Christmas fun and challenges

Dear All,

I am so sorry that I haven’t sent cards this year. I had flu, then an unexpected hospital admission and I’m still feeling a  bit grim. I finished my course of Tamiflu and the double strength antibiotics today. I’m hoping that means my washing machine stomach will stop churning and I don’t need to be so close to the loo by tomorrow. I can live in hope!

As you can see the bruises are coming thick and fast. The large dose of anticlot that I inject every day is doing its job. It’s a horrible injection. It really stings sometimes for as long as a minute after. I’m hoping to not have to take it long term. Will see what happens when they do the venogramme to see what damage the line has done and also where and how big is the clot.

I was at Kings today. My lovely new consultant, Camilla was incredibly thorough and I was in her consulting room for an hour. Despite the long appointment, Camilla still rang me tonight about a couple of points she forgot to say.

Camilla was pleased with my progress and all my bloods have gone up.

The other bits of news to bring you up to date with  is my immunoglobulin is very low. This affects your ability to fight infection. The lovely new consultant haematologist has referred me to an immunologist to see the best way forward. It’s normally given as an IV infusion but my veins are so bad that might need to do it under the skin which is more complicated. Today it took them 4 attempts and 3 phlebotomists to get some blood.

Next she said I needed another CT scan because there is an abnormality in my duodenum and it’s the 2nd time that this has shown up. They aren’t concerned just want to sort out what it could be. If they can stop the awful belly ache I get sometimes and the running to the loo I’d be eternally grateful.

Next she said that I’m to stop my Tacrolimus. This is the immunosuppression drug. Apparently it has to be well out of your system before I can start taking the new one on Saturday.

On top of all this I’ve also hurt my back and because my bone density test has come back saying I now have osteoporosis, she wants me to have an X-ray. I have two slightly protruding discs. One in my lower back and the other in the middle to my back. She also wants me to start on some alendronic acid to see if they can toughen my bones a bit. This problem has been caused by years of taking steroids.

Lastly we talked about the line. She has been in touch with the interventional radiologist drs who need to treat me and remove the line. This dr has said depending on what they find maybe the line can be protected. Camilla is going to have a meeting with the drs doing the procedure to look at all the options. We also talked about other ways to gain access to me intravenously.  I’m being referred to the IV team for that.

The haematology doctors and nurses are a brilliant team to be under and I’m very lucky to have so many experts in my corner.

I’m also blessed to have such a wonderful partner. After 28 years together, to still be going so strong is a testament to our ability to rise to the challenges. Poor Maggie suffers with me through it all. She also has her wings clipped by my inability to travel. At this stage in our lives we thought we’d be travelling the world. I owe a debt of gratitude that in so many ways can never be repaid.

I also have a wonderfully supportive family.  To them I say thank you all for your love and support of Maggie and I. I know it’s not easy for any of you, especially when I get really sick. Here’s hoping for a happy and healthy new year for all of us.

I thought I’d finish this long update with my favourite Christmas reading and quote. I found the reading on line and just changed it a bit.

1 Corinthians 13 Christmas Style

 If I decorate my house perfectly with lovely tartan bows, strands of twinkling lights, and shiny baubles, but do not show love to my family – I’m just another decorator.

 If I slave away in the kitchen, baking dozens of Christmas treats, preparing gourmet meals, and arranging a beautifully adorned table, but do not show love to my family – I’m just another cook.

If I work at the soup kitchen, sing carol in the nursing home, and give all that I have to charity, but do not show love to my family – it profits me nothing.

If I hang on the tree shimmering angels and glittery snowflakes, attend a myriad of Christmas parties, and sing in the choir’s cantata but do not focus on Christ, I have missed the point.

Love stops the cooking to hug the child.

Love sets aside the decorating to kiss the partner.

Love is kind, though harried and tired.

Love doesn’t envy another home that has coordinated Christmas china and table linens.

Love doesn’t yell at the kids to get out of your way.

Love doesn’t give only to those who are able to give in return, but rejoices in giving to those who can’t.

Love bears all things, believes all things, hopes all things, and endures all things.

Love never fails.  Video games will break; jewellery will be lost; golf clubs will rust.  But giving the gift of love will endure.

“love is what’s with you in the room at Christmas if you just stop opening your presents and listen”

I know this time of year can also be difficult for some especially if you are separated from loved ones or are recently bereaved. If you’re feeling sad light any candle, even a tiny one and say to the darkness, “I beg to differ.” Remember it’s people who die not the love that was shared. “When all that’s left of me is love, give me away”

Maggie and I hope you have a great day tomorrow sharing the love. Merry Christmas Xx

What a clot!

It seems the weather backed how I was feeling today. I’ve attached photos of the moody skies over London which I viewed from the hospital waiting room. It’s not just today. It’s been one of those weeks. I was meant to have 4 different appointments as the week unfolded. I went to the first one on Tuesday and that’s when the fun and games started.

I was sat in the haematology waiting room when the consultant I know very well came over. She told me she had asked a new consultant to the department to see me. She was hoping that this consultants fresh eyes might pick up on something that is being missed. I was happy with this and appreciate that they are still trying hard to fix me.

The new consultant was lovely. She asked me how I was feeling. Then she said had I noticed my face and neck were swollen. I said yes but I’d put it down to steroids. She said that Victoria, my long standing consultant, felt that I didn’t look right and the puffiness was not normal. The new doc gave me a really good going over and said she felt I had a clot and needed an urgent CT scan. I explained I had a dermatology appointment but the doc insisted this was more important and dermatology would need to be rescheduled.

I had the scan and a clot was provisionally confirmed . They still needed the radiographer to report on it but they wanted to start treatment straight away. I now have to inject myself every day with a large dose of blood thinning medication. I was asked to come back on Thursday to discuss treatment plans. I had arrived at Kings at 12 setting off from home an hour earlier. I got home after 8pm. What a day!

Today I set off for the hospital at 2pm. I had to go to Guys first for a dental appointment. They are very good at looking after my mouth GvHD. Unfortunately due to the weather, traffic conditions and the fact that everything takes so much longer when you are medically complicated, I had little time to get to haematology and rheumatology where I had follow up appointments. Guess why happened? Yet again I missed an appointment and couldn’t see the rheumatologist. They had cancelled my last app so I was long over due a review. Haematology told me that the clot is outside my Hickman line but they are still waiting for the full report. Then they dropped the bombshell. My line has to come out. Regular readers of my blog will know I’ve had 6 lines inserted. They are incredibly painful to have put in and taken out but it’s the only way to access my ECP treatment. I was also told I can’t have ECP until I’m 6 weeks clear of treatment for the clot. This thought fills me with dread. This means my GvHD symptoms will flare. Also there is no guarantee they will put a new line in as there maybe too much damage in the vessels. I’m absolutely gutted.

Fortunately I bumped into the specialist nurse from ECP. I explained what’s happening to her. She said it might be possible to give me ECP once I’m off the blood thinners. One of the possibilities is that I get admitted and have a femoral line inserted. This goes into your groin. Then have ECP and  go home the next day. Then the whole process is repeated every two weeks. Sometimes I just want to shout and scream. It’s hard enough coping with all this any way, yet alone have to put up with all these complications. It’s rare that I feel sorry for myself but this has pissed me off.

I think what’s added to my mood is missing the other two appointments. My skin is awful just now. It bruises really easily but that’s probably down to the steroids which the new doc slowed down the weening of.  Now I drop by 1mg every 10 days. I’m currently down to 9mgs. Can’t wait to be off them. As well as bruising my skin is very very itchy. That is a quality of life (QOL) issue. It’s like having electric ants crawling all over me at times. It’s almost unbearable. I can control myself and not scratch when I’m awake but when I’m asleep that filter doesn’t work amd I wake up covered in bruised and scratches. They look awful as you can see from the pictures.  The red ones are from scratching and the blue/purple are from where they tried to get a cannulas in for my CT scan. I also missed rheumatology and really wanted some tips on managing my very stiff, painful and weak muscles and joints. Again this is a QoL issue.

I know the clot is life threatening. I’m not stupid and I’m grateful that my fantastic team picked it up. What saddens me is that the appointments that would have helped my QoL were the ones that had to be shifted. Yet in a weird way they will make more difference to how I feel.

Despite missing out, both departments were helpful. The receptionist squeezed me in next week for the dermatologist and I literally bumped into my rheumatology consultant in the corridor. He said he would see me in a special clinic he is running on New Years Eve I guess I should be grateful and concentrate on the fact that Kings are saving my life again and nice people heard me and accommodated my request to be seen sooner rather than later.

If you are the praying type, please pray that things work out and the clot disperses and that the GvHD (Graft Verses Host Disease)  doesn’t get too bad and I can start treatment again as swiftly as is possible.

Finally I also want to say thank you to my long suffering partner and family who always bear the brunt of news like this and carry the pain and tension too. Love you all loads.

Frustrating Times

I’ve had two very contrasting appointments at the hospital this week. The first was in rheumatology. When I arrived the receptionist told me my appointment had been changed and was now on 27th. I said no one had told me and if they had I would have said that’s no good because I’m in Germany that week. It is very irritating when these things happen. The receptionist could not give me another appointment till after March. He was very apologetic and gave me the secretary’s number to get an earlier appointment. He couldn’t tell me why it was that I hadn’t been informed.

I rang the secretary later. She couldn’t tell me why I hadn’t been informed of any change. I said it had happened a few times before. She did not answer this nor did she offer any apology. I explained I was away on 27th. She then offered 29th. I apologised and said I had a funeral that day. She said it would be a while then. She offered one more date and when I couldn’t do that because I already had a hospital appointment, she gave up. She said I had to ring one of the nurses on the helpline to see when they wanted to see me. I explained I had a transplant and haematology wanted an opinion from rheumatology. She said the nurses would have to sort it out.

I rang the nurses next and after a brief conversation to explain was given an appointment for mid December.

If you look at this objectively then it’s not the best customer service model. I had made an unnecessary journey to attend an appointment that had been moved but this fact has not been communicated with me. I then had to make all these phone calls to sort it out. Because I dare to have a life outside of hospital appointments and couldn’t attend the next appointment offered I was made to feel like I was a problem and had to be past on to another person. No one apologised or explained why the problem arose. That makes me think it will happen again. It’s frustrating and I feel helpless. I just have to hope that at some point lessons will be learnt.

The other contrasting appointment was with my lovely ECP nurses at Guys. I arrived and settled in and was bantering with the staff as patients around me.  When they tried to connect my pipes up there was a problem. My Hickman line has always been temperamental but it just wouldn’t play ball. They tried for an hour but only managed to get 300mls of 1500mls out so had to give up. They said they’d try again next day. As you can see from all the bruises they really did try and day 2 managed to get one cannula in. That meant I could have half a treatment. Guys will now contact Kings to work out what to do with the line. Fingers crossed that it’s easily sorted.

So neither of these appointments went to plan but ECP had a problem solving approach to the situation. Whereas rheumatology had the culture of the patient is the problem if they don’t fit with our solution.

It’s about time all departments had patient reps to ensure a patient voice is expressed and heard. The reason hospitals exist is because there are patients. Patients are not a problem. They are the reason for the medical profession and the NHS. Let’s please put patients at the centre and embrace them as partners and equals.

I’m doing all this on top of feeling really tired. I didn’t get out of bed till noon today. I haven’t done that since being a teenager. Lol.

Really hoping the extra digging that my lovely haematology team have been doing will come to something and we get some answers soon.

Wherever you are and whatever you are struggling with please remember that if the world is silent on an issue then one voice can be very powerful. Xx

Weird Times

I’m having a bit of a weird time of it just now. I feel really exhausted. I slept 12 hours last night and still wanted to nod off when I was having my ECP. It’s so challenging to have a tiredness that resting doesn’t improve but that you also can’t shake off. When other people say to me “ooh I’m so tired” I just nod and smile and think if only you knew what this invasive exhaustion was like. Never mind. Worse things happen at sea!

Despite my exhaustion and aches and pains the high dose steroids are helping in some respects. I don’t have that awful stomach pain. Just the occasional dull ache which is nothing compared to how it was. Let’s hope that as I ween off the steroids that the pain stays away. It’s also nice to have an appetite. Not something that happens to me often.

The other thing that is getting to me is the weakness in my legs. I’m really struggling now to get up my flight of stairs. I’m having to haul myself up on the banister. I also get really out of breath. I find myself sighing often and taking long deep breaths. It’s weird. As a chorister, I’ve noticed my breath control is poor and I’m not getting to the end of the line. I’m utterly convinced a 95 year old has run off with my body and is having a great time. The only problem is she has left me with her dilapidated body to make the most of.  I shouldn’t complain. At least I’m still breathing.

My full blood count is pretty good just now. This is also weird as last month it looked like my transplant had failed and there was talk of me needing a second transplant. I like to keep everyone guessing. Whats causing me grief is my U&Es and electrolytes. It seems my kidneys are not happy and need an eye kept on them. The other thing I’ve noticed is my blood sugar level is a bit high. Maybe it’s my lunch. Will see what it is tomorrow morning. It’s currently 11.7. The last thing I need is diabetes on top of everything else. Let’s hope it’s just a blip.

For now I’m gonna pretend everything is fine and dandy. Whatever will be, will be.

Have a good weekend one and all wherever you are at. I encourage you all in the philosophy of preparing for the worst, hoping for the best and living in whatever the reality is. I’m especially holding in the light Nick and Marley and all those who watch and wait.

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