Fighting cancer & covid

Hello everyone. I’m so sorry it’s been a while since I’ve put out a vlog/blog. I’ve been feeling crap! Well that’s not quite accurate. I had a couple of days, and I do mean just 2, where I felt the best I had in years and then the walls came tumbling down and I plunged backwards once more. I had a headache from hell. It was like a cactus and as growing out of my head. Then I had to dash to the loo one night and sit down very quickly. While I was “seated” I knew I was also going to throw up. I had a slight temp and I felt dreadful. Normally when I feel bad I just sit or lay very still. That makes things a bit more bearable. This time that strategy didn’t work. I was like death warmed up. I would have happily taken a large dose of sleeping tablets to knock me out till whatever was going on had worked it’s way out of my system. This intense feeling of being that unwell lasted a week. Then I gradually started feeling better but only back to my base level which is not brilliant. There has not been any further sign of those 2 good days. Sigh! It’s like torture. It’s almost like I had a small taste of my old life dangled in front of me, then it was gone. It seem cruel to me but it’s also something to aim for and maybe next time I’ll have 4 days. I just hope and pray one day I might get my old life back for good. One of the things I’ve been thinking about lately is the fuss that some people are making about wearing a mask. Please don’t think that your civil liberties are more important than my life. That’s what is really being said because if I got Covid I would likely die and so would many others like me. The problem is we are invisible amongst you. You can’t tell who the vulnerable people are around you. Please don’t put us at risk. No one would question visiting a baby ward and having to wear a mask. Well those of us with blood cancer or who have had bone marrow transplants have the immune systems of babies. We need to be protected. Please take your collective responsibility and help us carry on living. I hope you like this vlog which is dedicated to Claudia, Dave, Jean, Evie, Nicki and all fighting to stay alive during this tough time. Stay safe and take care Xx https://youtu.be/T_OOB7_7wLg

Puke Fest

It’s been a while since I’ve blogged. Apologies for that. We are all living through such strange times. 

When I last wrote I was an inpatient. I was in that tiny room for nearly 3 weeks. It was so lovely to get home. Often it’s the little things that make a difference. For example being able to pee in peace and not have to do it in a jug and measure it and write it down. In my experience haematology wards are obsessed with all bodily functions not just blood. Lol

I was quite weak and wobbly when I got home but delighted to be there. 

One of the changes the consultant made before I left was to stop my imatinib (chemo tablet) This change stopped the throwing up immediately. I was relieved on one hand because throwing up is not nice, but I was also concerned because I feel the GvHD (graft verses host disease)  was getting worse. 

I had a good first week at home just getting some of my strength back in my legs by walking up and down my hall. It’s very hard to keep your legs moving in those small rooms. These days my legs are so weak and I certainly don’t want them to get any worse. 

I went back to outpatients after a week. I needed to have my IVIG infusion (immunoglobulin therapy) I was intrigued to find out how my electrolytes were doing as they were being replaced virtually daily when I was in. I was amazed to learn they were all in the normal ranges. Oh my days. The consultant says she thinks it was the imatinib. I was well happy about that. I was sent home and told to come back in a month and have telephone or email contact in between if needed. 

Before I left I had a long session with the dietician. Katie wanted me to increase the amount of protein in my diet. Alongside being assured by me that I would increase my intake of protein, Katie also wanted me to try a protein supplement. It came in the form of Jelly or a drink. The jelly was really sweet and unpleasant in its consistency. I knew I needed to keep going with it though and managed the 4 jellies by only having half each time. Then I tried the drinks. These were meant to go in my PEG-J tube so that I didn’t have to taste them. I poured one out only to discover it was very thick and sticky and not something that could go down my PEG. I’ll have to get in touch and explain. I think Katie will be disappointed. 

The other thing Katie wanted me to try was a 12 week probiotic course with a certain product. The liquid could go in the PEG this time as it was water based and wouldn’t clog the tube. It smelt foul. 70 mls was to be taken in the morning on an empty stomach. I did this and then got on with my locked in day of chatting to neighbours and FaceTiming family. That night in bed I started getting really bad reflux which tasted of the medicine. I kept trying to prop myself up. Then I was woken up on 4 separate occasions to sit on the loo. Not very nice when you are really tired and meant to be in bed sleeping. The next morning I started to projectile vomit. It was so violent that it splashed back on me and covered me. I had to call Maggie to help me whereas I would usually deal with these sort of things on my own. I carried on being sick all day. It got to the point that I couldn’t even hold an ice cube down. I felt dreadful. I had a headache and a slight temperature. Poor old Maggie was really worried about me and kept coming up and emptying my sick bowl as in the end I had no strength to get to the loo. 

That night I managed to sleep despite having spent the day asleep in between throwing up. The next morning I felt better although drained by the previous 24hours. I managed to get up but that was about it. I couldn’t even manage to get dressed. 

The next day I started to feel human again. I was able to eat and drink a bit more and get my medication in easier. I still felt rung out and shaky but so much better than before. Maggie did some research on the product I had taken and it seems that some people do react like me. There were of course many people it had really helped but regularly dotted along with all the positive reviews were individuals who had really horrible reactions to it. 

Oh dear! I hate having to go back to Katie and needing to tell her that neither of her bright ideas have worked. She is a great person to work with and really thinks outside the box. I hate having to disappoint her. I’m always willing to try new things or new medications/treatments but sometime the “cure” is worse than the condition. 

Before this horrible reaction I had a telephone consultation with a new member of the haematology team. He is a psychiatrist and he joins a couple of psychotherapists to extend and enhance the care delivered by this much needed aspect of the service. 

I am someone who really believes in counselling and talking through your issues. I think well-being and quality of life issues for long term sufferers of cancer and it’s treatments are vital and I would encourage anyone to engage and accept help if it’s offered. You have to be strong to admit your vulnerabilities. It’s definitely not a sign of weakness. 

In my case what has happened is that someone, maybe who doesn’t know me so well, has wanted a psychological evaluation to see if that is playing a part with my gastric problems. The fact that I never had these problems before the transplant seems to have been lost along the way. I could’ve been defensive in my response but that wouldn’t be right. I was happy to be assessed because I’ve leaned that medics need to tick all the boxes when looking at complex situations where there aren’t any easy answers. 

Greg was a nice bloke and we had a good chat on the phone about all sorts and he concluded something which I’d worked out years ago and that is that I have a very low tolerance for being sick. That I am sensitive and thats how my body reacts. 

I’m pleased we had that conversation and it’s conclusion before I tried the new product for Katie. All of this can actually sometimes make you doubt yourself. It can also lead to feeling judged and not understood. That’s when it’s really good to have an objective opinion form wise people like Greg and Phil to help to get to the roots of what’s going on. 

My problem is where does it leave me? It’s like I’ve reached the limit of being messed around with. The last two medications and this food product have all made me sick. I’ve been on similar medication for many years and not reacted.  Why is my body now deciding to reject these latest treatments? Will I be able to tolerate any other treatments or is this as good as it gets? These are big questions. I wish I had a magic wand and could fix it. Instead I just have to grit my teeth and keep going. I have to focus on all the amazing and wonderful things I have in my life. I count my blessings that I’m still breathing and defying the odds. I’m happy to be part of my grandchildren’s life. 

One of my recent posts had pictures of how hard life has been and how challenging it’s been getting through so many bouts of sepsis and everything  else. The pictures attached to this blog show many of the things I’ve done since being diagnosed. Life doesn’t stop at diagnoses. All of us have to make alterations as we get older. Those of us that develop a serious illness end up doing this earlier and in a more compact way. 

I hope the pictures give you the courage to really live until you die not just exist. I can’t wait for lockdown to be over and for me to be able to get up to some mischief. One of the things I fancy is doing the longest and fastest zip wire ride. You lie in it facing forward, a bit like superman. It’s about a mile long over an old quarry in Wales. 

Whatever it is that you have your sights on, I hope they come your way soon. If not and things are getting tough, don’t be afraid to ask for help. Isolated and shielded doesn’t have to mean disconnected. 

Covid robs Rebel Rev

I’ve been stuck in this small room for two weeks now and I’m definitely going stir crazy. I see no smiles all day because people are all masked up. I can’t have visitors from home and the days just drag. Thank goodness for Netflix

Here’s a vlog giving you a tour around my current living quarters.

https://youtu.be/02WgVn2EY-o

Today is a sad day. It was my uncles funeral and I’m gutted I couldn’t be there to honour him and support my cousin. What makes this so hard is that my lovely aunt died yesterday. She obviously didn’t want to be without him. My heart goes out to my cousin who has lost both her beloved parents within two weeks of each other. I’m so frustrated about not being able to do what I’d like in terms of helping out.

I am also very frustrated by the situation in the hospital. Last week I was told I was having a PICC line put in. At the time I reminded them to mention the stenosis and problems I’d had with having 6 previous hickman lines. The nurse cane and said the porter was on his way. This was 45 mins earlier than expected so I was rushing to finish my daily ablutions and take my meds. Then a nurse came back and said they had just phoned and said they couldn’t do it due to my compromised anatomy. Grrrr. This is just what I predicted.

When Manu the lovely doctor came to see me he said they had now booked me in for the hickman lime for the next day. He said the team would have a discussion as they don’t think that’s the right way to go. It’s a huge problem in some respects. My veins have had it so they do need to get some access to me. Heaven only knows what the solution is.

My phosphate is still needing to be replaced every other day and sometimes daily. They don’t know why I’m not maintaining phosphate so need to try and work out what the problem is. I also seem not to hold on to my calcium just now.

The other weird thing is my BM (blood sugar) gets taken in the morning sometimes. Today it was 2 one day it was only 1 On that occasion the staff made me have some glucose gel. Yet when you do a dip stick urine test it had glucose in it. That normally happens if you have too much globose in your system which is the opposite to the morning problems.

It’s wonderful that our bodies are so complex. It’s hard though when so many bits and pieces are wrong but there is no clear pattern to determine the problems.

It’s really soul destroying to continue to be stuck in hospital when I feel we are not making good progress and getting any answers.

The other issue that’s occurred is that one of my drugs has been misinterpreted. I take mirtazipine. It’s an antidepressant. I take it for it’s side effects, one of which is to create an appetite. Someone from another team has queried this depression and it’s been suggested that I see one of the team of counsellors to check in either the psychologist or psychiatrist. I said I’d do anything that may help but didn’t need psychological support. I did say I wanted a truthful answer to if my current physical state is as good as it gets. If it is, then I will do the work to psychologically adjust. I saw Phil today who is one of the psychologists. I’ve seen him in the past as I’ve come to terms with my diagnosis. He is a great bloke and really good to see if you hit a bump in the road. There was one point where I did feel
depressed and I went to see him. He checked the medications I was on and it turned out to be one of the drugs that was making me feel flat. He spotted it and advised me to change the meds and I was back to normal quite quickly. I trust him and appreciate his insight. Today he confirmed that I was psychologically robust and that wasn’t a problem contributing to my current predicament. If they keep me here much longer that may change. Lol.

I know some of my friends and acquaintances are medics. Would any of you have a clue as to what might be causing me to not hold on to my phosphate and calcium? Any ideas would be gratefully received.

I’d also like some suggestions for a project I could take on. I’m bored and definitely need some stimulation. Any suggestions?

https://youtu.be/02WgVn2EY-o

Thanks for all the kindness and messages. I am with you in spirit even when I feel so far away. Take care and stay safe. Xx

Inpatient frustrations

Hello Everyone,

Here is this weeks blog and vlog. I hope it brings some encouragement to you all.

https://youtu.be/lW5Rsf3PFvw

It seems to me that things are subtly changing. More people are talking about having to learn to live with covid and move our mindset from pandemic to endemic. I’m not sure how we get there but know we will have to move out of social isolation at some point and it will make people really nervous.

The other thing I’ve noticed is that after two months of #lockdown people are beginning to go stir crazy and the cracks are emerging.

My encouragement to you is to not get caught in a rut. If you feel your mood dipping, do something different. Do something weird and whacky. Design an outfit out of bin bags and model it for all to see. Set a quiz amongst your family members. Learn a new song. All these things are distractions but they are also feel good tasks that should bring some light and energy to your days.

I’ve been stuck back in holiday since last tues. I’ve not been in good form for sometime. My muscles are getting weaker and weaker. Yesterday I had some muscle tests. As you can see from the picture the probe went right into the muscle above my knee. Then when the pulse was switched on my foot started to twitch. It was a weird sensation. The two staff members that performed the tests were lovely. I was told at the end that it seems there is a muscle problem rather than a nerve problem. Hopefully I’ll find out this week what it all indicates and what they can do about it.

Since being in I’ve also puked a couple of times. 750mls first time and 600mls next. They were impressed at my substantive up chucks. None can beat last weeks litre. Lol. Because of the increases nausea and vomiting I’ve had a stomach x-ray. While I’m here they also want to remove the PEG J and a polyps and so some biopsies. They also want to do an endoscopy and a muscle MRI. I’ve certainly had my money and then some out of the NHS. It’s an impressive and amazing institution.

The Covid situation makes this stay more challenging. All the staff are wearing masks. This means you can’t lipread and you can’t see smiles. That’s hard! Also no visitors are allowed so it makes the days long and monotonous.

The photos represent different aspects that have happened to me this week. People ask why my personal emoji is purple. The images of the bruises tells you why. Lol. They have tried 7 times to cannulate me today, so far to no avail. They have now sent for an ultrasound and a member of the IV team. I hope they don’t come too late. I need my 3rd 6hr infusions of phosphate since I’ve been in. Phosphate is really hard on the veins and burns and irritates. I also have to have some fluids as my kidney function has gone off a bit.

My philosophy about enduring the storm and climbing above the clouds into the light and warmth of the sun is still very much in evidence. I’m doing my best to keep my spirits up as well as show my love and support to those around me.

I wish you well as you also navigate through these trying times.

I hope you like the vlog too

https://youtu.be/lW5Rsf3PFvw

Stings v Love

We continue to live in strange times. I hope you like the vlog aspect to my general blogging. 

I told the story of the scorpion stinging it’s rescuer because I think life is “stinging” a lot of people just now. We are all struggling with different aspects of #lockdown and #socialisolation. 

My sisters and daughter  are used to being very active and it’s hard to suddenly be stuck at home. Of course on top of their own worries, they worry about me and keeping me safe.  It’s hard for me to be reassuring when the news is constantly reminding us how this disease affects those with pre existing conditions worse as well as those from the BAME community and our fabulous key workers. 

On top of all of this we still have people living with cancer and the consequences of treatment. Many of us have elective appointments for related aspects of our health but they’ve all been put on the back burner so that the NHS can, quite rightly, concentrate on the pandemic. Sadly though the problems that created these elective appointments and procedures still exists. None of us know when things will get moving again. It’s hard for the medics and it’s hard for us being in a void. 

Those of you that read my stuff regularly will know that I had to have the line removed from my chest due to a blood clot. Despite 2 months of daily injections, I still have swelling around the area. I need to take these stinging injections for 3 months and then review. 

I don’t know if it’s the damage caused by the various lines or just to do with the heart but I now have lots of symptoms that indicate all is not well. Your SATS (Oxygen in the blood) should always be 96 or above. Mine goes down to 90 when I try to climb the stairs. I also get lots of swelling in my legs. All this supports the respiratory doctor’s hypothesis that I have mild pulmonary hypotension. 

I’ve managed a week of retaking the chemo drug at a lower dose. I’m pleased it’s worked so far. I feel exhausted all the time and could fall asleep at the drop of a hat. I also feel more nauseous and have pains in my stomach. 

Weirdly I’m also struggling with reflux.  I have to sleep propped up at night to prevent stomach acids ending up in the back of my throat or mouth. 

My mouth is incredibly dry and sometimes I feel like the food is getting stuck as it goes down. I have to chew and chew and chew because of not having enough saliva to break it down. 

My eyes are also very dry despite all the gels, ointments and drops. By the end of the day when all I want to do is flop in bed and watch crap TV my eyes can become really blurry. They burn like when you are coming down with a cold and feel scratchy like I remember the feeling from when I got conjunctivitis as a kid. 

The other weird thing about my vision is that I seem to be seeing wavy lines whereas I know in reality they are straight. The keyboard being a good example. I presume this is a side effect of one of the tablets. Does anyone else have this symptom? 

On a good note, for the first time in a couple of years, I’m not having to run to the loo so frequently. It was anything between 5-20 times a day. Now it’s up to 4 max. So much better. 

My PEG site is quite bloody most mornings and hurts when I first get up. I have to clean it several times a day and change my PJs and sheets more regularly than I would like to. 

My muscles and joints are awful just now. I often sit staring out of the window as I try to breathe over the pains n my hips and shoulders. My ankles and knees are very stiff and tight too. 

My skin is driving me to distraction. I’m itchy all the time. I can often be seen scratching my scalp or rubbing my back against the back of the sofa. I’ve never had dandruff but have it all over my body now as well as in my scalp. Can any one give me a tip for moisturising you’re scalp?

Final change that I’ve noticed is that my nails are awful and full of ridges both vertically and horizontally. They are also very brittle 

I write all these things down to encourage others in their journey’s. Also to demystify what goes on for patients with serious health conditions. I also attach it to the scorpion story. Many of us get stung by life. For those with medical challenges we all have procedures that we’d rather not have done. For example cameras put where the sun don’t shine or bone marrow biopsies. It’s down to us how we react to all of that. Will we let the stings take control or will we keep our temperament which is to give and receive love. 

I want to live in a world with more love and less stings. If the stings don’t lessen up, I will need to increase the flow of love and laughter. I know there is an unending supply. We just need to keep topping our supplies up and sharing it around. Make sure you hand some love away. It might not mean much to you but it could mean the world to the person who receives it. 

Wishing you all love and light and safe virtual hugs. 

Clexane & PEG blues

Hi Everyone

Here is my latest vlog. It gives a unique insight into living with the long term effects of cancer and it’s treatments. I hope you find it interesting. It’s split in two little clips as I have yet to develop my editing skills for this new experience to me.

https://www.facebook.com/1400712590226152/posts/2347744458856289/

The big red chair

Here is something different from me. I hope you enjoy the fun amd laughter. I also hope you rise to the challenge and tell your own story.

https://youtu.be/yi_p30mBjoM