Some of the best days of your life haven’t happened yet!

Hi there everyone,

Hope your christmasses have brought some light and love to your lives. If Christmas is a tough time for you, I hope you have come out the other side ok.

I’ve just recorded a review of my year for BBC Radio Kent. So much has happened. It’s incredible when you look back in one session at all the ups and downs.

What I’ve realised is I finish the year stronger both physically and emotionally from how I started the year and I’ve learnt lots about myself.

I also finish the year having the strength to start taking Church services once more and maybe being able to do some voluntary work.

That doesn’t mean life is plain sailing. I woke up Boxing Day to discover I had some deep purple bruises. Very pretty colour but I have no recollection of knocking myself. Weird or what?

The last couple of weeks my legs have been swelling too. This seems to be getting worse. I start the day with them puffy and by the end of the day I have no ankles and not much knee either. They are also so heavy and stiff. I’ve no idea why this is happening but I guess it will all become clear at some point.

Tomorrow I am off to Guys Cancer Centre to have a urokianase Infusion over 2 hours. The ECP nurses don’t think it will work but the IV specialist team want to try it to see if they can get my line working properly.  My little sis Gail is coming with me and we are going to have a nice afternoon together after by having lunch and then going to visit The Shard.

It’s so important to have a mixture of nice treats alongside all the challenges and hospital appointments. I’m looking forward to there being more treats this year and lots more mischief...

If you have an idea for some treats or mischief that you’d like to take me on, get in touch. I know I haven’t been able to see all of you since the transplant. I know I also have some treats left over from my 50th birthday that have been on long term hold. If you can remember making an offer, I feel I’m now ready to do these things. Please send me a private message with the suggestion of a few dates.

So as we come to the end of the year and thinking about starting afresh, I would just like to remind you that 365 days means 365 new chances and it’s up to you what you do with those opportunities. I hope you enjoy all the possibilities that come your way and hold on to the fact that some of the best days of your life haven’t happened yet.

A challenging end to the year

Hello Everyone,

I hope wherever you are in life, this post finds you content and with some inner peace.

I’ve had a very long day of hospital appointments. I started with my 8th session of ECP at Guys. Today was day 2 and yesterday I explained to the fantastic team that I was due to move on to Kings after finishing on day 2 and I had another 3 appointments. They were lovely and moved my appointment with them forward by an hour. All kicked off well at 11.30 and despite only one of my tubes (lumen) working, it still all ran smoothly.

I left there at 2.15pm to get to a 2.20pm appointment at Kings. I am pretty resourceful but even I can’t cross London that quickly. I did well though to get there and in the Chest Unit for 3pm. They did their tests and I huffed and puffed in their machines as instructed by a trainee in good humour. It makes such a difference when people are jolly.

Then I went down to Haematology. After 17 years of attending the department, it’s like a 2nd home to me. I brought them some Christmas cheer, as I did in ECP too. They were all very pleased with their tower of biscuits, cake and chocolate. It’s always a good thing to acknowledge and say thank you when people do a good job even though it’s difficult at times.

By the time I saw the lovely Carmel (doctor) she already had access to my lung function test. It seems my lungs are only working at 45%. This is a 20% reduction from last year and indicates GVHD is in my lungs too, as well as all the other places. What this means in more medication. Sigh. At least I’ve got an excuse for being out of breath and don’t just have to put it down to being unfit!

Then we went through my blood results. My red cells continue to drop and I’m very likely to be in need of a blood transfusion soon. If you have always thought of giving blood but haven’t got round to it, now might be a good time to take the plunge.

My liver results are a little better while my kidney results are not so good. The white cells and platelets are as expected and no worries in that department.

Next we discussed my recent bone marrow biopsy and what the results could mean. Carmel explained that my bone marrow cells are 100% Gail’s and that’s a good thing. For someone of my age my marrow is still hypocellular. This means there are not as many cells as there should be in my marrow. I’m not worried about this as I’ve had empty marrows in the past. Carmel then said that the cells were still Dysplastic looking. This means they are still large and not regular looking. This could be because of one of two things. Either all the toxic medicine I’ve taken, and/or currently still take could be impacting on my marrow and making it look out of sorts, or there is still an element of MDS lurking around. Only time will tell which one it is. They will keep a close eye on me and treat and react according to findings.

I then had even more bloods taken to look at what’s going on. The good news is I’ve been given a whole 4 weeks gap before attending Haematology again. I still have ECP after 2 weeks but at least there is a bit of breathing space.

The Appointments continue throughout this week. On thurs, which is my lovely little life saving sisters birthday I have to swallow a capsule endoscopy. That means starving myself from midday tomorrow for 30 hours apart from the disgusting medication they give you. What joy!

My final appointment of the week is Friday when I see a podiatrist due to a recurrent infection in my toe. Maybe then I can concentrate on Christmas.

On Saturday I’m going out for a lovely treat with my big sis Dawn and Will, little sis Gail, Jeff and Jess and my daughter Annie and the grandkids. At least there is something nice to look forward to.

I got home just after 7pm today after all those appointments. A long day with some mixed blessings.

Throughout my appointments today I tried to get into the Christmas spirit. I was wearing a hat that moved and played music and I had flashing lights wrapped over me whilst enduring the rigours of ECP and bringing some smiles to all I encountered.

It seems the NHS are going to need to keep hold of me for a little longer. Thank goodness for all the loving support I have and the fantastic healthcare professional I have surrounding me. I wish you all a very Merry Christmas.

Mixed Blessings

Today was a real mixed day.

Over the weekend my car was broken into. The thieves ransacked the car and stole my dash cam and some other personal items. The lead for the dash cam was wrapped around the rear view mirror. Instead of unplugging it, the scumbags yanked the camera which ripped the rear view mirror off and bring down the housing unit for the city breaking system.

The thieves were disturbed further down the road whilst rummaging in a BMW. I’ve since found out that keyless entry cars are vulnerable to being hacked and that the only way to stop this is to keep your keys in a metal box or buy a Farraday Cage Protection pouch. You can get these for less that £10 on line. I wish I had known this before. Am only posting this in detail so that other readers can protect themselves and their property.

I went to the hospital today for an extra appointment because the consultant was worried about me. My partner took the car to the dealership to see if it could be fixed. It was a bit of a struggle going on my own. Another hidden aspect to having had the car trashed.

The staff at Kings in the supportive therapy unit were lovely, as always. My blood pressure remains a little high. My temp was ok my oxygen levels were slightly low. They took bloods and swabs of my throat and nose.

The bloods came back showing that I’m still anaemic but at present don’t need a transfusion. They will check again next week. My white cells and platelets are ok though, so that’s good. Apparently my kidneys are showing signs of being unhappy and will need a closer eye kept on them. The biggest concern is that my bone marrow biopsy has shown that I still have some signs of dysplasia. The young doctor I saw couldn’t comment further but said to speak to the consultant next week. She did say the consultant said it’s ok and this can happen.

I came out of the hospital feeling a little shell shocked. I was greeted by a beautiful sunset and it reminded me to keep the faith and believe in the light and not to concentrate on the darkness.

When I got home my partner told me the garage had fixed the car as a good will gesture for FREE. Oh my days. What with that and people setting up a just giving page for me, I’ve been fighting back the tears all evening.

Despite all the horrible things that have happened to me I still have so many good things in my life. There are definitely more decent, honest and loving people in the world than thriving scumbags.

Thank you for your continued love and support. I will keep you posted when I have more news. In the meantime I’m sending you love, hugs and prayers and lots of light for the dark days.

Xx

Thank God for the NHS

What a day! I left home at 10.30am to set off for my first hospital appointment of the day. This was to see the ECP specialist. Today I was met with a delightful dr from Portugal. She was lovely and had a brilliant manner. She was full of energy and enthusiasm and extremely thorough. She treated my skin cancer on my back and checked out another lesion and said it was ok but had to be kept an eye on. The treatment was fairly painful but she was so upbeat it was contagious. 

One of the ongoing problems I’ve been having is sore, dry and cracked lips that peel and burn on a virtually daily basis. This is part of the GVHD. This lovely dr noticed that and I’ve been prescribed some heavy duty cream that you can’t drink alcohol with. The list of side effects is endless. Who would have thought a lip cream could be so toxic. Oh my days! Let’s hope it does the job. 

Next I had ECP. As usual only one lumen was working so it all takes longer. It was my 7th cycle of ECP. As this was day 2 I also had to have a dressing change. I’d like you to imagine you have sensitive skin. Now imagine having a plaster on it. The plaster or dressing has to be changed once a week. The longer time goes by, as it is peeled off, the skin becomes more irritable and raw looking. There are still 4 stitches holding everything in place as well as the hole that the line goes in. Next, to add to the experience, is a rub down with an alcohol solution. This can make the bravest soul wince. It really does sting. The worst thing about it is you know you are going to go through this every week for at least 6 months and the skin is only going to get more sensitive. These are some of the hidden issues to having to live with cancer and it’s aftermath. 

I managed to eat half my lunch whilst attached to the machine but I did enjoy the tea and biscuits. 

Next I had to get in my car and drive from Guys to Kings where I saw one of my lovely consultants. Kavita took one look at me and said “I don’t like the look of you this week” She loves me really 😉 She told me my bloods were giving cause for concern. I’ve lost about a 3rd of my red cells and the marker that tells them red cells are being destroyed is raised. She has adjusted some of my medication to see if this halts the slide and wants me to come back for a review on Monday. If things are still low I may need a blood transfusion or some injections of a drug that boosts red blood cells. Then she wants to see me again the week after that. I think they just like having me around. Lol. 

I was also seen by the dietician and my CNS, all of whom are great people and very reassuring. That’s one of the reasons why I am supporting 

#myCNSmatters

I finally got home at 7pm. I managed 2/3rds of my dinner before heading up to bed with a cuppa and some chocolate. Everybody knows that love and hugs and a little bit of chocolate make the world good round. 

Can you imagine how much all that cost today. It’s £3000 just for each cycle of ECP! Good job Richard Brandson isn’t in charge of healthcare because I don’t think I’d qualify for cover. Thank God for the NHS and thank God for so many amazing medics. Everyone I met today was a credit to their profession. It was clear that in some places they were short staffed but they continue to be friendly, professional and really dedicated human beings. Thank you so much for making my long day so enjoyable despite the sore bits and the bad results. You deserve a huge pay rise and all the recognition I can muster.

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.