Nothing not even cancer or death can stop love

Hello Everyone,

Well my cold turns out to be Respiratory Syncytial Virus Infection. (RSV). From reading up on it, it mainly affects babies, older folk in care homes and people like me with compromised or suppressed immune systems. My consultant sent me an email with the good news and said I would have to take some extra antivirals for 2 weeks. I’ve been prescribed Ribavirin.

When I took the prescription to the hospital pharmacy I was told the prescription was wrong as the dose was too high for someone of my weight and in fact was twice as much. I suggested the pharmacist contacted the on call haematologist which he did. She told him that was the correct dose for treating someone post transplant. I’m always glad to oblige and help people learn something new.

The tablets are disgusting. They are only small but they have a powerful effect and I am feeling extra nauseous.

I also had to collect a bowel permeability test. This measures the amount of inflammation in my gut. It involves drinking a syrup first thing in the morning then collecting every bit of urine for the next 5 hours. I have to fast from the night before until 3 hours into the test. The problem will be trying to fit 3 doses of the antivirals that day because they have to be taken with food.

It’s a never ending job keeping up with all these bits and pieces. You have to be highly organised and that’s just remembering all the appointments. This week I have an appointment on Tues, Weds and Thurs. I have a CT booked for the week after next. The week after that I have an extra appointment with an oral medicine specialist and a rheumatologist. I’m waiting to see a physio and a gastroendocrinologist. This is on top of 2 days every fortnight in the Guys Cancer Centre and being seen by the haematologist every 2 weeks. ‘Tis a real challenge fitting in any “normal” time  as well as all these appointments. However I still do and I’ve had a nice birthday and also been out to celebrate my gorgeous nieces 18th birthday.

In honour of my birthday, if any of you feel so moved and have a little spare cash, you may like to donate to the small charity that supports people with my rare cancer. It does an incredible amount of good nationally for people, who like me, have had to make this enormous change in our lives as we learn to live differently.

http://uk.virginmoneygiving.com/SomeoneSpecial/RebelrevfightsMDS

I’m proud of my little sis Gail and her husband Jeff for raising such an amazing young woman. She is such a credit to you. Looking forward to seeing you all on the official birthday of Tuesday. Was nice to spend some social time with my big sis Dawn Marsh and her two eldest Danny and Karen

Before I sign off I’d like to say I’m thinking of my lovely Aunt Vena who is really sick in hospital and my cousin’s who are keeping a bedside vigil. Shelley, Kim, Deborah, Mark and Steve you are a credit to your mum and she loves you all so much. You could feel the love in the air this afternoon. Don’t you ever forget that love doesn’t die. People do but love continues.

Thank God for the good people in the world

Here is this weeks update that has been full of light and love as well as the usual challenges. 

For the first time ever, both lines on my Hickman worked perfectly this week. This was the case for day 2 as well. I’m well pleased. It may be because I’ve got a caught a cough and cold. All the coughing may have dislodged something. I’m hoping that the antibiotics and antivirals as well as antifungal drugs do their stuff and it passes soon. I will admit to feeling pretty rotten just now. I didn’t get up till 11.30am today. Lol. 

I’m still bruising nicely. It seems this may be a result of all the steroids I continue to have to take. 

Some more good news is my car key has been found. Thank you to all those who prayed to St Anthony, who is the patron saint of lost things or St Jude, who is the patron saint of lost causes or who just prayed or sent positive vibes. I’m so pleased my chemo brain only misplaced the key rather than lost it out in the street. It is now safely in a Farraday Pouch and has a tracker keyring attached curtesy of my big sis Dawn. 

Also a huge thank you to all of you who contributed to the crowd funding set up by my good friend Tina after a suggestion from Alan. I picked up a new dash cam today to replace the one stolen and I had it hard wired to the car. You are a brilliant bunch of people and I am so blessed to have so many wonderful people in my life. I hope I have managed to tag each of you who donated apart from a couple of anonymous donors. I may also invest in some CCTV with what’s left over in order to prevent a reoccurrence. 

The latest from the consultant is that the horrible pain I get after eating may be as a result of my pancreas not working properly. They want me to do one more test before commencing on yet another drug which may help sort things out. I wish I could stop taking tablets but if it helps I’ll put up with it. The pain is so awful I’m willing to try anything. I’m also being referred to a gut specialist doctor to see if anything else can be done. 

It also seems that despite my never give up attitude and going up and down the stairs as often as I can, I have some muscle wastage. This, again, is because of the steroids I take. I’ve been referred to a physio for some help, as it’s becoming more of a struggle to get up and down the stairs. It’s horrible to feel that you are going backwards despite your best efforts. 

The other thing I needed this week was a B12 injection. Let’s hope that helps with the ongoing anaemia I am experiencing. 

I’ve been thinking about all the good people in this world. Sometimes things can feel a little overwhelming. It reminds me of this wonderful quote which I will finish with. “To the world you are just one person but to one person you may be the world!”

The gift of music

I’ve been having an interesting few days. I’m away with my long suffering partner for a few days R&R. We have decided that as I can’t travel abroad just now we will explore the uk. On this occasion we also combined the trip with my choir singing at Portsmouth Cathedral. 

Yesterday morning I set off for my rehearsal. I managed to find a high stool to perch on. I really enjoyed our 90min rehearsal. Some of the music was brand new to me. Some I had last sung as a child. We then had a nice lunch break and a chance to catch up socially with each other. Sadly it was too cold to take a “stroll” on the seafront. Then it was back to the Cathedral. The acoustics were amazing as we rehearsed in place ahead of the service. We all enjoyed ourselves and were able to sing to our full potential as the building was very kind to our voices. This meant a fair bit of standing for me. I sat whenever I could but in order to sing well it’s important to have good posture. 

After evensong some of us went for a meal to celebrate Simon, our choir trainers birthday. By the time we came back to the hotel I was happy but exhausted and in pain. 

Sadly I still get this awful gut ache after I’ve eaten as part of the GVHD. 

Today I’ve suffered from exhaustion. We got up for breakfast and then I needed a nap before we went out. I’ve felt cold and weak all day while out. Tonight the gut ache started in the restaurant and I was almost doubled over when we got back to the hotel. I’m glad I had the foresight to being a hot water bottle. I curled up in bed in agony until the pain wore off and I slept for a while. 

I’ve been very pale today too. It’s the price I pay for exerting myself yesterday. I wouldn’t have it any other way though. A few months ago when I couldn’t hear I doubted I would ever sing again. Then I got my new hearing aids and yesterday I was able to hold my own. There was only 4 sopranos singing my part and I was able to complement my colleagues and contribute fully. I am so grateful that despite everything I can still find these pleasures in life. 

Tomorrow I will do a few more tourist things around here, like visiting the Mary Rose before I head back to London. 

Tuesday I have an appointment with my consultant. I hope they have some good news for me. The way I look and feel though does make me wonder...

My encouragement to everyone is to push it a bit and do something you enjoy. Even if you have to have a day of tired exhaustion, it’s worth the lift it gives you emotionally and spiritually. 

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.