Rebel Rev’s Poem for #MDSWAD

Today is MDS World Awareness Day #MDSWAD. Please do join us in tweeting about MDS and the people who live with it and the families and friends who support those who struggle.

This year we are expressing ourselves through poetry in a bid to raise awareness of MDS and the consequences of treatment. It’s not my forte really but I’m always happy to give these things a go. Here is my contribution :-

Myelo Dysplastic Syndrome the thief that stole my life
Myelo dysplastic syndrome my nemesis and daily strife.
The gift that keeps on giving from sepsis, fatigue and blood
To platelets, GCSF and transplants
I sometimes wonder how I’m stood
I long for a cure one day

Myelo dysplastic syndrome you have my body but not my spirit
I will strive, and wriggle and struggle,
my mind strong as I go through it
My family suffer as do my friends and that I really hate
Seeing the pain and worry on their faces as they wait to hear my fate
I long for a cure one day

Chemo and transplant offer a possible cure for some
You think all is well then GvHD comes along
Now my quality of life is poor and often rotten
I spend weeks and months feeling awful
Not wanting to hit rock bottom
I long for a cure one day

Strangely I can say it’s not always difficult and bad
People rally round and that makes me glad
I’m glad to be alive to see the grandkids grow
And I remind myself I’m still breathing when I feel low
Keep breathing Kes till they find that cure

I know Tina wrote a poem for today. Hopefully she will share it with us too. If any of you are budding poets or lyricists then do give it a go.

I’m sitting in a waiting room at Kings. The others here are waiting for gastric band assessments. They are glancing at me sideways and wondering why I’m in the waiting too. Lol. I’m just waiting for a prescription as I’m here I’m trying to do a few things all in one go. It’s amusing to see the perplexed look on their faces. Lol.

Today hasn’t all run smoothly. I was to see my lovely PEG nurse. It turns out no one way as expecting me. Sabina had emailed to change the appointment but unfortunately the email went to my old account that I can’t access any longer. Once she realised I was waiting for her, she came and saw me any way. That was very nice of her. It just shows how things can be sorted even when a mistake has been made. Between us we came up with a plan of moving forward. I’m so fortunate to have so many excellent staff in my corner.

After I left Sabina I went to get this extra prescription. I can’t get it from the GP because it’s a hospital only medication. Fingers crossed that the new hospital pharmacy system works better and I’m not left sitting around too long.

After this I’m off to see Nick and Jeanette. As well as meeting great medics it’s also true that we meet and become friends with other travellers whether it’s MDS, or GvHD or SCT we all have commonalities and yet are all so different.

So today is cold and dank and not the nicest of days on the outside. What can we all do to change that? My philosophy is whatever the weather, bring your own sunshine.

Please don’t forget to shout out to all those amazing MDS people and their supporters and share the love and light. Xx

Granddaughter suffers too

I didn’t get chance to post yesterday for the last day of #bloodcancerawarenessmonth #makebloodcancervisible. #lifewithcancer and #mds is always interesting. I could go on forever playing with the MDS letters. Today to the ones in the frame I would also add Many Diagnostic Specialists and Many Dedicated Supporters for My Daily Sojourns. Ok I must stop. Lol.

To bring you all up to date. I’ve spent the day at KIngs. My line is playing up and not giving any blood. I’ve called out dinarod and put some drains unblocker down the line. It’s fizzing away for half hour then we will try again.

Then I saw the delightful Victoria (consultant) She has had a good chat with the immunologists. They have suggested some more sophisticated blood tests. One of which is looking at a certain T-Cell that may be causing problems. I have to come back on Friday for these tests. She also wants me to stay on the high dose steroids for longer to see if that reduces the inflammation going on in my system. My counts are not too bad but my kidneys are not happy so some tweaks in medication is needed.

I’ve had a busy few days and I feel exhausted. My aches and pains are increasing as the cells come back in. Victoria doesn’t know what caused them to plummet. Working theories are that it’s either the result of an infection or it could be and autoimmune response. I just have to keep going until they get more answers.

As I write this, I’m sitting in the pharmacy. I’ve been here 30 mins already. They queried the controlled drug prescription because it didn’t specify that it needed to be capsules. Sometimes the rules are interpreted too rigidly. The young man was telling me I had to walk all the way back to haematology. Fortunately a woman intervened and said she’d sort it. The problem is they are dispensing up to number 359 and I’m number 334. It makes you wonder how long it will take to get sorted. I’ve been at Kings since 11.30am. It’s now 5.30pm. I’m meant to be taking my granddaughter to choir practice at 6pm in Plumstead. There’s no way I can do it now. It’s so annoying. This happens really regularly. People don’t realise the impact of all these appointments on the rest of our lives. It’s not just me that suffers but my granddaughter too. I find it so frustrating. Ok rant over. Will have to see what I can do to lessen the impact.

I wish you all Many Delightful Surprises that bring light and happiness to you as you live with your illness of support those who suffer.

The beauty of sunsets

To say things have been a bit of a rollercoaster ride lately is an understatement. It’s been a really intense time.

First off I should explain my #makebloodcancervisible and #bloodcancerawarenessmonth contribution about  #mds and #lifewithcancer. I think when you have stared at the grim reaper and looked deeply into your mortality, it makes you appreciate things that maybe you took for granted before. These days not only do I notice beautiful sunsets but I take a picture to share it with others who may have missed the beauty of nature. There is always something beautiful to look at if you have eyes to see. The pile of pills is my morning dose. I take even more in the evening. Medicine is a necessary evil of living with such ill health. Not only do you have to take stuff to keep you breathing and stop you getting ill or rejecting the transplant, you also have to take other tablets to counteract the side effects of the essential meds. It can be a real challenge if you feel sick to try and swallow all those pills. It’s also hard to find a drink that is ok to mask the flavours with.

For me, lately I’ve had to practice what I preach and sit in the darkness waiting for some answers knowing that the darkness will not overtake me. So what is it that’s so big that even the stoical me was a bit perturbed? As regular readers are aware my counts suddenly bottomed out and my bone marrow was empty. This led the doctors to the opinion that there was a strong chance my transplant had failed and I would need a second transplant. The thought filled me with dread. The transplant saved my life and I will always be grateful to the medics and my little sister for keeping me breathing and giving me a second chance of life. It was a really gruelling process and not one I’d like to repeat. Of course I would go through it again because it would beat the alternative but I would have more trepidation because of knowing what’s to come. So that’s been the case for the last month and I’ve been trying to get my head around it and give those closest to me time to adjust before I went public with the news.

Now to bring you slap bang up to date my counts seem to have returned and things are not looking so sinister. Instead of talk of a second transplant when I saw the consultant this week, it was decided that I would take high dose steroids and start my ECP again. The medics are perplexed about what’s happening and are digging to see if they can find the missing piece of the jigsaw to work out what’s causing my problems.

Wow what a month it’s been. It just shows the importance of not allowing your worry to grow as things can change. Sometimes you just have to sit in the darkness and find yourself held. This is the poem I use as times like that. I share it with you in the hope you find it helpful too.

And You Held Me

and you held me and there were no words
and there was no time and you held me
and there was only wanting and
being held and being filled with wanting
and I was nothing but letting go
and being held
and there were no words and there
needed to be no words
and there was no terror  only stillness
and I was wanting nothing and
it was fullness and it was like aching for God
and it was touch and warmth and
darkness and no time and no words and we flowed
and I flowed and I was not empty
and I was given up to the dark and
in the darkness         I was not lost
and the wanting was like fullness and I could
hardly hold it and I was held and
you were dark and warm and without time and
without words and you held me

Janet Morley

Racism rears it’s ugly head

I continue my saga for those who like to keep up. I arrived at Kings at 8.30am this morning. I saw this sign about unplanned replacements that made me giggle. “Resistance is futile” lol.  While I was in haematology outpatients, affectionately referred to as HOP, I had potassium, magnesium and blood. Ain’t I lucky to have such a rich and varied diet?
It’s now gone 9pm and I’m in the day room of Davidson. I’ve been told the room should be ready by 10pm. They have painted and deep cleaned it today. It’s a shared room which isn’t ideal. I hope I get a nice cell mate. Hopefully tomorrow they can move me to DMU. It’s been such a long day and I’m longing to get into bed.

When me and my long suffering partner arrived this morning we spoke to another couple. They live in Kent. I said I also lived in Kent part time and had worked in Maidstone. They then both told me they didn’t like Maidstone these days and you couldn’t even hear English being spoken in the street. I was incensed at this inappropriate racism. I said that wasn’t my experience at all and then I shut up for fear of getting into a row that would get me no where. I watched this couple receive excellent care from the Asian Doctor, the African Nurse and the Caribbean HCA. I wanted to say to each of the professionals “they don’t think you should be here” of course I kept quiet but it was very tempting to show them up. Brexit has a lot to answer for.

One of the things I’ve noticed these last couple of admissions is that it’s easy for patients to slip through the net regarding meals on the day of admission. If my partner wasn’t around I wouldn’t necessary eat on a day like today. I don’t eat sandwiches and you are not on the ward at meal time. They really should have a procedure in place because some patient would not be assertive. Something I can hopefully suggest that will help and make a difference.

The main reason I’ve been brought back in is because I need this procedure done under general. My consultant doesn’t want to wait for the longer time it would take if I was an outpatient.  It seems daft to me that I could be at home and managing my illness there as I always do but have to be here taking up a bed in order to get the test done more quickly. Madness!

Any way let’s hope it’s sooner rather than later. I shall continue to play with the MDS letters. Today’s Momentous Daily Stories is inspired by the amazing array of tests and tubes and injections and procedures that those of us with MDS have to endure. The images are of me with sepsis in the first and the other shows the Hickman Line threaded through the vein to sit near the top of your heart.

Keep up the good work everyone of #makebloodcancervisible #bloodcancerawrenessmonth #lifewithcancer Keep sharing the knowledge and maybe inspire people to sign up to the registries and transfusion services.Racism

Waiting in hope

Hi Everyone,
I did an update earlier with this image but it doesn’t seem to have posted. If you get it twice apologies.
As you know September is #bloodcancerawarenessmonth. As part of #makebloodcancervisible we have been raising the profile of MDS. I’m doing this by playing with the MDS letters. People are also encouraged to write a poem based on their understanding and knowledge of MDS or a person living with it or a carer working alongside. Fancy giving it a go? Patient Liaison Sophie is collecting poems for our website and newsletter. Why not try your hand at it??
#mylifewithcancer continues to be a struggle. I’ve been let out of hospital for a weekend pass. I have to go back early in the morning.
They need me back in because I have to have a procedure done under general anaesthetic. Once they get the results of this abnormal MRI via a biopsy they will decide on the next steps. So I wait to find out what’s causing all this malabsorption and pain in my gut. I also wait to find out what they are going to do about my empty bone marrow.
I don’t know about you but I find waiting for news is one of the hardest things. Once you know what you’re dealing with you just get on with it.
In the meantime I am enjoying my weekend of freedom. I had a lovely catch up with Mike and Debbie. It was lovely to be able to introduce them to pie n mash. We then wandered around Greenwich and I took them to the Royal Naval Chapel. There I had the nice surprise of bumping into Odette Penwarden who I haven’t seen in ages. Then we saw Pat too. Really lovely to touch base briefly. The final treat of the day was a pint (of coke) overlooking the river at The Trafalgar Tavern. It was a brilliant way to get away from all things hospital related and a real treat.
The treats continued today with entertaining the kids and grandkids. In that respect I am well and truly blessed.
This is also a reminder to you to let or Gail Thompson know if you plan to come on October 19 to our charity fundraiser. Tickets MUST be purchased in advance and are going for a very reasonable £10 for food and entertainment and a free glass of bubbly. Just let one of us know.
In the meantime enjoy the sunshine. Love and hugs Xx

What does Rebel Rev have in common with the film Aliens?

Here’s my latest update for those who like to follow my story.

I’ve now been in hospital for 2 weeks. During this time I have had 2 CT scans, and  2 MRI’s. In the morning I’m having an ultrasound and I’ve also had 2 chest xrays. I am so lucky for living where we do and having this centre of xcellence to treat me as well as a free NHS. Sometimes when I read some of the comments on the American site, I wince at the comments asking what insurance will pay for and where you can go without insurance. One post was so sad, the man was spending his life savings on treatments when it was meant for his recent retirement. Everything he had worked for was going to go. How sad is that? My heart goes out to them all.

I know there is a huge financial burden just from living with the illness. New glasses every year mostly, clothes for your changing shape or to keep you warm in the winter or covered from the sun during the day. Heating is on more often too. I’ve had to buy 3 storage units for my feeds, medical equipment and medication. My car is bigger to accommodate my scooter so that attracts a large down payment. The Motability scheme pay the rest and they are great. It’s just that down payment that’s a struggle. I can adjust though and I have enough. I am not poor by the worlds standards and I count my blessing for that. I’m also not rich these days either.

Getting back to all those tests. When I had my abdo MRI I had to put a beaker full of sticky stuff down my PEG followed by a big jug of water. Half way through the water I knew I was going to be sick. I was in the cubicles outside the mri rooms and totally alone. I could see a bin opposite me but thought that a gross idea. I eventually managed to find a sick bowl having scanned the room. The staff came out and found me puking. They were very good and very attentive from that point of view. The results showed some inflammation and other bits and pieces so they say it needs further investigating as they don’t know what it is just now. Story of my life.

I went back the next day to MRI and this time there was no contrasts or medicines of water jugs. What wasn’t so good was going in head first. When I leave my room I have to wear a mask. I already had a temperature. They then put earplugs in then ear defenders over them. Your head is held fairly securely in a brace and then they put a bracket over your chest and shoulders. I do not suffer from claustrophobia. Even I found it hard going. Once in the machine, your nose is inches from the ceiling! I was in the machine about 40 mins. I started to sweat and had liquid pouring down my back. Not a pleasant experience but hopefully it won’t need repeating as this one came back normal for a change. Lol.

I didn’t make it home as planned before because I spiked a temperature again. I was on regular paracetamol and I still had a 39 plus temp. Luckily they changed the antibiotics and my temps been good since yesterday afternoon.

I’ve had some nice visits from my sisters and Dawn Marsh got some balloons to keep Kim Polito ’s company. It was also lovely to see Shirley Grout who came with some lovely cake sent by Sarah Grout . Thank you Sarah for that and the beautiful card. I loved them both. Then I was lucky to catch up with Alice Dunstall . Thanks for the most interesting up date and also for making a shoulder rub possible. It was good to catch up with Russell and Gill Grant. It’s incredible how many people we have in common. Gill please tell Russ that Janine who he knows through running club works in the same building as Gail and they have a little chat every day. Danielle Peach cheered me up with her tales of motherhood. Today I have seen my cousin Beverley Potter and my little sis Gail Thompson’s . We went for a “walk” in the park and sat and watched children and young people in a trapeze school learning their stuff. It looked like such good fun. I’d have loved to have had a go. Tina Probets came all the way from deepest Kent too with biscuits. I’ve been lucky to have such variety. I know some of you don’t like being tagged so I haven’t named.

The PEG nurse came today too. She said I’ve got over granulation tissue growing rapidly in my stoma. It’s very vascular so will bleed easily. She put a pressure dressing on to stop it coming out more. As it was, I thought it was similar to that seen in aliens where the creature bursts out of the poor blokes stomach. I joked about it with anyone who looked at it. It’s good to keep a sense of humour. Lol.

Yesterday I didn’t even get dressed and only just got out of bed. Normally every day I shower, dress, make my bed and change my quote. I did none of that yesterday. Today had been better but I feel a bit sick and my appetite is poor. Let’s hope I can sneak out again this weekend as that always makes you feel better.

As usual I wish you well with whatever you are carrying and I hope you find some love, light and laughter this weekend.

The changing nature of friendship

When you’re in hospital you have even more time to reflect on life than normally. All sorts of stuff goes through your head. Like I’m forever telling people you mustn’t believe everything you think. That doesn’t mean however, that you shouldn’t think through things, especially difficult things. 

The first time someone queried a problem with my blood was as far back as the late 80’s. I was anaemic at that time and my cells were large. My GP thought I might be drinking too much. I wasn’t and it settled down so was left. It all came back mid 90’s and I was given a ?MDS (Myelo Dysplastic Syndrome) diagnosis around 1998 and a definitive diagnosis from Kings, the centre for excellence for this rare cancer, in 2000. Strangely enough this was the same year that I started a 3 year theological uni course in prep for ordination. I certainly didn’t make things easy for myself. 

 Over the years life has been a challenge to say the least. It took me a long time to accept I had to change my life style to accommodate my more fragile physical being. I was forever pushing boundaries and over doing it. I also never told anyone about the cancer. If people noticed I was pale or looked unwell, I’d just say I had an unusual blood disorder. There were a few close friends that I confide in and of course my family. Initially though I tried to protect everybody. 

As my illness developed, so my lifestyle had to change. Sadly my social life has really suffered. I haven’t been able to go to so many things I’ve been invited to because I haven’t had the energy or because the other person had a cold or bug. Slowly bit by bit your world shrinks. I fight very hard to keep a broad perspective of life and for it not all to become about me and illness. The problem is cancer can be very dominant. 

Over the years I have had sepsis on 11 occasions. Each time there has been a 40% chance of death. Then 3 years ago I ended up in intensive care due to septic shock which carries a 60% chance of death. I really have cheated death on many occasions and beaten the odds. This is bound to change a person. It also has an impact on friends and family. 

Some people just can’t seem to cope with it all so well. Friendships drift and some people fall away. It’s hard. This of course is natural over a lifetime. We have all experienced friendships that wax and wane as we change. When a serious life limiting illness is involved this situation is magnified. It’s like some people can’t cope with seeing the sickness and pain. Others maybe miss the easy ness of the previous relationship and find the complications of hospitals and lengthy admissions too challenging. It starts subtly with less texts and calls. Less invites out. Then people stop commenting or liking posts on Facebook. Before you know it there’s nothing much left. 

The phenomenon of social media doesn’t help help. It gives an illusion of a connection even when it does not exist. People like me who blog and use social media are often misunderstood. People think they know all that’s going on because they’ve read my latest reflection. The problem is that’s only a small part of the whole picture. I still need contact with people and interactions and political debates and to know what’s going on in your lives. Just being in my own head is not enough for me. If you don’t respond to my posts or never comment, how can I feel connected to you. People, I implore you to just use this info to think about your connections with the people around you and how you are relating. If it’s months and months with no comments or contact in any way, is it a real friendship. It ok to admit things have changed and moved on. As much as I love social media it’s no replacement for real contact and face to face interactions. You can’t give a mate a gentle hand squeeze when you see their eyes going misty. You can’t put your arm around a text when you realise what’s not being said behind the smile. Friendships, like long term relationships, take work from time to time and need to be tended. If you value your friendships please invest in them. Don’t let things slide to social media likes as this can never replace the value of true and real friendships. 

Ok enough of my reflections and ramblings about the challenge of maintaining friendships. My health news for those who want to know is that I have some kind of fungal infection in my PEG. Haematologist need to decide what best to do having been given advice from the specialist PEG nurse. I haven’t had results of today’s bloods yet but yesterday I was told my counts are still flat. Last night and you can see it was late from the clock in the picture, I was given a pool of platelets. They call it a pool because it is not just the product of one donor. Platelets are used by the body to clot the blood. Mine have been steadily declining. I started at over 200 and now they are 18. I’m covered in bruises as a result. My neutrophils are still extremely low at 0.02 and my HB is declining again after the last transfusion and is now 80. I continue with the IV antibiotics for another 2 days then hopefully they will stop them. Fingers crossed my temp stays down when they do that. They are keen to do an MRI of my bowel too to check why I get this awful abdo pain at times. 

It’s like I’m in for a full service and MOT. Hope I pass with flying colours. I love the quote from the velvetine rabbit. After all these years of living with cancer my body doesn’t look like me any more. The shape of my face has changed due to the long term steroids. I have loads of scars from all the biopsies and lines and I’m incredible unfit and lacking in tone. However I am still breathing and I’ve learnt so much about life and learned to live deep in my heart. Despite the above reflection I have some great friends and a loving family. I have gained wisdom and insight and so much from being ill too so it’s not all negative. 

The other photos are of my latest bone marrow biopsy site. It’s the back of your hip that they screw into to get the samples. Then there’s the nice juicy platelets. 

I hope wherever you are and whatever you are doing that you have learnt to appreciate the life you have and not yearn for what you don’t. Be blessed people.