World Blood Cancer 2024

 

Today is World Blood Cancer Day so an appropriate day for a blog from me. 

The four big cancers; breast, lung, bowel and prostate are all well advertised and most people could tell you a main symptom from these cancers. For example the following are all mentioned in tv ads; lumps, a persistent cough for more than three weeks, blood in your poo and frequency or trouble peeing. There are of course many more. 

Blood cancer can be insidious in the way it creeps up on you. Would you know what the main symptoms of blood cancer are?

Night sweats

Fatigue

Breathlessness

Bruising

Repeat infections

Unexplained weight loss 

Lumps or swellings

We can rationalise these symptoms as being stressed, having a virus, being run down, menopause and a whole host of other things. GPs can miss these symptoms sometimes because they are so non specific. When you think about it, your bone marrow is the building block from which everything else flows from. Blood goes to every inch of our body to keep it going. So when the marrow fails and the blood going round is a bit off or a lot off the symptoms are going to be broad ranging. A simple full blood count blood test will yield vital information. If you have any of the above symptoms please ask for this simple test. 

When it happened to me I was a fit young football playing woman with a young family and a responsible job. I noticed I wasn’t running as fast down the wing as I used to. The defenders were catching me more often. I’d be breathless and exhausted all the time. I could also bruise more easily. I just didn’t feel right. I went to my GP and she asked me to have a blood test. 

The next day I was sitting at my desk in a corporate housing office when the GP rang. She questioned how much I’d been drinking and then asked me if I was lactating. I was shocked. For those unfamiliar with the word it’s when you produce breast milk following a birth. I laughed and said did she have the right patient. She said yes and I said “but I haven’t had a baby” She told me that my prolactin was very high and my red cells were very large. She asked me to repeat the blood test. It yielded the same result. Next she sent me to an endocrinologist and he prodded and poked me for a couple of years. Lots of my endocrine results were slightly off. He sent me for a brain scan thinking I had a pituitary tumour. That all proved negative. Eventually he admitted defeat but said the one consistent result was the large misshaped red cells and a low grade anaemia. He then packed me off to a haematologist. 

The haematologist scratched his head and after a while said it was a possible MDS (Myelo Dysplastic Syndrome) diagnosis. Eventually he sent me to the specialist team at Kings who are a centre of excellence for this rare blood cancer and they gave me a definitive diagnosis of MDS. It took years to get to this definite diagnosis. I always say I’ve been dealing with all this for 24 years as it was in the year 2000 that Kings told me I had MDS. The truth is it was rumbling away a lot longer. I remember in my early and mid twenties being asked by the GP if I was drinking too much as my red cells were large and misshapen. This can happen with too much alcohol. However I am a disappointment to the alcoholics in the family. One and I’m anybodies, two and I’m everybody’s. Lol. I just can’t take it. It turns out that macrocytosis is also a possible sign of blood cancer. 

When I was diagnosed there was scanty resources available on the internet. It was fairly depressing and scary. I learned that people on average live 2-5 years with MDS. 

The following week after my confirmed diagnosis, I went off to my selection process to see if I’d be a suitable candidate for training to be a priest. It was a four day residential interview putting through your paces. There were IQ and EQ tests. There were observational activities where you’d have to chair a meeting or make a presentations. There were individual interviews plus panel interviews. It was all very intense. Of course in between some of these activities I would wander around the ground wondering if the 2-5 years prognosis would apply to me. 

I was amazed to get through the selection process and I was recommended for training. I’d been arguing with God for twenty years that She must be joking. When I first felt a sense of vocation, women couldn’t become priests. Also there certainly weren’t any working class, lesbian street urchins who didn’t do books! Lol. I left home and school so early I never developed academic skills. 

Being the feisty woman I am on the inside I decided to take the challenge of training. The process is a long one for priests and deacons. There’s a couple of years of discernment before you even get to the selection process. The theological academic training course is either two or three years.  As I don’t even have an O level to my name I had to do the three years. Also I chose to do the training part time so I could continue to raise my young family and work to support them. Once you pass and complete these academic rigours, you then have a further three or four years of training where you learn your trade as a curate. After that you may go into parish ministry or some kind of chaplaincy. As you can see it’s a big commitment. So it was my way of saying “up yours” to the MDS and the implications. 

I worked full time as a priest all the way from the end of my theological training in 2003 to 2016 when I had my transplant. There were numerous hospital admissions over those years and some really near misses with sepsis on several occasions.  In 2016 it was decided I need a stem cell transplant after a particularly bad bout of sepsis. My sister came forward for testing and proved to be a match and my life was saved by the brutal process of the transplant. I still live with the effects as I now have many chronic comorbidities but I’m still here and still breathing. The cancer is in remission and I’m learning to live with all the effects. 

As you can see I had a good quality of life with some serious dips all the way till 2016. That’s a lot better than the 2-5 years I saw on the internet. And now I can add another eight years to that. To those of you who are newly diagnosed remember that what lays before you is nothing compared to what is inside you. If I can get through all this, so can you. There is much better quality information on all the blood cancer charity webpages. Do check out the facts from the experts and patients and use these reliable sources rather than Dr Google. There are also some fantastic patient advocacy and support groups. Please use them and stand on the shoulders of the giants that have trodden this path ahead of you. 

Today I may be a bit broken and battered but I’m still able to give and receive love and receive and reflect light. I believe the more light you let in the brighter your world will be. For all of those struggling, I’m holding you in the light. 

May the 4th be with you

I'm sitting here with my laptop on, feet up and the TV on giving me the latest mayoral and local election results. I'm feeling quite content with the results so far and hope that all political parties truly learn from what the people are saying. Lets hope the same happens when the general election comes and that it's called soon. We need to face our problems like adults and start sorting this mess out. 

Regular readers will know I picked up covid for the first time in July. I've been below par ever since. I've had a dreadful cough. it's not so bad now but it's still very present especially in the morning. On top of this I've developed chronic sinusitis. It's horrible. Last month I had an endoscope shoved up my nose to confirm the chronic sinus problem. The consultant was a gentle soul. He told me to use a decongestant nasal spray for 10 days as well as regular wash outs. It didn't work and I ended up with a few nose bleeds to make matters worse. When my sinuses are full it puts pressure on my face and gives me a headache. Also on the side that's more effected, the darkness under my eye is worse, so much so I've been asked a couple of times if I have a black eye. I don't know if it's connected. I go back to him in August to work out what next. I hope he can do something.

On top of all this, every now and again, I feel dizzy and very nauseous. My appetite is reduced and I've had a gippy tummy. Last night my lovely little sister invited me and Maggie for dinner. She knew I hadn't been eating so well, so she did a jacket spud with some picky bits. She's very thoughtful like that. I didn't manage to eat what was on my plate. About 30 mins after finishing eating. I'd been sitting very relaxed and chatting, when all of a sudden I didn't know if I was going to pass out or be sick. Gail is sick phobic so I knew I had to get out of the way! I managed to stagger out of the room and get to the bathroom. I was sat on the side of the bath but then realised I may pass out so better to get on the floor. Sweat was pouring off me and my breathing was really ragged. My skin felt prickly and clammy. If it's just because I'm going to be sick I don't have all the other symptoms and I get sick really quickly. It took a while for the sick to come up and a while before I felt able to stand again. Normally being sick doesn't faze me at all. I'm so used to it and generally very quiet about it. This time I felt slightly anxious as it impacts on another weird symptom. It's horrible at the time but wears off pretty quickly.

The first time I experienced this weird symptom I mentioned earlier was when I was in Ireland, just after being diagnosed with covid. I was sat at the table eating a meal with my family, including two grandchildren. All of a sudden, I started to cough. It was like food had gone down the wrong hole. As I struggled to catch my breath, it was like my windpipe totally collapsed. I couldn't breathe in or out and as I continued to struggle I was making this awful high pitched noise as I tried to get air in. My partner was frantically slapping me on the back. I remembered that sitting and leaning forward is the best position to open your chest so I sat down. After what seemed like an age but was probably not much more that a minute it suddenly opened up and I could breathe again. I made some quip to the grandchildren about 'well that was dramatic"and tried to gently eat the rest of my food. Inside I was trembling. I am a calm person but that stressed me. 

It happened again on another occasion when I was eating a meal at home. Exactly the same. It's like my windpipe just shuts and I just can't breathe in or out. This time it was only me and Maggie. I have to force myself to be calm which is not easy. I mentioned it to a doctor who had no idea but said to keep an eye. The third time it happened, I was having a meal with my brother and sister-in-law. The offending bit of food was a piece of raw broccoli. It only touched the back of my throat, I didn't even swallow.

This time I sent an email to one of my consultants. He said it's not my windpipe collapsing but a spasm and to go to A&E if I'm worried. Not particularly helpful. I wouldn't go to A&E after its happened because I'm fine then and I do't want to waste precious NHS resources. The last time it happened it was not around food at all. I was getting ready for bed. Maggie was out. I just started to choke for no reason. and my airway slammed shut. I sat on the bed and lent over my side rail. It seemed to go on and on. All I could hear was this high pitched noise and I could feel the panic rising. I was convinced Maggie would come home to a corpse! It was a horrible experience and was by far the worst one. As a result I reminded Maggie how to give CPR and what to do in that scenario. Not a nice thing to have to do but I was convinced it was getting worse.

This has left me with an anxiety I've never had before. I'm much more aware of how I eat. When I got sick last night I began to feel the vomit catching my throat. As I was throwing up I was thinking "Oh my God. What if it happens now?" Fortunately it didn't. I was mightily relieved.

Going back full circle, when I met the lovely ENT consultant I asked him if he knew about throats as well as noses. He asked me why and I explained. He asked me if I have reflux, which I do. He explained he thinks it's a spasm that cut's the breathing off for a while but then is ok. He said worse case scenario you pass out and your breathing comes back to normal. It can often be triggered by a respiratory infection. Well I've had one respiratory problem or another since July finally having a negative test at the beginning of March. 

The ongoing and relentless nature of these late effects from my cancer treatment, at times leaves me really debilitated. I refuse to lose spirit though. On this special Star Wars Day I want to encourage you to feel the force within and around you. You are all so much stronger than you think. Always remember."This too shall pass!"

An adventurous spirit

I remember when I was young asking my nan what it feels like to be old. She explained to me that you still feel the same but you do things more slowly. In my youthfulness I did not understand how an old person could still feel like a young person inside. Now that I’m a grandmother of 4 who are 20, 18,16,& 13 I understand her words. 

I still feel the impish and feisty street urchin inside. My 24 year battle with ill health has taught me to live differently but inside I still have that adventurous spirit. As a younger person and a fit adult I was always tireless. I suppose you could say I was a bit of an adrenaline junky. 

These days of brittle bones and skin that rips with the slightest knock I need to be more cautious. I’ve given up my motorbiking but I still crave that feeling of being free when you are riding around and cutting through the air with the wind in your face. There’s no better feeling. I’ve suffered from chronic nausea for many years. Interestingly I never felt it on the bike with all that air in my face. 

These days I need to be more clever about possible adventures. One of the things I’m really up for doing is the longest and fastest zip wire experience. It’s located in Wales. One day I’ll make it happen. Today I’ve been looking up quad bike hire or trike hire. Not been too successful so far but where there’s a will there’s a way. What suggestions would you have for me? I’ll give most things a go at least once. 

Enjoy the pictures of some of my adventures. 

Health wise things are slow to improve. The cough I had is much better but still present. The sinusitis is much better but still there and still producing thick green snot at times. Even I’m shocked at how long this is all taking to clear up. This all started with me getting Covid for the first time last July. I then tested positive till Nov. I then had two weeks grace and got Covid again. I also had flu and rhinovirus. One or a combination of them has been with me all the way till the beginning of March. 

I have an ENT appointment next week to talk about the sinuses. Then next month I have a respiratory medicine appointment. These of course are alongside my haematology appointments. Hopefully they will give me some pointers how to shake the last effects of these viruses out of my system. 

On top of all this my kitchen is still not finished. This is due to damage caused by a leak which is the 2nd time in two years. The kitchen furniture is coming back in a few days and then it should be another 2 or 3 days to finish it all off. We’ve been taking refuge at my cousins in Nottingham but need to be back in London Friday. I guess we will live on take aways for a few days. 

When we turn on the news there seems to be so much horror going on around us. My final thought for this blog is “don’t curse the darkness, light a candle instead.” 

International Women’s Day

Hello Folks. Seeing as it’s International Women’s Day I thought I’d use this time of my 2nd hospital visit of the week to write a blog. It’s not been easy summoning the strength recently so I’m sorry I missed Rare Diseases Day. 

My latest hospital admission where I’d been told I would probably just need 48 hours of IV antibiotics turned into 8 days. I think they love me so much they just like to keep me once they have their hooks in me. Lol! 

The biggest challenge

has been keeping a working cannula going. Every time I needed a new one it took several attempts. On one occasion they sent me to interventional radiology for a cannula to go in under ultra sound guidance. He managed to get it in first time. By the time I got back to the ward it had already blown. (Stopped working) The ward then bleeped the on all doctor. As it was in the middle of the doctors strike, it was a consultant that I knew who showed up. That’s not something that happens very often! To her credit, she too got it in first time. Then when the drip was connected the fluids started leaking all around the dressing and soaked into my lap. They stopped the drip, then blood started dripping and pooling in some paper towels I was holding underneath it.  So that one had to come out and the doctor called again. You can see this saga in pictorial form attached to this blog. The same consultant came back and hey presto 3rd time lucky we now had a working cannula. Because this had delayed the antibiotics being given to me I had to have some at 2am. Oh well you don’t come into hospital to sleep. Obs ie blood pressure, O2 sats and temperature are all done at 10pm, 2am, and 6am as well as throughout the day. Bloods get taken around 7am and breakfast turns up around 8am. It’s awful. You need to come home to recover. Lol. 

On one of the days I was told I needed to have a CT scan  I then got a notification on my app to tell me my scan was booked for 6.30pm. No one turned up so I checked with the nurse and she tried to ring CT but got no reply. I got into bed and was woken just before midnight to tell me the porter was here to take me to CT. I was rather bleary eyed but chucked on my teddy bear hoody and was whisked through the empty but very cold corridors of the hospital. I got back into bed shortly after 1am. Then was woken at 2am as per above. You really do need to be resilient to cope with hospital stays. 

I’ve had so many pricks in my life, steady now. As a haematology patient with 24 years of coming to Kings my veins are tiny, fragile and scarred. As an inpatient I needed blood tests every day. This got to the point where it would take 4 separate attempts to get all the blood needed for testing. When you have neutropenic sepsis your blood pressure can be a bit low. Mine often is and this doesn’t help either. I’ve learned all the trick from keeping warm to drinking extra water, to holding my hands under the warm tap. Despite all this it’s hard. The phlebotomist on one occasion was a bit stressed and went too quickly for someone with veins like me. The resulting bruise was horrendous and shows how vitally important it is to take your time with difficult patients. The next cannula was put in by a special haematology team under ultrasound guidance. Two of the team had been nurses on one of the wards I had a long admission on. It was so lovely to see them doing so well. They got it in first time and it lasted till o got out. Well done “team Haem” 

Luckily I don’t mind needles. It took 3 attempts today to get blood and these are very skilled nurses who are struggling. When I’m more my old self it’s not so bad. Often there is a week between pricks, so time to heal. Cannulas and daily blood tests wreck my blood vessels for a while. Fingers crossed they get good again soon. 

One of the other areas that could do with being brought into the 21st century is pharmacy. On one occasion recently it took me over 2 weeks and a plea on X (Twitter) to get the drugs finally dispensed and delivered. By that time I had run out of some of the medications. I understand that these are hospital only medicines but I’ve been taking them for years. Surely they should just automatically get ordered and sent out. I spoke to a senior pharmacist about it all and she said she old raise an incident report. 

Then we get to the debacle on the day I was discharged. It was decided I needed to have my IVIG infusion before I went home. I was told I could go home in the morning and just needed the infusion first. Then the black hole opened up and swallowed all normal protocols. By afternoon I’d heard nothing so I reached out to the person who contacted me after the delayed prescription a few weeks ago. She said to contact the on call pharmacy team. The nurse had been trying to do this unsuccessfully. It eventually came up very late and I got home around midnight. I came home with no medication from the hospital though, as it still hadn’t arrived on the ward and I wasn’t prepared to wait any longer. I said I had enough at home till Monday and as they wanted me back for a check that day that I would collect them then. The nurse told me to collect them from the ward. 

On Monday I went for my review in the Haematology Assessment Unit as my last swab had still been positive for rhinovirus. I told the lovely nurse looking after me that when she had taken the blood I would go to Waddington Ward to pick up my medications. She didn’t want me walking all that way so went there herself. She came back with no medication. One of the nurses from the ward was looking into it. The HAU nurse tried to ring pharmacy but it kept ringing out and she was on her own with all the HAU patients. In frustration I emailed the pharmacy contact who I discovered was the Deputy Chief Pharmacist. By then I’d finished in HAU and had to go to out patients pharmacy to collect me meds. Normally I avoid pharmacy like the plague. My team discourage me going because of my extremely low immune system. There are very few places to sit and it’s impossible to be socially distanced. I gave my details and the woman told me I was due one item and that was my GCSF injections. I sighed and said no there are another two items. Nabilone is a controlled drug and antibiotics to carry on treating the neutropenic sepsis. She eventually managed to find that there should be 3 items. She gave me a ticket and told me the wait was around 30 mins. 

As I had time to kill and had noticed a homeless person sitting on the pavement by pharmacy, I decided to go and get him a hot drink and something to eat. As I was wandering back to him I received a phone call from the haematology specialist pharmacist. She was most apologetic and said she would set up an incident report so the situation got looked into. I explained they had done that 2 weeks before about another problem with missing medication and I had heard nothing. This time I said to the pharmacist that I’d happily be involved in any staff discussions to give a patient perspective and I hoped we could all learn from the scenario. She said I was free to complain. What I’d really like is people to come willingly to an incident meeting where the discussion and emphasis isn’t about blame but learning so it doesn’t happen again. I find that complaints push people into defensiveness. They have their place but trying to resolve informally should be tried first. Any way I was standing outside unable to walk because of holding my phone and the goodies for the homeless man. I couldn’t then hold my walking stick. Lol. The pharmacist said that the original request had gone into some weird and whacky work steam and she had never seen that before. She said she had intervened and all the meds were now in the inpatient pharmacy. I asked where it was and she explained it would have to be a member of staff who collected it. I could feel this inner groan surfacing. I said did I also have to collect from outpatients too? She said I had it all in the inpatients order so no need to walk back down there. She asked me to go back to HAU and she would speak to the nurse there and get her to collect them. It’s frustrating but that’s what I had to do. 

I still had the homeless man’s drink and food. I walked back down the road and by the time I did that the man had gone. Oh my days. Talk about sod’s law. 

I then trundled back to HAU. I walk with a stick and have just had an 8 day stint in hospital. I’m more frail than usual so all this walking about wasn’t so good for me. My poor HAU nurse who was covering the place alone had to leave where she was to get the drugs. She told me to meet her outside the HOP area and she’d give me my carrier bag there. I got home after 7pm having been at the hospital since 10.45am. Again another example of how resilient you have to be when dealing with all this hospital stuff. 

As today is International Women’s Day I’d like to dedicate this blog to the woman who is my rock and life long partner and our beautiful daughter. I’ve put them all through so much worry and anxiety o er the years. Maggie and Annie are just simply wonderful women and I’m so lucky to have them in my life. I’d also like to shout out all the women in the NHS who work tirelessly in a broken system to keep broken people like me alive. Not all superhero’s wear capes. Some wear scrubs! Thanks for saving my life once again. Xx