Rebel Rev is distraught

I’m pleased to say that since being home I’ve very much enjoyed sleeping in my own bed and also appreciated some home cooked food.

I feel as weak as a kitten and somewhat frail. That will pass. At least I am blessed with a warrior spirit.

I am back at Kings for haematology on Tues and then Guys Tues and Weds for extra ECP. Fingers crossed things show they continue to improve.

Today I’ve been trying to pack away the Christmas decorations.  I was taken in to hospital before 12th night, so they were still up when I was admitted. It’s taken me all day to slowly put things in their boxes. It’s so good to be able to do it, even if it is painfully slow.

Despite my brave front there is a bit of me that is broken hearted just now. I am not in the habit of losing things, especially expensive things. As regular readers will know I was devastated to lose one of my hearing aids while in hospital. Since then I’ve discovered my wedding ring has also vanished. I have no recollection of it being on my finger in the hospital or not. I only take it off sometimes when putting cream on. There is a possibility it fell off with the extra weight loss. That would be strange though because of the unusual style of the ring.

I have methodically gone through everything I brought back from the hospital and searched all the bags and clothes pockets. It’s no where to be seen. I’m now checking my bedroom at home in case I didn’t put it on the day I was admitted.

I know I got really ill and lost a couple of days and was really unaware of my surroundings but the thought of losing something so precious to me is almost too much to bear. I know it’s just a ring and it can be replaced but it’s the one I’ve worn since our partnership and so has that sentimental attachment.

I went to bed early last night because I was feeling sad. I put some crap TV on to try and distract me. Some images came up of Sydney Australia. It made me cry because I so badly wanted to talk to Marlene and be comforted by her. She was the only person I ever let fuss over me. She could always make me feel better. Life can be so unfair. My loss is heavens gain. At least I know I always have an angel on my shoulder.

On a positive note, the amazing fund raising that Lyn and Richard set up is still astounding me. If I don’t find my ring I will have enough, once my new glasses are paid for, to travel to Ireland and have a new ring made. The ring originally came from Kenmare and is based on the Ring of Kerry.

In the meantime please keep praying to St Anthony and St Jude if you’re the praying sort. If not send some positive vibes for a successful search and find mission.

A 6th Hickman Line for Rebel Rev

Hello everyone. I hope you are having a good day wherever you are. 

I’ve had a blessed day with visits so far from Emma, Aunty Pat, and Sue Hoad. I’ve still got my little skin and blister Gail to come. Ain’t I lucky? 

The latest from me is that my poor arms have turned into sieves and can’t really cope with the daily blood tests and cannulas needed. I am having a new Hickman Line put in tomorrow. I know that will be unpleasant, specially as it’s only been out a week. My 6th vascular surgery. Fingers crossed it goes smoothly. It will certainly help my poor arms so will be worth the pain and discomfort. 

I’ve argued before that adult cancer wards should have access to some of the treats that children’s wards have. A gentle neck rub or head massage is a lovely de-stressing thing to experience. A manicure or pedicure or reflexology is a lovely treat for some. When your daily routine involves things like being stabbed 7 times in a bid to give you access to life saving treatment. Being locked in a room the size of a prison cell and unable to get out either because you are infectious or you have no immunity or both for 24/7 for weeks on end is no fun either. 

Another hard aspect of being an inpatient is you can’t see your grandchildren as no children are allowed on the ward. 

Imagine each day living on a very limited food menu unless friends or family bring something in. 

Imagine sleeping on a rubber mattress and rubber pillow every night for nights on end. 

Imagine peeing in a jug to measure the fact that your kidneys, which have been affected by the toxic medication you’ve had to take to save your life, are continuing to work and not failing. 

Imagine having to poo in a bedpan and have others inspect it and send it off for testing. 

Imagine having your ob’s taken at 2&6am every night. Then lots of noise and cheerful people when you don’t normally start grunting hello till 10am. 

Imagine the impact of all this on your nearest and dearest and the pain and worry they have on their faces at times.  

Imagine how stressful it is to have an hours journey to visit the person you love. How tired would that make you after a long admission? 

Imagine that music and singing is vital to you and your emotional health as it’s one of the few activities you can still do and then you lose such a degree of your hearing from toxic medicines that you have to stop singing. 

Imagine ballooning in weight because of high dose steroids and having to buy new clothes. 

Imagine losing 22kgs because your gut has stopped absorbing properly and having to buy new clothes. 

Imagine losing your mobility when on the inside you still want to be the person who flew down the right wing so fast that no one could catch you when playing football. 

Imagine attending virtually weekly/fortnightly hospital appointments for years, sometimes 4 or 5 times a week. 

Imagine having to give up a job you love. 

Imagine coming in to hospital feeling relatively ok then ended up thinking about Dignitas because you now feel so ill from the toxic medicine you need to save your life. 

Imagine losing your social life because you now don’t have any energy or your immunity is too low. 

Imagine having to learn to take truck loads of medication a day

Imagine adjusting to feeding yourself through a tube in your stomach. 

Imagine losing friends because they can’t cope with how much you suffer

Imagine making new friends through the patient forums and regular out patients waiting rooms and some of them dying. 

Imagine living with Damocles sword continuously poised over your head. 

It’s for all these reasons and many more that I argue adults with cancer and life limiting illnesses need treats too. I’m fortunate and blessed to have so many great people in my corner. Some have no one. Ellie's Friends is one of the few places I can see that is offering something but it seems that is patchy. 

If any of you are entrepreneurs, maybe you’d think about setting up a business that fills this gap in the market. 

I write this post not that I want you to feel sorry for me. I don’t need sympathy. Empathy is welcome though. The reason I write like this is just to give you a glimpse of living with cancer and the consequences of treatment. It’s also to say thank you to Lyn and Richard for setting up some fundraising for me to enable me to have some nice treats. Those of you that have donated have already made such a difference to me. My spirits have been really lifted by each of you whether I know you or not. 

My intention at present is to get the new glasses I need. I think a massage might be in order too and when I’m well enough I think the love and generosity you have shown will pay for me to have fully covered insurance for a holiday into Europe. 

For now I will concentrate on getting through the line insertion and getting out of here and back on my feet. Thank you for your part in helping me achieve this. 

Rebel Rev finds out she has 2 flu viruses

Dear All. Today’s update which has some good news and some bad news.

Firstly hope you like my Kinky Boots socks. Fun aren’t they. Thanks Dawn I love them. Bet you do too Gail.

Secondly I saw the doctor this morning. She told me that alongside influenza A and the line infection and chest infection, I also have tested positive for parainfluenza type 3. I’m obviously just greedy. You couldn’t make it up could you? If all this was happening to a character on Holby City, you wouldn’t believe it and think they were being over dramatic. Maybe someone should write my blogs up as a TV script. Lol.

The 3rd bit of news is that I went to audiology and they were lovely and very understanding of my predicament. They gave me a new hearing aid and have also arranged another hearing test for next week. This will assess if the antibiotics have damaged my hearing any further. I could’ve kissed them I was so happy. I was distraught at the thought of having to go back to standard hearing aids. That would’ve meant no more singing and that’s at least the one thing I can still do.

4th bit of news I went to ECP. They all hid because they knew I was coming without a line. Lol. It took 7 attempts to cannulate me. I had two attempts up in my bicep and one on my triceps as well as 4 attempts in the usual places. I’m black and blue and very sore now. The nurses looking after me today were the lovely Sukran and Anna. They both went above and beyond the call of duty. They had to stay with me to cajole the cannulas to keep working. The machine wasn’t happy and kept beeping. They were determined that I should at least have some treatment. They managed to get a half treatment completed which was an incredible achievement in very difficult circumstances. Thank you both. You were stars.

Due to how difficult it was they have cancelled tomorrow’s session and think it’s kinder to wait until I have a new line.

My last bit of news concerns many of you. I am utterly gobsmacked at the huge outpouring of love and support for me via the fundraiser that Richard and Lyn set up. Words fail me and I feel very humbled to have so many amazing people in my corner. I never asked for this to happen and on one level feel a bit embarrassed. That’s my problem though. I understand that people often feel helpless. Many of you want to offer to help but maybe live too far away or don’t know what you can do. I know people only give if they want to and it’s the fact that you want to that gives me such a warm glow inside and makes my spirit lighter. The fact that the target was exceeded in 48hrs is astounding. You are all special and even though I don’t know who you are, apart from those who’ve said, I am holding you in the light and counting the blessing of having you in my life.

Lung GvHD too. Oh boy!

So here’s my update for today.

My consultant has confirmed that the CT scan showed lung GvHD as well as infection. He is keen for me to continue with my ECP even though I don’t currently have a line. He wants a new line put in ASAP but it won’t be in time for this weeks treatment. That means I will have to endure the horrible process of being cannulated with as large cannulas as they can manage to enable the machine to work. Last time it took an hour just to get two cannulas in and then treatment was slow because they had to use smaller needles on me otherwise my veins blow.

As I’m at Guys cancer centre for the next 2 days I thought I’d better ring audiology and confess to having lost my hearing aid. They were lovely and have agreed to see me tomorrow before my ECP. She did say she thought they had a couple of spare hearing aids. I cried with relief. The thought of having to go back to the old style hearing aids and the lesser quality of sound was almost too much to bear.

The consultant also told me I need some immunoglobulins. Most people would have no clue what a vital role they play in our bodies. I had to have some once before. I’m very fortunate to have access to all this expensive medication and treatment. Yet again I owe a debt of gratitude to the NHS and the amazing array of highly qualified staff from all over the world, who have and are, saving my life all over again. Collaboration with  European partners on scientific studies, clinical trials and research has also played its part in keeping me going due to the rare nature of my illness. Being part of something bigger means progress is made quicker for everyone. I do fear what Brexit may mean and the implications.

I’m slowly reintroducing my feed as I’ve lost another 5kgs which I can little afford. This means needing to be close to the loo again. Sigh!

I had hoped to be able to go home today but have been told they love me so much they want to keep me till the end of the week. I’m going a little stir crazy in this room. Even prisoners get an hour out of their cells each day. Lol. I had some viral swabs done today and if they come back saying I’m no longer infectious I’ll be able to have a little wander.

It was lovely to see my sisters Gail ans Dawn yesterday. A rose between two thorns. Lol. Dawn managed to see Kinky Boots on its last day and got me some funky kinky boots socks. Fun eh?

As many of you will have seen, my lovely friends Richard and Lyn started a fundraising page for me. As I didn’t set it up, I can’t see who has donated but I can see the grand total. I am so blown away by such kindness, compassion and generosity. I am blessed to be surrounded by such love. You have all made me cry happy tears. I’m turning into a sook! Apologies for not being able to give a personal thank you but just now you have made my soul smile 😊

Here’s hoping that each day sees an improvement and I’ll soon be looking for mischief to get up to.

This is worse than chemo!

Sorry for delayed update. Thanks for all your lovely messages. I have been through the mill this time. 

As you know I was admitted to hospital a week ago with flu and an aggressive infection in my Hickman Line. Yesterday I was also told that I have a chest infection and possible lung GvHD. The microbiologist recommended toxic levels of antibiotics. 3000mgs of Septrin is a whacking big dose. 

After a couple of doses I started to feel really ropey. I ended up in a real state. I felt like I was on the verge of passing out all the time. I also felt like I was just about to throw up. My limbs became shaky. If I went to the loo I felt like my legs wouldn’t go in the direction I wanted to. They also felt really weak, like they were going to give way. My breathing was bad and I’d get really out of breath on very little exertion. I felt like I wasn’t properly in my body and my thoughts were very muddled. I wanted to ask my sister how my mum was but there was a bit of me that knew this was wrong. For those who don’t know, it was wrong because my mums been dead for 18mths. The final straw came when my hearing started to deteriorate again. When I came in I needed the volume at 20. That day it needed to be 45 and I still didn’t catch every word. I’ve already lost a substantial amount of hearing. The thought of losing more was too much to bear. 

That night I had a bit of a melt down and had a cry. I decided to stop the antibiotics. The doctors tried initially to change my mind but when they realised how bad the side effects were they agreed to swap antibiotics. 

It’s taken 2 days but I’m beginning to feel human again. I’m still very breathless on exertion. I also still feel very nauseous but not as bad as on the verge of being sick. My thoughts are better. I’m still losing my train of thought but definitely not as muddled. The tremor has lessened. So all in all lots of improvement. Still a way to go though. 

One of the worst things to have happened is that I have lost one of my wonderful hearing aids. I’m absolutely gutted. I had it in yesterday. I have to keep removing it to have my temperature taken. As far as I’m aware I had them both in when I was taken down for a CT scan. At 6pm when they next checked my ob’s, I put my hand up and realised the right one wasn’t there. I hadn’t realised because that ear hasn’t recovered from what the antibiotics did and so was already muffled. I searched my whole room. I even went down the bin. I’ve had nurses hunting and CT has also been searched. I feel awful. I’ve worn hearing aids for around 8 years and never even needed a repair or replacement. I treat them very carefully. I’ve not even accidentally got in the shower or bath with them as I hate not hearing. I got these ones last year and they are part of a clinical trial. They have given me a new lease of life because I can hear well enough again to participate in life. Not only can I hear, I can also sing again. My long suffering partner noticed that I’d stopped singing in the car. She always comments now on how lovely it is to hear me sing again. I really hope they will understand my predicament and be able to issue me with a new one. I don’t know whether to ask for prayers to St Anthony (patron saint of lost things) or St Jude (patron saint of lost causes). If you’re in Kings, please check the corridors on case it fell out while I was being wheeled to CT.

In order to make sure a thorough search was done I decided to strip and remake my own bed. It took me an hour as every time I walked from one side of the bed to the other I got out of breath and had to sit down. Sadly it’s nowhere to be seen. 

The nurse came to check my ob’s just as I finished doing the bed. My sats were only 89. No wonder I was breathless. After sitting still and doing some deep breathing they went up to 95! 100 is normal. 

So the latest news is mixed in nature but I’m just pleased to be able to interact with my surroundings again. 

The last 2 quotes I’ve written on my board have been “I am stronger than my challenges, my challenges will make me stronger” and “the body achieves what the mind believes” I shall attempt to practice what I preach. 

Lots of love to you and yours and gentle light in the darkness. 

Back in hospital again

Dear friends and family,

I’m sad to say that I’m back in hospital on Davidson Ward again. It’s becoming my home from home. This time I’m in Room 8 so a different picture to keep me company.

I had a really bad turn yesterday towards the end of my ECP treatment. I was shivering and shaking really violently and uncontrollably. After this my temp soared. My muscles were in tight spasm like pain for about 45 mins. It’s called a rigor. It’s horrible. I don’t want that too often. As a result the lovely nurses, who are not used to seeing me unwell at Guys, took some cultures from my Hickman Line as a precaution as well as a sample from a vein. They also took some viral swabs and said it was likely to be flu as there was so much about. They gave me IV paracetamol and fluids and made my long suffering partner come and get me. I said I was happy to go home and stay in bed with fluids and paracetamol.

That all changed with a phone call this afternoon. It seems my line is growing bugs. As it feeds into the top of my heart this is dangerous so I’ve had to come in for IV antibiotics. I may need the line removing depending on what the bug is. As this is the Ferrari of hickmans and is the only one of the 5 I’ve had that works well I’d like to keep it if I could.

In order to give you a window into my world and the stresses and strains that have to be dealt with unexpectedly I will chronicle events for you.

12pm. Nurse rings from ECP to check I’m ok.
2pm. Dermatology doctor rings from Guys to say microbiology have been in touch and initial results are showing a line infection but they are not sure what the bug is yet. She said she would phone my haematology team at Kings and get back to me.

2.45. Guys doctor rings back and says she has spoken to the on call haematology reg and they would like me to go to A&E and I may need the line taken out.

At this point I was still in bed so much started to get myself washed and dressed.

3.30. The consultant haematologist rang me and said she wanted me to get to the hospital ASAP and I may need the line removed but I definitely needed to come in for IV antibiotics.

4.30 arrived at A&E

4.45 was triaged by a nice nurse who was experienced enough to know some things and confident enough to admit to the things she didn’t know. She is a credit to her profession. She organised a side room with a door for me to protect my immunity.

5.15 Got placed in side room.

5.30 Nurse came in and asked questions and told me I needed some cultures taking and a cannula inserted. She placed the culture bottles and the cardboard tray containing the equipment for the cannula on the bin and said she or someone would be back soon as she wasn’t actually looking after me.

6.00 Doctor from A&E comes in and asks all the same questions and says he will pass it on to haematology.

6.15 Nurse 2 comes in and asks all the same questions and takes the same observations. Neither nurse 1 or nurse 2 left the paper thermometer in my mouth long enough so it didn’t register my temp accurately. I knew it would be done properly on the ward so I let it drop. Nurse 2 was a young man who was slightly arrogant. He said he would be able to cannulate me and he was good with small awkward veins. To give him his due he did get a cannula in. It won’t last long time know, but at least he did it. He also got blood all over my top which wasn’t so great but these things happen. An apology would have been nice though. Then he dropped the dressing he was going to use to hold the cannula in place on the floor. He picked it up and went to use it. Merry didn’t notice but my partner pulled him about it. He said “do you want me to get another one as it only dropped on the back” Oh dear. He has a bit to learn. At our request he did get a fresh dressing.

7.30 Nurse number 3 comes in. She didn’t ask all the same questions thank goodness she said the haematologist had been informed at 5pm. She said she would chase it up. She was empathetic and friendly and also said that the stuff on the bin shouldn’t be used and she would get fresh culture bottles.

8.00 Nurse number 4 comes in. Fortunately he didn’t ask all the same questions again. He had a really nice manner. He took the cultures from my line, did an ECG and recorded my ob’s accurately. He also was the only person who came in the room who noticed that my partner and daughter had no chairs to sit on. Tom was a credit to his profession and it was a pleasure to meet him.

8.15 A&E doctor came back and apologised it was all taking so long. He said he would chase up haematology again.

8.30 Haematology reg turns up and apologises for the delay. He shook hands with my family and me and introduced himself. He then explained the delay was due to waiting to get a patient home so I could have the room. He also said he was all set to whip my line out tonight but looking at me decided it could be left. They will see what the bugs are and if it’s not too serious it may be possible that the line can stay. Of course that is my preferred option because this line works so well. Also they will have to put one back and it’s a horrible procedure to go through. They have written me up for some heavy duty IV antibiotics and will take each day as it comes.

9.00 arrive on Davidson and get unpacked. It’s gonna be a long night.

I remembered my new Harry Potter blanket. Thank you Shirley Grout and Steve Douglas. I love it. Sadly I forgot my pillow. I’ll get that from home tomorrow. I did remember my chill pillows though Dawn Marsh. Gail Thompson Room 8 is the last room on the left in Davidson. It’s weird because everything is the other way round. Lol.

So what next. Well I’m waiting for the ward to start my antibiotics and put some fluids up. I’ve given the poor junior doctor my medication list. She was impressed that I knew all the dosages by heart. She said she would need to talk to someone about some of it because it was a bit beyond her. Lol. Poor thing. Again she was lovely and knows her limits.

As you can see the pace in a frustratingly slow and additional stresses are created by some of those who are meant to be helping. I still maintain there are far more good ones though and great dedicated people that really make a difference. The fact that I can access all this high end care so late on a Saturday night and it all be free is an incredible testament to Bevin and those that implemented the NHS all those years ago.

Let’s hope this is a short stay and that the stresses continue to be fewer than the good practice.

Thanks for your prayers and positive vibes. Hope to see you all soon. Xx

Struck down by flu and the hidden cost of cancer

I had my first ECP of this year today. I rang them before I set off to say I had a bit of a cold and cough. They checked I felt well enough to come and said they would put me in a side room. 

The drive was easy as the roads are still clear. It will be a different story next week when the schools are back. I managed to get a disabled bay to park in. This is always useful as I can stay as long as needed. If I have to park on the street I always have the anxiety that I have to be in and out in 3 hours. 

It was great to see the lovely nurses at ECP. There are some new members of the team. They seem lovely too. One of them previously worked on Davidson Ward at Kings, so I know her from there. 

My treatment was going really well and I was near the end of the cycle. All of a sudden my muscles started to really ache. It was like having cramp in my thighs and arms. It was really painful. Then I started to shiver and next came uncontrollable and violent shaking.  I had to press the buzzer for the nurse as I couldn’t really talk. 

When the staff came in they were really shocked at the state of me. I’m normally do smiley and upbeat and easy going. This time though I had gone deathly pale. My BP and pulse was up but my temp was only 37.5. They got a doctor and put me on oxygen and gave me some IV paracetamol. It took 30mins for the shaking to stop. After that they took my temp again and it was up to 38.9. 

I had cultures taken from my line as well as a peripheral sample. I also had viral swabs taken to confirm what’s going on. They suspect flu because of the high temp and rigor. 

I have never experienced anything like that before. It was awful and the pain for those 45 minutes was really intense. The hope is that I can keep my fluids up and take regular paracetamol to keep the temp down. I will be reviewed by the haematologist on Monday and a plan of action will be decided then depending on the results from today’s tests. In the meantime if I feel any worse then have to contact the on-call haematology reg. Fingers crossed that my non existent immune system somehow fights this off and I don’t need any further intervention. 

So this weekend it’s lots of crap TV in bed. Shame because I was meant to be singing at Rochester Cathedral tomorrow. I’m gutted that I won’t be with my friends and colleagues at this fairly local event. 

This week has been a bit pants in so many respects. I had an eye test and my prescription has changed. I need new glasses. The problem is I need 2 pairs as I also have to have sunglasses which I have to wear for 24 hours following ECP. I shelled out £700 for the glasses a year ago. I can’t afford to keep paying out like this. I have to have an eye test every year because of the GvHD and my mum had some problems too that means her kids all need monitoring. I also only have one eye that works and with my eyes being so dry, it’s likely that things will change more often. 

The helpful receptionist at the opticians looked things up for me and said I should qualify for a grant from one of the big cancer charities. I rang the charity and gave over my financial info. They rang me back just before I set off for treatment today and told me I didn’t qualify with them for a grant because of my pension. 

So many people don’t see the hidden cost of cancer. I have to wear more clothes than anyone else to keep warm. When my weight went up with steroids I needed to buy more clothes. Now I have the opposite problem. I need the heating on warmer and for longer because of my inability to keep warm. I spend a fortune on fuel for the car as public transport means lots of germs and I’m immunocompromised. I’ve recently had to buy new stacking units for all my medication as I’ve grown out of the drawer I was using. I have to buy soft top socks to stop them digging in due to fluid retention. These of course are much more expensive than ordinary socks. The list is endless really. I’m not accustomed to having to give my financial info over and having to ask for help. Then to find out that the small amount I have coming in takes me over the threshold makes me realise how other people must really need it. 

The cancer charity did sign post me to another site that has lists of grant givers and their priorities. She felt I would find someone willing to help. The problem is though, all that takes time and energy. Just now I don’t have that much energy and I have a flu bug to see off. 

Fingers crossed I get rid of this bug soon and can get back to making mischief. Send me some prayers, if you’re the praying type, or positive vibes and know that while you are thinking of me, I am thinking of you.