Friday 27 September 2019

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


Tuesday 10 September 2019

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

Sunday 8 September 2019

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