Is there life outside of hospital appointments?

So another week and another lot of appointments. At present I have 4 in the diary. That may change. 

I’ve finished the antibiotics but my guts have not calmed down. It could be the GvHD is playing up. It could be an infection, or it could be the antibiotics are still causing problems. 

More annoyingly my PEG is still oozing pus and if I press around the area it makes more push drain. I don’t smell too good either. Yuck! Sorry if that’s too much info. 

Last week was busy but productive. I had a good #MDSWorldAwarenessDay. Myself and Claudia Richards and Ally represented MDS UK Patient Support Group and between us spoke to 11 different radio stations. After that I was whisked off to have a chat with a Pharma company who want to get patients more involved in how they develop and grow. I think medics, patients and Pharma companies should all work together as that would always give the best outcome for the patient. Gone are the days where the doctor is God and patients are just passive recipients with no power. Let’s hope something comes of it. 

I’ve been feeling more tired the last couple of weeks and have fallen asleep on the sofa a few times. I’m also pale and breathless. I really hope this isn’t the start of another dip. One of the hardest things about living like this is that it’s similar to how Damocles must’ve felt when he went every where with a sword perched over his head, never knowing when it would drop and strike it’s fateful blow. 

I don’t want to have to be over cautious. I wish I didn’t need to see so many drs. I know I’m going to need to contact my lovely CNS and say about the pus still leaking from my PEG. I guess she will say I need to come in and be seen. I’d really like it not to be the case. I know they are only doing their job. I just get so fed up with the intrusion into my life. 

I’ve got lots I want to do at home. I have loads of sorting out that is calling me. I also have a desire to spend a couple of days in bed watching crap TV. I wonder if I manage to do anything in between the 4 hospital appointments. Oh well let’s see what the week brings. As I always tell people you can’t start a new life but each day is a new day. 

Dealing with admin cock ups!

Today was a very annoying day. 

It started nicely with an unexpected text from my little sis Gail saying she would come to the hospital with me today and keep me company. That was a nice treat. 

We got there in plenty of time to be seen in the Rheumatology Clinic at 11.30am.  The receptionist told me that sadly the clinic had been cancelled and my appointment was now next week. He was sorry that no one had told me. It’s soooo frustrating. Mornings are not easy for me because of all the medication and because I feel most ropey. There was no point shooting the messenger so I just had to accept that I’d had a wasted journey. 

As I thought I had an appointment I had left some meds in pharmacy to pick up, so I did that. I then went to haematology to have my 2 dressings changed. They were not happy about the oozing still coming from the PEG. The HOP doctor wanted another swab. He also wanted to refer to someone more senior. After another hour I was fed up with waiting and said they could ring me if they needed anything. Sometimes I feel like they forget that I might just have a life outside of all these hospital appointments. 

I managed to get out in enough time to pick up my gorgeous niece and partner and with my little sis we all went off to see A Star is Born. It was great to do something ordinary and not medical in any way. It’s a beautifully poignant love story. I believe love conquers all, even cancer, GvHD, hospital appointments and long term

disabilities. I just need to hang in there. 

Light a candle don’t curse the darkness

Hello everyone,

I hope that you have some light and love with you in your daily struggles.

My skin cancers are healing nicely. L

After my raft of appointments last week things continue in the same way this week. Today I saw my lovely eccentric Pain Clinic Consultant. She has prescribed a cream with chilly in it for some of the pain I get on my skin. I’ll give it a go but it sounds a bit weird.

Then I had a blood test. There were 48 patients in front of me. Sigh. I spend so much of my time in various waiting rooms. I cheered myself up while I was waiting by watching a documentary on death row. Lol.

After this I saw my haematologist. I’ve been told to persevere with the antibiotics even though they go straight through me. He wants to repeat my echo cardiogramme as there was an abnormality on the last one. He wants to repeat my lung function test. He wants to check my nerves and if I have an neuropathy. He also wants a fasting cholesterol test as my result is still sky high. He is going to refer me to a specialist post transplant lipid clinic. We talked about if they would ever use the word cured with me. He said let’s see about getting to 5 years. And then we will see after 10 years and if still cancer free then they might consider I’m cured. I’ll keep plodding on.

After seeing him, I had to see the dietician. She’s back in the department after a long gap and remarked how well I was looking. That’s good feedback to have. She is going to get a specialist nurse to contact me about the problems I’m having with the PEG and discharge and what’s normal or not.

Most people would not have that many appointments and interactions with medics in a month yet alone a day. I’m back again tomorrow where I’m seeing the consultant rheumatologist and when he is finished with me I need to have my Hickman Line and PEG Site redressed. Life eh?

People say to me why do I write this blog and work to raise awareness of this rare blood cancer called MDS and the complications following a transplant. The answer can be summed up in this anonymous quote - “If you have knowledge, let others light their candles in it.” I don’t want anyone to be sat in the darkness and if I can give something of myself to bring some reassurance to others then I’m happy to give myself away. After all a candle loses nothing by lighting other candles.

Life is on 10% of what happens to you

Amazing to see all the different colours that blood is. It’s been a strange day in many respects. 

I went to bed around 11pm last night and was still laying there wide awake at 4am. This is the second time that’s happened this week and is highly unusual for me. Even if I have something on my mind I usually sleep. I need around 10 hours most nights. At 2am I picked up my phone and checked the side effects of Clarithromycin on the NHS website. Insomnia is in the top 10. Oh my goodness. Only 2 more days of these tablets to go and hopefully my usual sleeping pattern will return. 

I was up early today because I had 3 separate appointments at Guys. The first was physio at 11am. That went well apart from me being late because my PEG pump was being temperamental. Getting out of the house early is really hard. I don’t feel brilliant at that time of day. Then I have to crush a load of tablets and put them down my PEG. Then I need to find the resolve to swallow the rest of the tablets that can’t be crushed. I have to do all this while feeling extremely nauseous and wobbly as well as being in pain and stiff. 

Any way, I digress. My next appointment was at 12 with the dermatology team that specialise in GvHD and are in charge of the ECP treatment I have fortnightly for 2 consecutive days. I saw a new doctor. He is Italian with a really lovely manner. He has changed my anti-itch medication as my skin has been really itchy again. He also said I probably have neuropathy. That’s the first time anyone has said that. I was asking him why my skin felt bruised if I scratch it and if I cross my legs I get severe pain for about 15 - 30 seconds when I uncross them as the pressure comes off the lower leg.  

Since coming home I’ve looked up neuropathy and it fits like a glove with some of the symptoms I’ve been experiencing. Guess that will need exploring next. In my case it’s a result of the heavy duty chemo I had to endure. 

After this discussion I got the dr to look at a few dodgy looking bits on my skin. He then confirmed all 3 were basal cell carcinomas and he would deal with them there and then. He got the equivalent of a blow torch. It contained some really cold chemicals. He then blasted each BCC. It was very stingy and hurt a bit. As you can see from the pictures the one on my leg has been oozing and stained my tracky bottoms. The reason I get these now is directly linked to having to take immunosuppression and is why I have to be extra careful in the sun now. Sad because there is nothing I like more than lying on a sun lounger listening to fabulous tunes and letting the warmth of the sun soak into me and kiss and heal the sore spots. It’s often been the way I relax most and strangely also been the time when I have many creative thoughts. 

After breathing deeply while he tortured me with his “blow torch”, he then said I would need to continue to have ECP fortnightly and it would be reviewed again in 3 months. By then that will be nearly 18 months of 2 consecutive days every 2 weeks. It’s a huge commitment and a tie to having to stay put. It’s hard to get away. On the other hand I am very fortunate that I live in a country with a free NHS and a great bunch of consultants who enable me to access all this expensive treatment and keep finding new ways to torture and treat me. 

I then went into the admin office and plotted all these appointments which will carry me through to the beginning of Feb 2019. 

After this I went for my ECP. You’ll be pleased to know my Hickman Line is working perfectly. This is the 5th one I’ve had and is the first to work so well. Thank goodness for small mercies. 

The man in the chair next to me is someone I’ve smiled at and said hello to before but today we had a really lovely chat. He is a year ahead of me and had his transplant in 2015. He also has a PEG. We had some really similar experiences. He has had ECP fortnightly for over 2 years. Oh my days, I hope something gives in me soon as I really want to get on with the rest of my life outside of the hospital. 

I managed to get back and take my gorgeous 7 year old granddaughter to her first learn to sing group. She asked me to help her with her singing. My good friend Simon runs this group and had space, so it’s a match made in heaven. She told me she really enjoyed it. It was lovely to have this oasis of normality in a busy and challenging day. She is a little ray of sunshine and I am blessed to have her and her 3 brothers as my wonderful grandchildren. 

I finally got home and slumped on the sofa. In the post that I opened when I got back was the results of my Short Synacthen Test. It confirmed I have severe cortisol deficiency. This means my fight and flight response will not work properly and I will need to be in steroids for life now. Oh well. Nothing I can do about that either. 

So today has been trying. I’ve learned that I have probable neuropathy. I have severe adrenal insufficiency. I need to be ultra vigilant with my skin to keep an eye out for further BCC’s. I will have to dig deep at times to make the heavy regime of hospital appointments work not only for me but  for my poor long suffering partner and family.  I also learnt through speaking with my ECP neighbour that life is hard for so many of us. This man has a small child and one on the way. My daughter was young when I was diagnosed. It is hard to be present fully for your children when you feel so rubbish most of the time. When my daughter was younger I had more better days and I hope she didn’t suffer too much. I feel really sad that I can’t do all I would  like with my grandchildren. My daughter said to me once that it hurt her to see me sit in a chair instead of playing with the kids. She said that she remembers me always being such fun when she was small. She knows I’d want to be like that with my grandchildren. At least the wonderful gift that my lovely sister Gail gave me in the form of her stem cells has brought me precious time. I might not be able to be as playful physically as I would like with the kids but at least I’m still here and in their lives. That’s got to be a good thing. 

I’m back at Kings in the morning and Guys in the afternoon tomorrow. Let’s hope and pray it’s less demanding and eventful than today has been. 

Remember people life is only 10% of what happens to you. The other 90% is how you react to it. You can’t change what life throws at you but you can keep your attitude in check. Good luck with whatever burdens you are carrying too.

Why is pus so gross?

I’ve been a bit quiet since my PEG was inserted. I was surprised by how much it took out of me. The pain did gradually subside each day so that was good. Then one morning I woke up and the area around the tube was painful again. When I had a closer look it was red and angry and then the pus started to appear. Great! 

I’m now on double strength antibiotics and feeling really sick as a result. There in lies the challenge. The medics have to treat me and as an immunocompromised patient it’s vital to get on top of infections. The problem is the antibiotics affect my quality of life. 

Quality of life issues are a huge aspect of daily life for MDS sufferers and those living with extensive chronic GvHD. Medics never seem to ask quality of life questions but to us it’s often the most important aspect of our daily lives. 

I’ve been pleasantly surprised this week. I’ve had conversations with 2 different pharma companies. They are making a huge effort to be patient centric and bring the voice of the patient into their decision making. This is a significant move in the right direction. I do not want to be a passive patient who just receives care and treatment. I am a partner in my care and we all need to work together with the common goal of getting me as well as possible. Let’s hope this is all the start of a patient power revolution. 

Revenge of the PEG

Well it’s been an interesting 24hrs. Needed lots of morphine last night and finally settled around 5am. The pain is a dull roar now and only excruciating when I catch the tube.

This morning I was told the bad news that they wanted to keep me until Thursday. As you can imagine I was not best pleased. The reason is because they couldn’t get someone to come and train me on care of the PEG till thurs morning. The dietician was lovely and very apologetic. She told me that it’s standard practice on haematology for at least a 48hr admission post PEG in case there are any complications. She also said it’s quite invasive and very painful. Surprisingly she said it causes more pain in smaller people.

The next thing a nurse came and told me I could go home after all and that Danika had arranged for someone to come to my house at 9am tomorrow. Despite the early start, this pleased me. The next thing to happen was that Danika came back and said she’d found a nurse to give me some training who would come to me at 4pm today. I’m still waiting but hoping that she shows up soon and I can be in a place of much more comfort. The staff here are lovely but there’s no place like home.

When I was taken into theatre yesterday, I had two lovely anaesthetists. The consultant who saw me last time and another registrar. They tried to cannulate me twice. They are both really experienced women but as they didn’t succeed. This meant they had to use my Hickman Line for the anaesthetic. They don’t like doing it because of the risk of infection and also the speed of uptake of the drugs. I didn’t know anything about it. I didn’t get that nice drifting feeling or anything. One minute I was awake and then nothing till I came round.

Have just had training from a lovely endoscopy nurse. I’ve been told loudly and clearly I have a surgical wound and it is gonna hurt. She loosened the plate slightly as the swelling was making it too tight as you can see.

I’m not allowed to get the wound wet for 2 weeks. After that I can bathe and shower as normal apart from keeping my Hickman out of the water. What they have done is put in the PEG which sits inside my stomach and then inside the PEG tube they have put a Jejunum tube extension which means the feed goes directly into my small bowel. This should mean less nausea and vomiting. Fingers crossed. I also have to have it for at least 3 months but maybe 2 years. Heavens above, I hope not.

So yet another experience to add to my rich array of travelling with cancer and it’s complications. I wonder what’s next on the horizon?