Audio Diary Special Sister

 https://www.bbc.co.uk/sounds/play/p0jz5654?partner=uk.co.bbc&origin=share-mobile

Hi everyone. Something different from me this week. If you can access BBC Sounds do check out this Sunday Morning Breakfast show. I’ve done an audio diary for 8 years with BBC Kent. This time last year that changed to be broadcast out to Sussex and Surrey too. This unique episode explains why despite everything I have been through, this is one of the hardest years of my life. The show runs from 6-10am. Please do listen as it has some great segments and a lovely presenter and producer. My slots airs around 7.40am if you want to tune in live in future. If you can use this link and just want to tune in to my slot the move the cursor on 1.40 and I’ll be around there abouts. 

 

Happy 8th Rebirthday

Today is my 8th rebirthday. These last 8 years since the transplant have been very interesting. There have been some mega ups and downs. 

None of this would have been possible without the precious gift of life that my very amazing and special sister Gail gave me. 

I may have a crap body but my 6 pack spirit carries me through mostly. Gail the fact that I’m still breathing today is down to you. Words could never express my gratitude. 

You and Maggie were absolute stars trekking up to the hospital every day and getting me through it all. I couldn’t have done it without you both. Most people look at me and see a strong woman. I look at both you and Maggie and know why I’m so strong. Love you both lots. It was nice to spend the day with you both and raise a glass to us too. Xx

#stemcelltransplant #myelodysplasticsyndrome #cancersurvivor #anthonynolan #dkms #NHSBT

Blood Cancer Awareness Month 2024 (3)

This is my 3rd blog in the mini series for #bloodcancerawarenessmonth #thisisbloodcancer. The images are me on a sand board in Brazil and me being discharged after the transplant. Then a few others to illustrate what I’m saying.

I’ve been back a week from my lovely trip to Ireland. During that time I’ve seen the ophthalmologist, haematologist, endocrinologist, ENT, audiologist and had a mammogram. I think they’ve all missed me. Lol. 

My covid is still hanging about. I have a cough on top of the cough left from last years infections. I’ve had a few choking sessions too. I wonder why covid makes you choke? My sats are a little low. My watch alerted me and as that’s not medical grade I checked on my proper machine. It’s only a bit low and comes up again when I’ve stopped coughing. 

Infections are one of the symptoms of blood cancer. If you have recurrent infections it’s always worth having a blood test to see if your white cell count is normal. White cells fight infection so if they are low you pick things up easily. Once you are diagnosed with blood cancer it’s important you invest in a good thermometer. I know that if I have a temperature over 37.8 I need support from the haematology team urgently. 

I’ve had a challenging week in terms of social media encounters. A Facebook “friend” sent me a message privately but asked me to share it. This is the content of that message: “ Now you've stopped the winter fuel payments for pensioners and free tv licences for the over 75's there is no reason why you can't stop all the handouts for the boat people.”

This was my reply: “ Please don’t send things like this to me. People that arrive in boats are treated terribly. They are human beings who risk their lives for something better. They have no voice. Pensioners have a loud voice when it comes to lobbying parliament. There is no comparison and I find it upsetting.”

I don’t understand why people always go for the most marginalised. Who we should be going for are the rich who need to do their bit as well as the pensioners. We are directly affected by this withdrawal of £200 winter fuel allowance. We don’t mind tightening our belts if all share in this policy. So many people made fortunes on the back of the PPE scandals. They should feel the pain too. I know Maggie and I will be ok and some pensioners will not. That’s not good and it’s being introduced with too blunt cutoffs. It needs to be available still to those who will really suffer but yet can’t get pension credits. The line is too harsh, but people please don’t turn on each other. They say we are all in the same boat but we are not. We are all in the same storm. Some peoples boats are ocean liners, while others are in flimsy dinghies. Do think before posting these horrible messages. Imagine what it was like for the pregnant woman and 5 children who died last week. My heart goes out to them and all who safely make it but live in awful conditions while we take years to sort their status. If that was your partner or children fleeing to get a better life how would you feel seeing them all die. Don’t lose your humanity because that’s a very dangerous road to go down. 

Ok enough of my rant. Something funny before I leave you. When I saw the ophthalmologist we had a long talk about the state of my left eye. He was asking loads of questions from my childhood that I couldn’t answer with certainty. However when it came to my 2nd squint correction when I was 17 I had all the details. He asked me how come I know so much about that. I said I’d already left home and it was down to me from that point to sort my health out. He said that was young to leave home and I told him that the nurses on the ward were astounded that I’d already left home and thought I looked about 12. He then quipped “you only look 40 now” Lol. As I’m 60 in a few months time I’ll take that. 😜

Blood cancer awareness month 2024 (1)

September is #BloodCancerAwarenessMonth. 

I was diagnosed with the rare blood cancer myelo dysplastic syndrome definitively in 2000 although there had been a possible MDS diagnosis for a few years before. 

I thought for this special month I would share some photos that I call #thisisbloodcancer They were all taken during the time I was living with the disease. I will also share some facts and figures. I hope you find this series interesting.

#bloodcancer 

Blood cancer awareness month 2024 (2))

Hi Folks,

Here’s the next post in my series for #BloodCancerAwarenessMonth. The photos are historic. Please don’t think they are current. I’m at home and recovering from covid but otherwise all good. I’m posting photos of when I’ve been ill with my blood cancer but also of some of the adventurous things I’ve done too. I’ve never wanted to be totally defined by my cancer and the effects of treatment. There is much more to me than that. 

Here are some statistics about blood cancer in the UK: 

“Diagnosis: Over 41,000 people are diagnosed with blood cancer each year. 

Survival: The five-year survival rate for blood cancer is around 70%. 

Incidence: One in every 16 men and one in every 22 women will develop blood cancer at some point in their lives. 

Prevalence: There are about 250,000 people living with blood cancer in the UK. 

Mortality: About 16,000 people die of blood cancer each year. 

Cause: Blood cancer is the third biggest cancer killer in the UK. 

Types: Different types of blood cancer include leukaemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), and myeloproliferative neoplasms (MPN). 

Gender: Blood cancers are slightly more common in men than women. 

Age: The risk of blood cancer increases as you get older. 

Survival rates differ for each type of blood cancer, but many people who have blood cancer can expect to survive as long as most other people.”

The pictures are of me scuba diving in Cyprus and the other is one of the many Hickman Lines I had inserted during my treatment. 

#thisisbloodcancer #bloodcancer

 

Don’t call CSI

Hello folks,

I woke up to the scene of a mini massacre yesterday morning. Lol. Since I had the stroke in 2021 I’ve had to take blood thinners. Also my skin is very frail from all the steroids. I somehow banged my elbow in the night and slightly skinned it. It didn’t wake me up but it did make me bleed. I managed to get the sheet, the mattress topper, the duvet and duvet cover, pillow and pillowcase. I couldn’t have done better if I tried in making sure I spread it over every bit of bed linen. Lol. 

I must’ve been somewhat aware because I was a bit restless for me and kept putting the radio back on every hour till about 3am. 

I’m having a lovely time in Ireland but it’s made me really aware of how challenging it is to live in an able bodied world when you are differently abled. I’m in rural Kerry which is quite remote. There is a road/track down to the village that’s about a kilometre away. You need to be a brave soul to cope with the camber of the road on the mobility scooter. I was sure I’d end up in the ditch. It’s also VERY bumpy. Then in the nearest towns there are fewer places to be able to cross the road as far less dropped kerbs. There are a lot less differently abled people around it seems so when I’m out and about the kids really stare. I don’t mind and I just wave at them. If I’m not wearing the mask I give them a big smile too. Most times they smile and wave back.

After waking up to the massacre yesterday I was hoping for a better night last night  I’d had a bit of a bad day with nausea and lack of appetite so was looking forward to a good nights sleep  my body decided otherwise  I started to cough and it kept waking me up  I also had a scratchy throat. Even in my drowsy state I knew that wasn’t a good sign. This morning I have a very deep gravelly voice, a sore throat and a cough and a horrible headache. Have you guessed what’s coming? I have bloody covid again. Oh my days what is it with my trips to Ireland and getting covid. I got it here for the first time last year and it caused me problems from July through to March. I still have remnants of the impact of the set of infections that were set up by the original covid infection. 

My timing is always good. It seems most of the team that know me back in London are on A/L. This is very important as they all work so hard but the timing sucks. Lol  I need someone from Kings to contact Cork haematology to arrange the medication I need. Why do these things always happen on a Friday? Let’s hope it gets sorted. 

Despite all this it’s done my soul good to be in these mountains and such beautiful surroundings. I send you back some Irish friendliness and a dollop of love and hugs.

I’m now bionic!

Hello lovely people out in the virtual world. I hope this blog finds you in an ok place. If you are doing it tough just now, I hope this blog gives you comfort and strength. 

My set of miracles has continued unexpectedly for me lately. I’m still in shock about it all in many respects. As those who read my blogs know two weeks ago I had a cataract operation. For the first time in my life I’m not wearing glasses except to read. It still seems so weird. I’m slowly adjusting and getting better at remembering to take my reading glasses with me. 

Well if that wasn’t good enough news I then had an appointment with the lovely April who is a dentist at Guys. She’s been doing some work for me over this last year. I’ve had to wear a denture for 4 years now. I snapped my front tooth munching into a raw brussel sprout. I had previously snapped another one eating a chocolate matchstick. I have all the luck. Many of my teeth have cracked and come out and I suspect a few more will go before it’s all finished. I’ve hated the denture with a passion since I’ve had it. Guys were really good and made another bespoke one with metal plate that would be better for seaming the temperature of food. The problem is I hate having things in my mouth. I’ve suffered from chronic nausea for many years now and the denture just added to my struggles. Also food would get trapped underneath and when I took the denture out this debris would turn into gags ville for me. My very dry mouth at times was the icing on the cake as to why it was so hard to wear these well made teeth. 

I really wanted implants to sort me out as they are permanent and transforming. Unfortunately with my osteoporosis/osteopenia and lack of immune system this is just not an option. Instead the fantastic team at Guys decided they could put a tooth in the front gap with a wing back bridge to the next tooth. This keeps the integrity of the good tooth and means nothing bulky in my mouth. 

I was a bit nervous on the day as I’m not keen on dentists but also because I was worried it wouldn’t work. I need not have worried. April did a grand job as you can see from the photo. I feel like I’ve been given my smile back. Before I had this done, when I was at home, I’d take the denture out because I hated it so much. This meant I didn’t smile if someone unexpectedly came to the door. I was always putting my hand over my mouth. I’m so grateful to the team at Guys who have looked after me so well over many years. I hope you know how appreciated you are. 

My final miracle is that despite being in close proximity to someone who had Covid, I didn’t pick the virus up. I’m still in shock about this. I’m as cautious as I can be but sometimes despite that, you come into contact with things. This happened a few days before we were due to sail to Ireland for 3 weeks. What is it about me and Ireland and Covid? Despite being exhausted from the journey and needing two days to recover, I have still not come down with anything. Wow! Ain’t that amazing? 

Life is so full of ups and downs for those of us that live differently abled lives and who carry the burden of the effects of cancer treatments. I’m glad to be able to share with you these modern day miracles. I hope it encourages you all to keep plodding on till you meet some of these angels in the form of medics. 

I leave you with some photos of the beautiful scenery around me from the lovely mountains of Kerry.