m not great at that.

  • 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.

  • “I’m OK, thank you”

    I think it’s easier if I don’t try and play catch up, Steve has notes he’s written from the start, I didn’t do that, so I’ll just write how I am doing, how we’re doing, from now.

    We’re 8 days after the second dose of immunotherapy.

    “How’s Steve?” I can answer that one. He’s tired. Very tired. He sleeps, a lot. I wake him up and get him a cup of tea and his morning meds before I go to work, and when I get home from work he’s usually back in bed, and either trying to sleep or asleep. I wake him up for dinner about 7, he eats, watches whatever we are watching on tv, and generally goes back to bed about 9.30. He’s got some odd niggles, but so far the side effects seem to be going relatively easy on him (touchwood, fingers crossed etc etc)

    “And how are you?” is usually the follow up question. And I don’t know. I genuinely don’t know how I am.

    I am sad. I am sad that it’s likely my husband isn’t going to be around for all the exciting times we had planned for when the kids didn’t need us anymore. For the trips and holidays we were going to have together. I am so sad for the girls, and for the big things in their lives that he might not get to see. I am sad that I don’t really get to see him. I’m sad that he’s going to die, and leave me on my own.

    I am cross. I am cross that suddenly my life, our lives, revolve around cancer. I am cross that this wasn’t the plan, we had kids young, we got a mortgage young, so that we could spent our middle age doing the things we didn’t do when we were young. We have 3 years left of the mortgage, we have both kids grown up and well able to fend for themselves, we had just begun to enjoy time away together. We had begun to settle in life as a couple again, and it was good, but now that future is unlikely to be long. I am cross at the disruption cancer (and Covid) has brought to the girls life’s when they should be having the time of their lives. I am cross. And I am sad.

    I am irrationally cross. I am irrationally cross that suddenly everything around the house, all the little jobs, all the dog walking, all the “getting stuff fixed”, all the boring, mundane stuff like emptying the bins and the dishwasher – suddenly everything is down to me. And I am irrationally cross with Steve about that.

    I’m feeling sorry for myself.

    And I’m feeling selfish about feeling like that. I’m not the one who’s got cancer, who’s being pumped full of drugs every 3 weeks to try and extend my life – and I know he’s not doing it for himself, he’s doing it for me and the girls. And I’m getting cross and slamming cupboard doors because….. well, last Friday it was because he’d been able to go out for breakfast, but he hadn’t emptied the dishwasher.

    But generally, the answer I give to the question “and how are you?” is “I’m OK thank you” Because it’s easier, so much easier than going into all of the above. And because, compared to Steve, I am “OK”.

    Katie x

  • 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.

  • The floodgates open

    I only got home from hospital a hour ago. Katie and Kira have been to Sainsbury’s and got me some lunch and lots of kefir options. I have a sandwich, crisps, a pepperami, they don’t last long, I hadn’t realised how hungry I was.

    The mango kefir is an unusual taste, very thick, seems to want to be fizzy but isn’t. The strawberry one is much nicer, just like a drinking yoghurt.

    About 4.30 I try to get some sleep. I can’t as the cough is keeping me awake. It’s bothering me now. I try just lying still but the cough persists.

    Kira heads back to Uni as she has another placement shift in the morning.

    10.30pm I’m the only one downstairs and start to get quite upset. I don’t know what triggers it but the cough is getting me down too. I’m trying to hold it together but failing. Thoughts and emotions start spiralling, I’m spinning out of control. The thoughts scare me as I don’t know where they’ve suddenly come from.

    Rhian comes down from her bath and I break down in the kitchen, sobbing, leaning against the work surface. She comforts me until I gain some control. I’m getting scared, I start doubting if I can do this whole cancer treatment thing.

    I go upstairs, our room is dark and I just sit down on the end of the bed and start to unravel. Before I know it the lights are on and Katies there and I start crying. Big loud sobs like I’ve never experienced before.

    3 weeks of pent up emotion comes flooding out and I can’t stop it. I’ve never felt this sad, useless, scared ever. I say out load “I can’t do this!” Over and over again through sadness and tears I’ve never felt before.

    Rhian also joins our huddle. I don’t know how long it lasts but the 3 of us hug. I wish Kira was here to complete Team Davis.

    11.15pm and we all go to our beds, I lie there for an hour or so before drifting off. I don’t know why but I take a selfie of my red, blotchy tear stained and puffy face. I think I need it to remind myself how low I got.

  • That wasn’t planned!

    The night after the first treatment was very uncomfortable with a lot more chest and side pain than normal. The next day, Friday I spent most of it just lying down and moving as little as possible as this meant less pain.

    I’m on my own all day as everyone else is out and generally feeling quite down with the pain, the morphine is having to be used more and more just to keep it down. The paracetamol and codeine on their own aren’t enough.

    The next morning, Saturday I’m still in so much pain and fighting to control my breathing. Katie insists I call the treatment hotline who in turn want me to come into A&E in case I have some clots. They let A&E know I’m coming in.

    Again I’m seen very quickly but hate that I’m on my own again

    After more blood tests, chest x ray, ct scan they confirm there are no clots but there are small effusions on both lungs, my temperature is slightly high and one of my blood markers (inflammation) is very high.

    They suspect I have an infection on the lungs and want to start IV antibiotics. They also want to admit me. I’m alone in the room in A&E and want to go home, I want to cry but lust about hold it together. Feeling really low now.

    They hook me up to an antibiotic IV of Tazocin and within a couple of minutes of getting it my face feels very blotchy and hot. I’ve had an allergic reaction. Luckily it dies down almost as quickly but it was a horrible sensation.

    Drs agree not to give that to me again and switch to oral antibiotics.

    I’m initially transferred from A&E to the Emergency Assessment Unit. I thought that’s where I was staying for the night but after about an hour I was then transferred to a ward. I got a private side room which was really nice but I felt so lonely and fed up.

    I have my dinner which was surprisingly nice and settle in for the night. As I’m lying there I notice for the first time that the pain as dulled significantly.

    I’m woken up at 6.30am by a nurse with pain killers. I don’t feel rested at all but the pain has dulled further however I notice an old friend has returned as my cough has come back. I’d not had that for a few weeks now.

    An oncology Dr arrives with the same registrar we saw on Tuesday. He confirms an infection but temperature is normal now and asks if I want to go home. Of course I do.

    He tells me I need to consume lots of Kefir, a yoghurt drink with lots of bacteria. Apparently antibiotics and reduce the effectiveness of immunotherapy so this balances it out.

    My lunch arrives and I’m starving hungry. I also don’t know what’s happening or if I’m going home today.

    12.40 a nurse comes in to tell me I’m going home.

    2pm I’m home. Cough is really annoying now but virtually no pain. I feel good. Also hungry.