9th Rebirthday

 Today is my 9th rebirthday. Wow! Double figures next year! I am amazed to have got this far. It wouldn’t have happened without the support of my wonderful sister Gail and her gift of life to me in the form of stem cells. 

During the month that I was in hospital, Gail and Maggie came every day. They made such a difference to me and what was great is they were able to support each other. It was an intense time for us all and the love we all have for one another was deepened. 

These 9yrs have not been easy. In fact I’m more disabled now than I was before the transplant but at least I’m still here. I know there will be more struggles to come but with the continued love and support of my family and friends, I know I’ll get through it until my time comes. Thank you to all who have been part of my journey. Either the 16 years with MDS or the 9 years with post transplant complications. Thank you to my amazing medical teams mainly at Kings but also at Guys. 

The sad thing is over these last 25 years I’ve had to say goodbye to many. This has been either through dying from the blood cancer or because friends and acquaintances just couldn’t cope with my level of suffering and ill health and have slowly withdrawn. 

You need to dig deep when you experience a cancer diagnosis. The ramifications on physical and mental health are severe but it’s not just the illness and the treatment, it’s also the changes. Changes to friendship groups, changes to physical ability, changes that lead to a minimal social life, changes to the way and how long you can holiday for. These are just some of the difficulties. 

Cancer also has some positives. It brings you much closer to the people that love and care for you. It stops you sweating the small stuff. It gives you an opportunity to give back like I do with cr_uk and MDS UK Patient Support Group and kingscollegehospital. I may not be able to sing like I used to which would always make my soul smile but I have learned to live deep in my soul and for that I’m grateful. 

“Life is only 10% of what happens to you. The other 90% is how you respond to it” #mds #bloodcancer #Cancer #cancerawareness #SurvivorStrength

Remembering October

 

October is one of those challenging and uplifting months all at the same time. The reason is I have loads of significant dates in the month attached to important people in my life or important events. 

3 Oct is the anniversary of my lovely chosen mums death. She was sos special and there are times I long to talk to her. If I still myself I can still hear her voice. 

9 Oct is my eldest grandchild’s birthday. He is 22 now and making his way in the world. He is a lovely soul and I’m so proud of him. 

9 Oct is also the anniversary of my priesting.  I was ordained priest in the morning and went to Alfie’s 1st birthday party in the afternoon. So that makes me 21 years a priest. 

11 Oct is mine and Maggie’s anniversary. 34 years this year. She is the love of my life and my rock. I don’t know where I’d be without her. 

11 Oct is also the day I had my first bag of chemo 9 years ago. 

12 Oct is the anniversary of the death of the forever young Vicky. This feisty imp died when she was only 20. She was a tiny dot due to her cystic fibrosis but she left a huge impact on all who knew and loved her. Her birthday was so important to her. She made such a fuss about it so I never forget it. She would have been 37 today. 

21 Oct is my 9th rebirthday. It’s the day I got my sister’s stem cells and my life was saved. It was also changed forever. 

25 Oct is World MDS Awareness Day. MDS was my rare blood cancer. I was formally diagnosed in 2000 though I had weird blood tests going back to the 80s. 

So you can see that October is an emotionally laden month for me. 

I haven’t blogged for a year because I’ve been going through stuff. I think it’s about time I got going again. Expect more from me in the future. 

Love and hugs folks 

Rebel Rev AKA Kes

I’ll be back soon

Sorry I haven’t been posting for a while. I’ve been a bit like a water bug in a cocoon. As soon as my dragonfly wings appear I will start to fly again and will come back to this forum. Please bear with me.

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