A trying week

Following on from my latest I’ve been having a real mixed bag of a time in many respects. I’ve had some lovely weekends with my siblings. The problem is the weeks in between. 

After day 1 of my 6th session of ECP where I had been made to wait 90mins before I could start my treatment due to needing to see a specialist and I had also managed to fit in an appointment with my dentist before all this, I approached day 2 with trepidation. I had to have my one year bone marrow biopsy at Kings and when that was done, drive to Guys and have my next session of ECP. I was relieved to find that a registrar was doing the biopsies that morning. Relieved because that meant she would be experienced. I know the younger ones have to learn too and I’ve had many practice on me, but just now I feel delicate and don’t want to be pulled about more than I have to be. Kate, the registrar, was great. She was friendly and professional and had an excellent bedside manner. She was also very proficient. The biopsy of course hurt when it came to taking out the core from in the bone but the liquid bit wasn’t so bad. The bruising was minimal as you can see and it was only painful for 24 hours. Now it only hurts if there is any pressure on it. 

As soon as they let me leave Kings I got myself to Guys as quickly as possible only to discover that one of the machines was out of order and I had been bumped from the list and again had to wait 90mins to be connected up. When you have just had a bone marrow biopsy, it’s like being kicked in the back by a horse. The last thing I needed was a long wait in a hard plastic chair. It also meant that once again I’d be driving home in the rush hour.  Thems the breaks though and there was nothing I could do about it. 

When I finally went in I kept my fingers crossed that the extra medicine that had been put in my faulty Hickman Line would have unblocked it. Sadly this was not the case. I had to have a single needle session which takes nearly twice as long. At the end of the season the line expert came back to try and get the line going again but it was to no avail. They are talking about doing another linogramme. Sigh. I’m going to be so full of radiation soon you will see me glow! 

I was very pleased to get home and get myself more comfortable. During the night though I woke up feeling sick and had a headache. This didn’t improve when I got up. I had a few sips of tea and then got sick. I wasn’t able to take any medication for 24hours and I spent most of it asleep. I also had a low grade fever. My poor long suffering partner was really worried. 

Thank goodness after nicking a migraine tablet in the middle of the next night by morning I started to feel human and was able to eat and drink again. More importantly I was also able to take my medication. 

I’ve felt weak and wobbly all week and a bit out of sorts. I’m a bit breathless and my bones ache. My stomach has been churning and I’ve had that delicate feeling. 

It’s weird. I can put up with so much. I’ve got used to not being able to do things but I hate feeling ill. 

Let’s hope things change soon and that it was just a reaction to the ECP. 

Any way I’m in good spirits. I’ve got some lovely things to look forward to and I’m determined to come out on top of all this. One thing that made my day today was winning an Advent calendar from Leukaemia Care because I commented on their social media campaign to explain why #myCNSmatters. I’ve met some fantastic CNS (clinical nurse specialists) over the years. They have helped keep me sane in the rough times. There are also a great bunch of nurses in the Haematology outpatient supportive therapy unit and on Davidson Ward at Kings. I am always willing to stand up for our nurses and the nhs. Without them I would not be here. Thank you for saving my life over and over again. 

Wherever you are and whatever you are doing I hope you can find the blessings in your life and that they warm your soul during the dark times. 

Another awful bone martow biopsy.

So here’s my latest update. I was at Guys today for round 6 of ECP. Due to the problems with my line, my wonderful nurses had arranged for me to see a specialist line care practitioner. They were meant to arrive at 12.30 but turned up nearer 2pm. Sigh. She was nice, even though she didn’t apologise for keeping me waiting. She could only get one lumen working so the plan was to use that one and then put in the medical equivalent of Mr Muscle in my line overnight to see if it works tomorrow. I also have to have another chest X-ray in the morning. If that doesn’t work they are going to ask for permission to get this specialist drug to put in the line that is currently not available in the Trust. If that doesn’t work they have ordered another line where the tubing is not collapsible. At least there is a plan to follow. Let’s hope the Mr Muscle works and we don’t have to escalate it to any of the other levels. 

As you can see from the picture, my skin is really sensitive. I had a gentle scratch of my back, and I do mean gentle and this was the result! Oh my days. Maybe I’ll get a messages etched on it. 

Tomorrow as well as being day 2 of ECP, is also a dreaded bone marrow biopsy. I have to go to Kings for 10.30 to have the biopsy and then get over to Guys for x-ray and ECP at 12.30. Every MDS or blood cancer patient will tell you they hate bone marrow biopsies. They are a necessary evil. This is my one year check up to see how my cells or rather Gail’s cells are doing. Keep everything crossed for me. 

Whatever you are doing tomorrow I hope it’s more fun than I’m going to have. I will do my best to keep smiling though because it makes people wonder what you’ve been up to. 

Xx

Prayer to St Jude

I want to start this post by saying I’m ok. I wish I could say I had some good news though. Sadly my Hickman Line is still not working!Those of you following my story will know this is the 3rd Line I’ve had inserted in the last few weeks.

Today I went for my 5th cycle of ECP treatment and the first time this line was used. Despite the best efforts of Ali and Anna who are fantastic nurses, the damned line would not work. They are completely perplexed and were going to email the great and the good for some advice as to what to do next.

It took a few attempts to cannulate me but eventually we were up and running. It took 2.5hrs to complete the treatment today which was good because we got away just before the rush hour.

As for my GVHD symptoms. I still have sores in my mouth. They are slowly getting better but occasionally flare. The paste and glue which goes on is really effective. My eyes are often dry and feel out of sorts. My guts really hurt most nights after eating. It’s a horrible pain but only lasts about an hour. I find a hot water bottle helps. My muscles and joints are still out of sorts. It’s like the skin is tight on my legs and I cant bend them properly. I also can’t make a fist in the mornings. When I get out of bed the ministry of funny walks kicks into action.

Despite all this I remain as cheerful as I can. I try to get out and do ordinary things. The other day I went to see the film Breathe. If you haven’t seen it, do make an effort. It’s inspirational. Absolutely amazing what the human spirit can endure and overcome.

I have met two brand new human beings in the form of William and Bonita and had some lovely cuddles.

One of the things frustrating me just now is loosing things. I guess it’s the last vestiges of chemo brain. The latest thing I’ve lost is my rather expensive car key. If you are the praying type please pray I find it. Maybe we need to evoke St Jude who is the patron saint of lost causes. Lol.

As the evenings close in it can be easy to only see the darkness. What helps me is knowing that it’s only when it’s dark that we can see the stars.

Hobson’s Choice

My line is going several different colours. Let’s hope it works come Thurs when I have my next round of ECP.

Sometimes life is a bit of a Hobson’s Choice. What would you do in this situation?

For the last few weeks I’ve been getting really bad stomach ache. This is especially apparent in the evenings after I’ve eaten. I sit or lie down with a heat pad on my tummy to try and relieve the discomfort. It makes me feel sick and unwell for the hour or two that it lasts.

To treat it I was given extra steroids medication. I already take prednisalone but I’m now also taking budesonide which works more specifically on your gut lining. The problem is it makes me feel really shaky and my legs feel very weak. Steroids in general are bad for your bones and also really suppress your immunity. I’ve been on them in varying doses for 3 years.

I always try to cut back as soon as I can. I’ve started this weaning process but I have the gut ache again.

It’s so bloody annoying. Will see what the docs say next week. They will probably say the steroids have to go back up because they don’t want me loosing weight.

I’d just like a month in the Bahamas with no pain and no pills. It’s good to have a fantasy life. Lol.

At least I’m still here when so many others never made it this far. Thinking of those less fortunate than me and sending light and love to those who need it.