The last few months have been hard. As a reflective practitioner, I’ve been thinking about how long I’ve felt below par. I realised how I’ve never really picked up since my 5 week admission over the summer.
Since returning from Ireland, after I got out of the ward, I have virtually had weekly appointments. Sometimes I’ve been at the hospital 4&5 times in a week. I seem to have an inability to maintain my electrolytes. Also my HB (haemaglobin) keeps dropping to the point where I need a blood transfusion. This cycle has continued since August and I’m tired now.
This last week was typical of how things have been. Monday I had a review in haematology. My HB counts had come up to 96 so I didn’t need a transfusion and the electrolytes were only a little low. I got to the hospital at midday and was home by 4.30pm. Tuesday I managed to go Christmas shopping. I felt cold and breathless and a bit faint. At least I got the things I needed to. Weds I had ECP at the cancer centre. I felt really yuck during the treatment and ended up falling asleep. I got to London Bridge at 1.45pm and was home for 5pm. The next day was a rare treat and I caught up with my lovely friends Alison and Cara. I was very slow and cold and breathless but shrugged it off. That night at 6.30pm I had a call from ECP to say my HB was only 85 and they couldn’t give the next days treatment unless I had an urgent blood transfusion.
I emailed Kings and explained what was needed and that I was coming to Kings for a midday appointment for an echo cardio gramme. They rang in the morning and asked me to get in earlier. I arrived at 10.30am. They took blood around 11.30am. I went off and had my scan and came back to Haematology. They told me my HB was now 83. I went and waited outside till they had some blood for me. They called me back in around 3pm. It takes 2 hours for a transfusion of blood. I was meant to be at Guys for 4.30pm for day 2 of ECP. I rang and they said as I’d be so late would I come the next morning instead. So Sat morning when I’m meant to be doing Christmas things I go back to the cancer centre to complete this weeks treatment cycle. I got home around 6pm on Friday and Saturday I was at the hospital from 10am till 2.30pm.
I list the hours in this post just so you can see how many hours I spend sitting around waiting rooms and how I have to constantly juggle competing demands and numerous appointments. Next week is Christmas week. I have an appointment Christmas Eve in the lipids clinic to see why my liver is causing cholesterol issues. I’m then back on 27 with pain clinic in the morning and late effects clinic in the afternoon. It’s just relentless.
It helps keep me sane that I have such a good family around me. I’m also glad that occasionally I break out and do something completely different.
As this years draws to a close I’d like to say a huge thank you to all my friends who have been there for me. The ones who know when to send a text or message, the ones who call in with cake and biscuits. The ones that invite me out to do fun things or get up to mischief. I need more of this in my life next year to balance all the rest of it. I hope this post encourages you to keep being the great people that you are.
To all those travelling the MDS journey with me, hang on in there as best you can. Let’s hope for new treatments and one day a cure. We are a rare band and it’s great the way we stick together and support each other. Know that I am thinking of you and holding you in the light and love of Christmas.
To my family, I am so blessed to have such a diverse family which is growing all the time. I love you all from the bottom of my heart and appreciate all you do to keep me as happy and healthy as can be. In that respect I am really blessed.
To myself. Keep going Kes some of the best days of your life haven’t happened y
Monday 24 December 2018
Saturday 8 December 2018
Rebel Rev is running out of steam
I’ve had an interesting a exhausting week. An altruistic stranger saved my life on Monday in the form of a blood transfusion. Usually that perks people, including me, right up but I didn’t feel any better for my “pint” of the red stuff!
Weds and Thurs I had ECP. I received this lovely Christmas card from the staff. It’s all the more poignant because 2 members of staff have just left. Monica and Ali will be really missed. Those of you that read my blogs regularly will know that relationships with staff in this context is different. I have ECP every 2 weeks for 2 consecutive days and have done for the last 15 months. I’m in the department for anything between 2.5hrs and 4hrs each day. That means you get to know the nurses well. You know what’s going on their lives. You look at their wedding photos and chat about their children and the issues that are important to them. In the same way you talk about yourself and what’s going on for you, not just the medical staff. When someone you’ve developed a good relationship with moves on, it’s like a mini bereavement. I wish them nothing but the best and I hope they know the difference they make to me and the lives of all the patients they serve.
On my way home, a huge wave of tiredness came over me. Despite the weather I had to open the windows and put some music on. Day 2 often leaves me wiped out.
There’s no rest for the wicked though. I am involved in a campaign called John Roan Resists - No to Academies. My grandchildren go to the local comprehensive school. It’s being forced to become an academy. The sponsor that has been allocated is the UST Academy chain. We have uncovered lots of reasons as to why no one should be in business with these people, yet alone trust them with the previous hound minds of our loved ones. I was asked to give a speech as a parent/grandparent representative. I’m always happy to do this sort of thing. Speaking in public comes easy to me. I also like doing things that are not hospital related. I’ve met a great bunch of committed and principled staff who are prepared to put their jobs on the line and a diverse group of parents too. What unites us all is that our children are not commodities to be bought and sold and their education is too important to leave to those who do not justify their fat cat salaries. Do check out our Facebook page and like our campaign if you agree.
Today I had to go back to haematology to check my blood and electrolyte levels. It seems my HB (haemaglobin) has only come up to 93 with the transfusion. Also I had to have another magnesium infusion. I hate having magnesium. It makes you feel so hot and sick. My calcium was also a bit low but they said I could leave that a bit longer. They want me back tues to check the levels again as I may need more blood as well as the replacement electrolytes.
I dozed off in the chair at one point and became aware that someone was holding my hand. I opened my eyes to see Prof Mufti smiling at me. He asked how I was and gave me a hug. He is such a lovely man. How lucky am I to have this eminent doctor in my corner?
So 4 appointments this week. 5 appointments last week. Let’s hope things calm down. I’m itching to get my Christmas decs up. I just want to do some ordinary things. I also love creating a beautiful effect with lights.
Tomorrow I’m off to the theatre. It’s the last birthday treat for my long suffering partner. My sisters and their husbands are coming too. It’s going to be such a lovely surprise. Guess the Christmas decs will have to wait.
To finish off with, here’s a quote to inspire you to keep going and to be the change you want to see in the world.
“People who are crazy enough to think they can change the world, are the ones who do.” – Rob Siltanen
Weds and Thurs I had ECP. I received this lovely Christmas card from the staff. It’s all the more poignant because 2 members of staff have just left. Monica and Ali will be really missed. Those of you that read my blogs regularly will know that relationships with staff in this context is different. I have ECP every 2 weeks for 2 consecutive days and have done for the last 15 months. I’m in the department for anything between 2.5hrs and 4hrs each day. That means you get to know the nurses well. You know what’s going on their lives. You look at their wedding photos and chat about their children and the issues that are important to them. In the same way you talk about yourself and what’s going on for you, not just the medical staff. When someone you’ve developed a good relationship with moves on, it’s like a mini bereavement. I wish them nothing but the best and I hope they know the difference they make to me and the lives of all the patients they serve.
On my way home, a huge wave of tiredness came over me. Despite the weather I had to open the windows and put some music on. Day 2 often leaves me wiped out.
There’s no rest for the wicked though. I am involved in a campaign called John Roan Resists - No to Academies. My grandchildren go to the local comprehensive school. It’s being forced to become an academy. The sponsor that has been allocated is the UST Academy chain. We have uncovered lots of reasons as to why no one should be in business with these people, yet alone trust them with the previous hound minds of our loved ones. I was asked to give a speech as a parent/grandparent representative. I’m always happy to do this sort of thing. Speaking in public comes easy to me. I also like doing things that are not hospital related. I’ve met a great bunch of committed and principled staff who are prepared to put their jobs on the line and a diverse group of parents too. What unites us all is that our children are not commodities to be bought and sold and their education is too important to leave to those who do not justify their fat cat salaries. Do check out our Facebook page and like our campaign if you agree.
Today I had to go back to haematology to check my blood and electrolyte levels. It seems my HB (haemaglobin) has only come up to 93 with the transfusion. Also I had to have another magnesium infusion. I hate having magnesium. It makes you feel so hot and sick. My calcium was also a bit low but they said I could leave that a bit longer. They want me back tues to check the levels again as I may need more blood as well as the replacement electrolytes.
I dozed off in the chair at one point and became aware that someone was holding my hand. I opened my eyes to see Prof Mufti smiling at me. He asked how I was and gave me a hug. He is such a lovely man. How lucky am I to have this eminent doctor in my corner?
So 4 appointments this week. 5 appointments last week. Let’s hope things calm down. I’m itching to get my Christmas decs up. I just want to do some ordinary things. I also love creating a beautiful effect with lights.
Tomorrow I’m off to the theatre. It’s the last birthday treat for my long suffering partner. My sisters and their husbands are coming too. It’s going to be such a lovely surprise. Guess the Christmas decs will have to wait.
To finish off with, here’s a quote to inspire you to keep going and to be the change you want to see in the world.
“People who are crazy enough to think they can change the world, are the ones who do.” – Rob Siltanen
Saturday 1 December 2018
An irritating situation
Today was a bit of a challenge. The morning started well and I was able to do a bit of housework before heading to Kings. This was for my 5 hospital appointment of the week. I had to be in the Cardiac Unit for 1.30pm according to my letter for an echo of my heart. As it was the weekend and not rush hour, I gave myself an hour. Sadly I had underestimated the madness of the time of year and all the Christmas shoppers. The roads were a nightmare.
I tried to ring to explain I was coming but running slightly late. As it was a Saturday I couldn’t get through.
I got in to the department at 1.40pm. A rather perplexed woman asked me what I had come for. She then said to take a seat and she would get someone. Then a man came back that I had passed in the corridor. He explained he was the admin worker and that unfortunately as I was late, my appointment had been cancelled. I said I had just driven over an hour and was there no way I could be seen. He said that the technician had gone home. I was so irritated. Not with the man that came back and explained things but at the situation. The helpful man said he would leave a note for Monday’s admin to set up a new appointment as he couldn’t follow up, as he only worked weekends. I said the new appointment would have to be made when I had an existing appointment as I was not going to make another special trip as I already have so many trips to the hospital as it is. I did manage to thank the guy for his helpfulness despite my frustration.
On the way home I found myself getting irritated all over again. I decided to put the radio on loud and sing along. The Christmas songs were coming thick and fast. Singing along helped lift my mood. I guess it’s like that quote says “life is a grindstone. Whether it grinds you down or polishes you up is up to you”
It’s all well and good having these extra appointments. The government wants a 24:7 NHS, which it is for emergencies but the infrastructure is not there for these clinics on a Saturday. A phone is a pretty basic requirement to run a clinic. I might just have to give them a bit a feedback. As you know I always big up the NHS and know I wouldn’t be here without the skill and dedication of so many. On this occasion though I think they could’ve done better.
Had a lovely evening celebrating my wonderful and long suffering partners birthday. We went to the cinema and saw a great film called Disobedience. Tomorrow we have a family meal out and no doubt more fun and laughter. At least the day ended well. Balance in all things is important.
Hope you’re all having the best weekend you can and if it’s a struggle, know that I am holding you in the light.
I tried to ring to explain I was coming but running slightly late. As it was a Saturday I couldn’t get through.
I got in to the department at 1.40pm. A rather perplexed woman asked me what I had come for. She then said to take a seat and she would get someone. Then a man came back that I had passed in the corridor. He explained he was the admin worker and that unfortunately as I was late, my appointment had been cancelled. I said I had just driven over an hour and was there no way I could be seen. He said that the technician had gone home. I was so irritated. Not with the man that came back and explained things but at the situation. The helpful man said he would leave a note for Monday’s admin to set up a new appointment as he couldn’t follow up, as he only worked weekends. I said the new appointment would have to be made when I had an existing appointment as I was not going to make another special trip as I already have so many trips to the hospital as it is. I did manage to thank the guy for his helpfulness despite my frustration.
On the way home I found myself getting irritated all over again. I decided to put the radio on loud and sing along. The Christmas songs were coming thick and fast. Singing along helped lift my mood. I guess it’s like that quote says “life is a grindstone. Whether it grinds you down or polishes you up is up to you”
It’s all well and good having these extra appointments. The government wants a 24:7 NHS, which it is for emergencies but the infrastructure is not there for these clinics on a Saturday. A phone is a pretty basic requirement to run a clinic. I might just have to give them a bit a feedback. As you know I always big up the NHS and know I wouldn’t be here without the skill and dedication of so many. On this occasion though I think they could’ve done better.
Had a lovely evening celebrating my wonderful and long suffering partners birthday. We went to the cinema and saw a great film called Disobedience. Tomorrow we have a family meal out and no doubt more fun and laughter. At least the day ended well. Balance in all things is important.
Hope you’re all having the best weekend you can and if it’s a struggle, know that I am holding you in the light.
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