New Year update 2023

 

Me at Winter Solstice 2022

I can’t believe that my last update was July 2022. It’s New Year’s Day and so today seemed like as good a time as any to share with you where I’m at with this disease.

I was taking Trametinib when I last updated you, which I continued for a short while after until September. The side effects were getting too much with the burning hand foot syndrome, fatigue, nausea, insanely itching dry skin, dry eyes, weight gain, ocular migraines, blurred vision, dizziness and splitting skin on fingers and feet. These side effects were constant and not intermittent so the option of continuing to take Trametinib became untenable. In addition to this, my ca-125 ovarian cancer marker was starting to rise. It never actually decreased to within normal limits even whilst taking Trametinib, but some kind of stability was what we were aiming for as opposed to cure or remission.

I stopped this treatment shortly before we went away to East Anglia but the side effects didn’t subside very quickly and so we went away whilst I was still feeling very poorly. The dizziness was a real issue at that point and made me very unsteady on my feet and it felt rather like motion sickness with the nausea etc. A mercy plea from my GP for Cyclizine, a few days before we travelled helped to settle the side effects enough for me to travel thankfully. It was the first time we had been away in a few years, so I had to dig deep to go when I felt extremely vulnerable traveling so far away from home. We made the most of our time there, but the way I was feeling impacted on our plans quite a bit. Unless you’ve been in a situation like this, it is impossible to know how it feels. What makes it worse for me is that I have had a harrowing experience of being taken to hospital when away from home following a haemorrhage, and this experience has stayed with me to the point that I really am very wary of going away anywhere in case something happens like that again.

Back to now though! The plan was to have a break from Trametinib and to maybe restart it if needed. I was monitored every three weeks by my Oncologist and at first, I was fairly stable as the side effects of the treatment wore off. However, by November my CA-125 had suddenly doubled to 142 and I was experiencing pain under the right side of my ribs and pain in the supra-pubic area. A CT scan revealed that some abdominal disease was stable, some was reduced in size, and some had increased. The biggest worry was that I now have multiple Liver Metastases showing up of which one has doubled in size and so this is what is causing the pain under the right side of my ribs. With that in mind, and with it now being so close to Christmas, I needed to have some sort of plan of action. My ca-125 was by this time 180 so we decided for me to have a course of steroids to help reduce the liver pain and to restart the Exemestane which is a hormone blocker; my disease is oestrogen receptive and so it uses oestrogen to grow. Hence using Exemestane to block the oestrogen that my body was still making. That is the current situation as I write this update today.

There are various possibilities now that we are into the new year but none of them are very appealing. I can apply to go into a couple of clinical trials, but they are in London which is not easy for me to do without it taking over my life. I also would need a good deal of support to do this, but my family isn’t local, and Simon just couldn’t constantly take so much time off work to support me. I could have surgery, but I would want this to take place in London and not where I live in Southampton. In London it is possible to have less invasive surgery with robotic assistance but in Southampton this is not available. Again, I would need support to do this if I went to London and so we run into the same issues as entering a Clinical Trial. Another option is to try an oral chemotherapy called Cyclophosphamide which is not used routinely anymore as newer drugs are available. It may just help to stabilise my disease but there are no guarantees with this except that I will experience side effects as usual.

As we enter a new year, these are my options! They are not great are they and so forgive me if I am not overly gushing about wishing everyone a Happy New Year. For me and those in a similar situation, this is the reality for us. Already our calendars are full of medical appointments, tests and uncertainty; pretty much more of the same for us only a different year! We have lost so many women over the last year who became friends through this disease and so those of us who are left have mixed feelings right now. We feel the sadness of our grief, we feel the desperation of those who are currently dying, we feel the gratitude of still being here but at the same time the fear that 2023 could be our last year on Earth. Believe me when I tell you that behind the positive smiles of those living with Cancer, there is always a myriad of emotions behind them. When you are ‘lucky’ enough to live with the disease for as long as I have, it becomes very draining on our emotional reserves, and we get to the point where we have nothing else to give. Only those living with this disease truly know how it is, and so I am extremely fortunate to have women who I can call on when I really need to. We have each other’s backs but in having these close relationships with peers, we experience the lows of their situations, and the grief so profoundly if they die with the disease before we do. At times it’s very hard to find the balance in life which is why I am looking for ways of living outside the world of cancer for periods of time. I have been involved with supporting others with this disease for a very long time now, plus I have my Podcast which gives women with Ovarian Cancer a voice but it is ALL cancer related and it can feel completely overwhelming at times. If I don’t find ways of replenishing and restoring my energy levels, I won’t be able to continue the valuable role that I have in the cancer community. What I have decided to do is place some of my focus on the healing value of nature which I find is so life affirming. It will help me find purpose again and maybe help others to see ways of coping that they might not have related to before.

I will try to update you more frequently than I have been doing. I have had such a mental block about writing this update because it really isn’t a very positive blog for me to write or for you to read. But, if I am not honest and raw in sharing the situation that I am in, then there really isn’t any point in continuing these blogs. A fair few people say how much they admire me for the way that I cope with cancer and stay so positive, but the truth is that I am not always like that. I have some very deep depressive episodes and I have found life to be extremely overwhelming at times. 2022 has been the worst year for me and my mental health. It has also impacted significantly on my personal relationships too which left me feeling very empty and asking “what is the point in carrying on”. I want to try and share those times with you a little more when life feels like that because I do not want others to feel that they are in some way failing because they are not coping as well as I do. Much depends on how I am and how much energy I have to spend on writing but my hope is that I can still find ways around this even if it means shorter blogs.

That is my update for now dear friends. I will let you know how things are going over the next few months. I have blood tests next week followed by an Oncology appointment the week after so I suppose more decisions will be made then. Until next time, take good care.

 

 

 

 

If life was a merry-go-round!

Despite the good news in my last post, it doesn’t change the day to day difficulties of living with cancer and having cancer treatment. There really are massive highs and massive lows for us.

I managed to take my belongings to the charity shop today, who were very lovely and very grateful. It wasn’t an easy task for a variety of reasons!
The rash on my face is pretty bad and it’s getting a bit sore in places. I suppose it’ll be back to the Doxycycline for a while for me.

I had to pop into the village for some fruit whilst I was as out and unlike me, I felt very vulnerable all of a sudden. It felt like all eyes were on me .. of course it was probably maybe one or two people who noticed the rash (it is very noticeable) but I felt like everyone was looking at me. I wanted to escape the shop asap but managed to stay and pay for the strawberries.

As soon as I got into the car, the tears came and now they won’t stop. I’m feeling very tired today after very little sleep last night due to the heat and I just have no confidence at the moment. This too will pass but with so much going on and so much to do, I don’t have the space to get my head into a better mindset. If life was a merry go round, I’d like to get off for a while!

Bit by bit I feel eroded and diminished. My marriage, my friendships, and my life feels like it’s fading because I can’t be who I used to be in order to maintain them all. The gap is widening evermore as everyone moves forward with their lives whilst mine slowly withdraws. This is the reality of cancer and on some days it’s more pronounced than others. I’m not the only one… my friends with this disease and those friends with other chronic diseases feel this gap. What I want to say to you is this…. You’re not alone, I see you!

Hooray for good news!

The rash on 14th June 2022

and today 2nd July 2022

I had my Oncology appointment on Tuesday this week and the news was surprisingly good. My CA125 (Ovarian Cancer marker) was down from 154.8 to 90.6 over the period of 6 weeks. Even my Oncologist was surprised. I certainly am!

What this tells us is that Trametinib is working well. Trametinib targets certain tumour gene mutations which we have no idea if I have because in the UK we do not carry out genomic testing. Having Trametinib without knowing if I had the associated gene mutation was a stab in the dark and potluck as to whether it worked. However, from my very quick and positive response to it, we can assume that my cancer probably does have that gene mutation.

The side effects have been awful over the last 6 weeks but at least this time round I was prepared for them and didn’t end up in hospital again. You may be aware that I was taking  Trametinib 2mg at the end of last year and had to stop due to the side effects. However, after a break in treatment I restarted it in the absence of not much else being available for me, so it’s been a very stressful time over the last 6 weeks. I did restart on half the dose this time ie 1mg but once I had managed with this for a couple of weeks I increased to 1.5mg. The skin issues started when I was taking 1mg but on 1.5mg the rash became quite bad on my face. I managed to get treatment for this reasonably quickly and the rash responded so it’s much better now. The other side effects are hair loss (my hair is VERY thin now), sluggish bowel, extremely dry skin all over my body, skin cracks on my fingertips and feet, dry mouth, headaches, loud tinnitus, nausea, and abdominal pain. I am managing all these side effects for now so it’s a case of carrying on until either the Trametinib stops working or the toxicities take their toll on my vital organs.

This part of my Blog is an important message to those who are planning to take Trametinib!

I discussed with my Oncologist that since we know the awful side effects of Trametinib we ought to be having prophylactic medications routinely in just the same way as conventional chemotherapy. I was given a big bag of medicines when having chemo which included steroids, anti-sickness, anti-inflammatory and anti-diarrhoea meds of which I didn’t need most of what I was given. With Trametinib I was given nothing! My Oncologist is extremely dedicated to her work and has agreed to take the idea to the chief pharmacist to request this is written into the protocol for prescribing Trametinib. In my head it makes perfect sense to pre-empt the toxic effects which pretty much affects anyone taking this treatment because it’s the difference between a patient continuing the treatment or not. I will follow this up to make sure something is done so that future patients will benefit. For those who would like to do the same in your geographical area I suggested the following to my Oncologist as a protocol:

Doxycycline 100mg daily (supply 7 days but will need longer course for more serious rash),

Hydrocortisone cream 1% (15g tube). Apply sparingly to the affected area with the rash twice daily after washing. 

Fucibet cream (Fusidic acid/ Betamethasone) which is an anti-bacterial and steroid combination. Stop Hydrocortisone cream whilst using Fucibet. Use when a pustular rash appears. Apply only to the area affected twice daily after washing. (An anti-bacterial cream on its own alongside Hydrocortisone would work just as well).

I also suggested that advice is given regarding taking laxatives because although many experience diarrhoea as a side effect of Trametinib, I and others I know experienced dreadful constipation resulting in a hospital admission.

That’s my update for today which is pretty good and a great reward for perseverence. What this news has given me is the sheer wonderful luxury of time! I can breathe a little easier because the disease will be controlled enough, at least for now, for me to have fewer symptoms and less pain. I plan to hold close all that I love in life even more than I already do. We all think we still have time, even those of us living with a terminal disease… and even me who is such a strong believer in planning ahead in respect of end of life wishes. So, on top of enjoying life, I am reminded that I have the gift of time now to sort the finite details of my will, renew my end of life preferences, sort out the rubbish from my life possessions and cherish all that’s left. I am going to use this time wisely but I’ll write more about that in another Blog. For now it’s about balance, I am going to thoroughly enjoy the time and reasonable health to live and love life and simultaneously put my affairs in order. See you all next time!

Well, hello Liver Mets!

Simon and me recently in London before a Whitesnake concert.

It’s been a while dear friends! I promise to update you again soon and not leave it so long. Maybe I should write shorter, more frequent Blogs as I know many of you like to read what is happening, how I am coping, and I know you look to me for tips on how to live with your own cancer. I promise that I will be a bit more forthcoming about how I get through the dark times, because it’s those times that are so much more difficult to navigate. It’s easier to write about good times isn’t it? 

In my Blog from September last year, I had been taking Trametinib for 4 weeks. I continued to take it whilst reducing the dose but by December my CA125 was rising when taking Trametinib 0.5mg so it was clearly no longer a therapeutic dose. In conjunction with this I was experiencing issues with my eyes such as blurred vision, flashing lights in the dark and I was having daily headaches which we feared may be a serious side effect of Trametinib. After discussion with my Oncologist, we decided that I would stop treatment and have an assessment at the local Eye Hospital which took place in January. Thanks to Kate for taking me and then even more gratitude that she came back for me hee-hee. The eye assessment concluded Ocular migraines but thankfully no retinal damage from Trametinib. I do have residual damage though from previous chemotherapy ie cataracts and floaters but nothing new or life changing.

During a break in treatment over the last 5 months, we decided to watch and wait for a while longer until something more significant happened. Over that time, I began to have more symptoms in addition to a constantly rising CA125. With my rare type of Ovarian Cancer, we really didn’t want to use up what few options we have left and chose to keep those treatment options ‘up our sleeves’ until I truly need them. This approach isn’t for everybody as some people do want to treat everything quickly, but for me these treatments all have horrible side effects, and I personally don’t want to live my life feeling constantly ill from cancer treatment. By choosing to wait and not rush in with treatment does not affect my overall survival, I should add. However, it’s all a matter of balance in weighing up quality of life and what symptoms can be lived whilst leading a fairly normal life, against more niggling symptoms that can’t be relieved with medication and affect quality of life more significantly.

Once my symptoms began to cause more of an issue, I requested a CT scan which confirmed the reason for my increased pain, fatigue, bloating and general malaise. The disease was now increased in size and number in my abdomen, there are new tumours throughout, I have another node in my chest and more worryingly, I now have Liver Metastases. 

I’m taking Trametinib again but at half the recommended dose ie 1mg. I may have to increase this if I continue to have symptoms and my CA125 carries on rising. Of course, with an increase of Trametinib will come an increase in side effects so it really is a case of slowly does it and responding to whatever happens. After a week of taking Trametinib, my hair is already thinning, and my face rash is starting up so by increasing the dose there will be more side effects. If the Trametinib becomes intolerable and I have to stop it, there are not few options available. I don’t live near a big Cancer centre with clinical trials available so if I did want to take advantage of a trial I would have to keep traveling to London. I am reluctant to do that because of the risk of contracting covid (which fills me with dread) but also because it really is even more exhausting to travel to the city whilst having cancer treatment. This is all constantly going around in my head, and I feel completely overwhelmed with it. I just wish someone would make decisions for me and let my brain have a rest, but cancer doesn’t allow for that. These days, patients have to do their research constantly and advocate for themselves all the time which to be quite frank, has become an issue for me. I am weary, I am exhausted, and I am fragile emotionally after living with this cancer for 8 years because there is only so much resilience in this body at the moment! 

We are still adjusting to this news and our new normal again. We do have some wonderful support from friends, but there isn’t too much that they can do from a practical point of view right now. For me, what is hard is the sheer loneliness and isolation I feel. I spend many hours on my own alone with my thoughts, and my energy levels are not great so it’s more difficult to go out for walks anywhere. I feel vulnerable if I go out for walks in the forest in case I can’t walk back to the car and get home again. The fatigue is like someone suddenly pulling the plug on me and it’s not tiredness that is relieved by sleep. If I do end up over exerting myself, it takes days to recover. 

Do you know what….. life is bloody miserable at the moment. I find myself having really dark times and plummeting into an existential crisis that nobody can understand because I can’t or won’t verbalise it. Instead, I carry on people pleasing and prefer to appear to be as resilient and grounded as ever, because it’s just easier that way. I find myself explaining the new changes in a very guarded and far from detailed way to protect the people I love: favouring instead an upbeat voice with my style of humour thrown in. It isn’t what’s in my head and heart though! Inside I am that exhausted, frightened patient that I know all too well from my nursing days, who fears that in showing my true feelings I might somehow lose my composure and control. Thank goodness for my cancer peer group who do get what this is like, because they are there themselves.

Having Liver Metastases is a serious change in circumstance but at the moment I have only a few symptoms, plus my liver function is still within the normal limits. The main issue I have is pain which is a bloomin’ awful nagging ache in my back just below my ribs. Sometimes it causes a tight band around me, and I find it hard to take a deep breath in. If you have ever seen an animal liver (when you’ve eaten liver and onions), the human liver is just the same. The liver has a thick shiny outer layer known as the liver capsule that does not stretch and it’s very hard to cut through. A liver metastasis causes a swelling that puts pressure on that outer capsule because it won’t stretch and that is what causes the pain. The liver is a major organ, and it has 10 jobs to do in the body so there is scope for so many issues through having Liver mets. Let’s hope these issues don’t create problems for a good while yet though but I know eventually they will..

I continue to take joy from the small moments in life especially in nature, but that’s been quite challenging over the last few weeks both physically and emotionally. Until I have adjusted and accommodated this new situation, I am much better off finding my own way through until I can emerge with a sense of control again because that’s just the way I am. That’s the way I roll, as they say!

I will write again soon but do get in touch and let me know how you are doing as I would love to hear from you.

See you soon dear friends. I am sending you my love xx

Coping with a terminal diagnosis

This too, will pass!

When I’m asked how I cope with a terminal illness, I can’t always explain exactly what gets me through, so I’ve mulled it over to try and put something into words.

Firstly, I have had more than thirty wonderful years in my career as a Registered Nurse, so I’ve witnessed life from every angle through the patients, children and babies that I cared for. For twenty of those years, I specialised in Palliative care and it’s impossible to work for so long in this specialism without facing your own mortality. Crucially, I had to consider life and death for myself because without doing that, I couldn’t have been so genuine with my patients, and I couldn’t have built up the coping strategies required to specialise in this area for so many years. I learnt an awful lot from the patients I cared for, and I owe them a great deal of gratitude for the way I can cope now that I am in their situation. I remember many of my patients and can even recount their words of wisdom at times, so their influence on me not only as a nurse but as a human being, has been immense. Part of our palliative care training and preparation to specialise in palliative care was to consider what we would want for ourselves at the end of life, what we would want for our own funeral and how to have those difficult conversations, so over many years I have obviously given it some thought. I’ve been incredibly fortunate to think about my own death from a detached point of view which took a lot of the emotion out of my thoughts at the time. The vocabulary, the ethos, and the knowledge that I’ve been equipped with demystified death and dying to a certain degree and enabled me to be pragmatic when thinking about my own death. When death and dying are part of your everyday vocabulary and you have the knowledge of how death happens, it truly becomes less scary. This to me has been a blessing and brings me some comfort on the days when I do feel a bit scared. Yes, I do have those days too! We need to break the taboo of talking about death in the western world because only then will we be able to have those extremely important conversations about what we want for ourselves at the end of life. Honestly, I can promise you that one day we are all going to die so let’s talk about it as though it is a part of life….. because it is!

Secondly, I have always seen nature as the greatest teacher in life. I grew up surrounded by nothing but fields and trees so rather than playing out with friends in school holidays or after school, I roamed the fields for miles and miles with our family dog. I was very connected to the land from an early age and witnessed the seasonal changes first-hand because I was always out there submerged in it. The farm on which we lived, followed the pattern of the seasons and everything depended on nature and what nature was doing at the time. I saw the pattern of life all too well with the preparation of the land, the sowing of seeds and subsequent harvests. I saw plenty of death and rebirth in respect of the animals and wildlife that inhabited the land. I grew up experiencing and knowing the cycle of life applied to us all no matter whether we were human or not and this cycle could be so cruel and unfair at times. Possibly it was my childhood that paved the way for my nursing career and my fascination of dying. I lost count of how many animals and birds I tried to save as a child but despite feeling sadness when they died in my arms, I also felt a great sense of privilege that I had witnessed such a profound moment as a living being took its last breath. They taught me at a tender age that death happens, it’s a part of the cycle of life, that life isn’t always fair or just and that we are all mortal beings from animals to trees, from crops to flowers. We all have a life span. 

Then thirdly, closely linked to the above, my spiritual path as Pagan Druid helps to give me the resilience and hope I need to cope. I’m sharing this in my blog because it’s an important aspect of how I cope. My path is nature-based and is completely entwined with the seasons throughout the year. I trust that nature will show me the way and I hear through my senses what I need to know. Within my path of Druidry I also believe that anything that is living has a soul which is known as Animism. I am a part of nature and not separate, so I don’t see myself as being more important to other inhabitants on Earth or in the universe. With that in mind I see myself as being another part in the big web of life and that all living beings are part of the process of death and rebirth. We can’t all live forever or there wouldn’t be room for everyone so obviously we all have to die at some point. Nature shows us how to live and die if we watch closely enough and she will also show us through the seasons how new life comes around and there is rebirth. That gives me so much comfort because I know that life goes on and I can trust that all will be well. We are all bundles of energy, and our energy will continue in the spirit world so I don’t believe that when I die that I will be completely gone anyway. Nobody has come back to tell us what happens when we die, so if I am wrong about what I’ve said, that matters not to me because I will be returning to nature anyway. How could I ever be afraid of death when I know that one day I will return to nature; the very nature that I revere. 

There is so much more I could write about this aspect of life but this blog is a start. In time I will write more about existential crisis and fear. However for now, when you take away the fear of death through my career, my life experiences and my personal beliefs you can understand how I cope with living with a terminal illness. It’s not always that easy but for the best part, this is how I get through. Even I waver at times, and I’ve had several bouts of depression and struggled with existential crisis along the way. The key is to draw on everything that brings you strength and joy until this passes.  A favourite saying that I love is “this too, will pass” when life feels overwhelming, and it does indeed pass. 

Not my usual positive self!

Trametinib acne rash

What a difficult few weeks it’s been since starting the Trametinib. 

I started it on the 31^st August so I’ve been taking it for 4 weeks now. The first fortnight were not great with nausea, aching joints, headaches, tinnitus, abdominal pain, dry eyes, sore throat, dry mouth, fever and facial acne. My dry eyes were so dry that I would wake in the night with my eyelids stuck to my eye balls. My mouth so dry that my lips were stuck to my gums.

On day seven, I spiked a temperature of 37.8 C and had severe abdominal pain so I was admitted to hospital via ambulance for tests. I had not been in an ambulance since I was taken with blue lights to the Hospital resus when I had a post-operative haemorrhage in 2014, and so I had to dig deep to bury that trauma so that panic didn’t surface. I was on my way to hospital this time because it was thought I had neutropenia, and so in went the cannula (after 5 attempts and a huge bruise to show for it) and intravenous antibiotics were started. I was also suspected as being in bowel obstruction again so was nil by mouth from 8.30am. Of course, it would have to be a blazing hot day on the day I was admitted so being nil by mouth was extremely challenging. I was seen by the admitting Dr on arrival and told that I was awaiting an abdominal X-ray to determine whether I was in bowel obstruction so couldn’t eat or drink until that was excluded. From 11am I barely saw anyone except to change the iv antibiotics to iv fluids. I needed pain relief, but the nurse told me I had to wait until after the abdominal X-ray until they could give me anything. So, I waited and waited and waited. Eventually it wasn’t until 7pm when I was taken from the Acute Oncology unit to the Xray department for the abdominal x-ray and then taken to the oncology ward where I would spend the night.

Back on the ward I was expecting to see a Dr at some point to tell me what was happening and whether I could now eat and drink. Nobody came, so at 10pm I asked the nurse who came to discontinue my iv fluids what was happening. She told me that the Dr would come tomorrow morning to assess me. I cried! How could it be that a patient who had been nil by mouth all day would now have to wait until morning without any iv fluids, still nil by mouth and still no closer to knowing what was going on. I felt trapped and wondered how on earth animals in a zoo or a cage coped when their power was taken away and they were left without food or water. I felt panic stricken at that thought. Opting to discharge myself from the hospital against medical advice passed my mind several times, especially when the nurse doing the drug round said that I was not prescribed any analgesia or laxatives (which are essential when a patient is at risk of bowel obstruction) until tomorrow. I told the nurse I just couldn’t do this anymore and that I knew having been a palliative care CNS, that this management was absolutely wrong. She went away and said she would speak to the Dr.

At 11pm the nurse returned and said the Dr had visited the ward and said I could eat and drink because I was not in bowel obstruction. The Dr did not see me personally, so again my power was taken away because I couldn’t ask the many questions I had, including requesting medication. I’d been here all day and it turned out I did not need to be. Had I had the X-ray earlier, I would’ve been able to go home but instead had to stay in because it was so late. The Dr did not prescribe any medication for that night except IV paracetamol (for a patient who was now able to eat and drink I hasten to add) so I asked the nurse to return my medication which I had handed over earlier, which she did. I promptly medicated myself with my own laxatives and pain relief.

A nurse brought me a jug of water to drink and asked if I had brought anything to eat! Of course, I hadn’t thought to bring a packed lunch or dinner with me. I was given a pack of three digestive biscuits, a piece of ginger cake and an over ripe banana. I ate them!

The next morning the nurse came to give me my early dose of IV antibiotics. When I asked her when the Dr would be round, she told me that he would be here after their handover meeting after 9.30-10am. We talked about the likelihood of me going home to which I was informed that I was prescribed a course of antibiotics that I would need to complete and that they would need to get my bowel working again before I could go home. I was horrified at this but knew in my heart of hearts that I would most definitely NOT be staying in hospital another night. 

I was seen by the consultant at around 11am who told me that I was not in bowel obstruction. My bowel was not working properly but there were bowel sounds and so it hadn’t stopped completely, thankfully. I was also not neutropenic so I must have been continuing with IV antibiotics after those blood results had returned the day before which was so unnecessary. I stated to the consultant in the most assertive voice that I could muster that surely this could all be managed at home given that I had managed a previous bowel obstruction on my own at home and managed many patients with the same. He agreed!!! 

I eventually got home at 7pm feeling rather desperate and just a little traumatised over not only what I had endured but what I witnessed during my overnight stay. I won’t disclose this in a blog but suffice to say that at the moment, due to covid restrictions, patients have no visitors by their bedside to witness their plight and thus no advocates to be their voice when they are too fragile to speak. This not only upset me greatly, but it scares me for my own future because once in hospital, patients are powerless if they can’t speak up for themselves. What happens in there is no longer seen by loved ones because no visitors are allowed beside their bed as they used to be. This terrifies me because who will speak for me when I am no longer able!

When all is said and done, I have been home now for a couple of weeks, and I’ve been reasonably OK. I am managing my medication and any issues I run into with my Oncologist and my GP. I cannot bring myself to phone the Acute Oncology unit again. My Oncologist, who has always been amazing, has decreased the dose of Trametinb now so that I take it on alternate days. I think that is suiting me a little better as the side effects are not so bad. They haven’t subsided completely but then I don’t ever expect them to because cancer treatment is never going to be a walk in the park. The abdominal pain that I experienced was most likely due to tumour flare-up pain so wasn’t actually due to bowel obstruction. The fever and high temperature is also a side effect of Trametinib and was not likely to have been due to neutropenia. 

In hindsight my hospital admission was totally unnecessary and has caused more damage psychologically to me than any good. I have never experienced a hospital admission like this one ever before and have always had such wonderful care previously. The issues I endured were not down to the nurses or Drs but more a shortage of staff and a lack of coordination of care. If there had been someone coordinating admissions to the Acute Oncology unit, patients would then be followed through the system and their management would not then be fragmented. Such a person does not exist, but it would however avoid unnecessary hospital admissions for those who don’t need to be there.

Here we go again!

Trametinib

It’s about time I updated my Blog now that things have changed again on the cancer front. Back in July I wrote about the symptoms I had experienced since stopping the Aromatase Inhibitor (hormone blocker), Exemestane. Since that Blog, I have been reasonably OK with a low residue diet, laxatives and increased fluid intake. These measures have helped to reduce the risk of a further bowel obstruction but there have been days when the pain has been pretty bad after eating. This is probably due to peristalsis ie if you eat something, it starts a process of everything starting to move in the gastrointestinal tract. The pain I get is always in the same place, above the pubic bone and in the vaginal vault area which correlates to what we see in terms of disease on the CT scans. I knew there was disease there even before I had the CT scan results some time ago, because I could feel the pain in those areas. 

A couple of weeks ago, my CA125 (Ovarian Cancer marker) had increased again so it was time to make some decisions about what to do next.

I have agreed to take Trametinib 2mg which is a “targeted therapy” known as a MEK Inhibitor. It works by targeting and blocking the MEK 1 and MEK 2 protein within the cancer cell. I do not know whether the pathology of my cancer is likely to respond to this treatment, as I do not know whether the MEK 1 and MEK 2 proteins are present. In the UK we do not carry out testing of cancer tissue routinely to determine what genetic mutations are present. That is a great shame really because I could be having this treatment inappropriately and unnecessarily. In essence, I am taking this drug blindly in the hope that it will target a protein that is given off through a BRAF mutation present in some cancers. The aim of this treatment is to slow the growth of the cancer and is not for cure. A lot of people think that this drug is going to be a miracle drug that will cure me, but it will not. I have metastatic Low Grade Serous Ovarian Cancer that has been incurable for years but has turned out to be quite manageable over that time. What Trametinib hopefully will do is to improve my ‘progression free survival’ and essentially give me more time. 

The side effects of Trametinib are not the best, with some being quite serious.to be honest. However, when you look at any of the cancer treatments, they are extremely toxic; they have to be don’t they, in order to stop the tricky disease, we know as cancer. I took the first one this morning so let’s see how this goes.

It’s been a busy August with events happening and it’s left me feeling completely washed out. I think it’s important to have plans and things to look forward to, but right now I just want to be at home with nowhere to go for a while. Of course, that won’t happen because I need to go and see my son who I haven’t seen for months, and I need to see my poor Mum who has been poorly for a while now. After September I won’t be planning to go anywhere and instead will happily hibernate. There must be a balance between time for living and time for resting. I have no desire to go anywhere in order to tick off places on a bucket list, but I do have a desire to spend time with those I love, enjoy just being and to savour the seasons as they change. 

From a psychological point of view, I am probably starting to put things in order more-so since this last recurrence. I don’t want to leave everything until I am too ill to deal with it all but again it’s a matter of balance. Yes, I am in a very serious situation right now and I know that things might not go my way, but I don’t want to dwell in that dying scenario for any longer than I have to too when I still have time to live. My views on planning ahead for end-of-life care are largely influenced from my career as a Palliative care CNS for all those years. Afterall, wouldn’t I be the hypocrite if I didn’t practice what I preached for all those years? I will start to think more realistically how I am going to manage at the end of my life and tentatively make some plans. I don’t say this in a morbid way but in a common sense way. I’m a realist as opposed to being a pessimist! Psychologically this change in circumstance is having more of an effect on me this time. I feel very alone because coming to terms with the changes isn’t something that anyone can do for me. If I use humour or speak too candidly it hurts those I love, so I don’t say what I want to say and I don’t let out the emotion that I need to let out. I think that losing Luna has hugely affected my ability to cope as I usually would, because this recurrence happened at the same time as she went missing and it left me feeling exhausted and defeated. There are times when I don’t want to keep going but instead just let nature take its course. Then there are times when I feel the sanctity of life and gratitude for still being here. Living with this disease is a rollercoaster of emotions and at some point, I will work out what I need to do in order to cope with the changes. Until then, I refuse to join the toxic positivity brigade where I turn all the negatives into positives etc, and I refuse to use the war-like rhetoric of continuing to ‘fight’ this disease and win the ‘battle’. Instead, I will carry on living in the best way that I can without any pressure to follow a coping strategy that doesn’t fit with me. I am doing just fine the way I am. 

There and back again!

It’s been a while! I suppose it’s hardly surprising that I haven’t written much over the last year or so. With a Pandemic practically drawing life to a halt for many, there wasn’t really a great deal to report. From a disease point of view, I stayed very stable with the Aromatase Inhibitor called Exemestane, and in fact it worked miracles for a good eighteen months or so until I started to run into a few difficulties at the beginning of this year.

But you look so well!!!

My Ovarian Cancer is Oestrogen positive and thus needs oestrogen in order to grow. Aromatase Inhibitors block oestrogen and in effect starve the disease of what it needs in order to grow. The disease was still there scattered about in various parts of my abdomen, but it was dormant according to the latest CT scan report back then. However, at the beginning of the year the side effects of the Exemestane started to feel much more pronounced, such as bone pain, low mood, insomnia, dry irritated skin and acne. This might not be too much to complain about but imagine this constantly and forever, imagine being incapacitated through a treatment that is meant to give you life. I have never been someone who would subscribe to having treatments that will detract so hugely from my quality of life. After careful discussion with my Oncologist, I chose to take a break from the Exemestane which we would review after three months. Alongside this, I was having numerous dental issues with teeth breaking and dental abscesses. It was costing me thousands of pounds in dental fees which is money that I simply don’t have. Chemotherapy and Aromatase Inhibitors cause dental issues because the teeth become very brittle. A dental Xray at this point revealed thinning of my jawbone, which potentially could lead to osteo-necrosis (death of the bone) so I realised that I would not be able to restart the Exemestane when it came to needing it again. That door closed firmly behind me!

In the last few weeks, I started to feel more symptomatic. Mainly bowel related issues and just an odd pressure feeling in my abdomen, possibly a gut feeling that things weren’t right. I was soon due the three monthly Oncology appointment, so I had my bloods taken a little sooner. This revealed that my cancer marker, the CA125, had more than doubled from 32.6 to 71.9 and my Alkaline phosphatase was still quite raised. Many women can have a CA125 of 100’s but not have any symptoms or signs of disease progression. Every woman is so different, but for me the CA125 always goes hand in hand with disease progression and is coupled with increased symptoms. As for raised the Alkaline Phosphatase, this would normally be due to Bone secondaries but to date we have not found any so it’s still a mystery yet to be solved. 

The week of my Oncology appointment, I experienced a sudden onset of pain in my abdomen below my belly button. I had 4 days of agonising spasmodic and colicky pain; I couldn’t pass anything at all for two days but eventually I could at least pass wind. I couldn’t eat, couldn’t sleep and was so nauseated. I was shaking with the pain at one point and feeling like I was going to faint. It was honestly a pain worse than childbirth because at least with that, I knew that there would be an end to it. With this pain I was beginning to wonder how much longer I could tolerate it. I did contact the Hospital on day two of this episode and told them I was starting to experience a bowel obstruction, but the opinion was for me to wait to speak to my Oncologist at the end of the week. I did say I would call back in if the pain didn’t resolve, but I didn’t do that. Not wanting to be a coward, not wanting to make a fuss, not wanting to be a burden to others, I just sat it out and treated myself with Buscapan, Paracetamol, Laxatives and Tramadol. Eventually the acute episode passed but I am still suffering with abdominal pain that pushes down into the vaginal vault (where the cervix used to be). I can also feel a sizable mass behind the puncture site from a previous Laparoscopy. I wonder whether the cancer is tracking along the scar tissue into the skin above my pubic bone. I wonder if I’m developing a fistula. Unfortunately, this is where being a highly qualified Nurse becomes a burden and not a blessing. I have seen all the possible consequences of complications due to ovarian cancer and this knowledge and experience is not always something I benefit from. I’ll be having a CT scan in a couple of weeks to find out what the extent of the disease progression is so until then I will manage as best as I can.

I admit that I was very scared and vulnerable this week. I wasn’t sure if I was going to end up with a perforated bowel and peritonitis at the height of the pain but thankfully this didn’t happen. In hindsight I wish I had insisted on being assessed by the cancer unit in Hospital. Though I have diagnosed and managed countless bowel obstructions over the years, mine was only diagnosed by me- the patient and not the Doctor. Therefore, it won’t be counted as a definitive diagnosis in my medical records and that is something that is potentially very important for the future. This is because there are some treatments and some Clinical Trials that are absolutely not available for those who have had a bowel obstruction, for safety reasons. 

What next for me will most likely be Trametinib which is a targeted drug that blocks certain genetic pathways. I don’t know if it will work for me though, because in the UK we do not carry out genetic sequencing of ovarian cancer tissue unless a patient has a close family history of the disease. The bottom line here is that I am having a new treatment for my cancer without knowing if my disease has the specific genetic mutations that Trametinib targets. I will only know if it works if my CA125 falls and my symptoms subside. This is what women with Ovarian cancer have to face every day in the UK. Genetic sequencing of cancer is available privately, but it costs around £3000, and the results won’t guarantee the availability of a suggested treatment for any of the genetic mutations that are found. Many of the women in the ovarian cancer community are campaigning for routine genetic sequencing to be available to us. If it is available for other cancers, it should be available for Ovarian Cancer! 

I am doing OK despite this update. This is the reality of living with Low Grade Ovarian Cancer. It is quite slow growing in comparison to High Grade, but it is much more tricky to treat and there are many recurrences along the way. I knew that I was at a high risk of my cancer being active again because of the amount of stress I have been under recently and to be honest I’ve probably reached the average survival rate for a woman with this disease. Mainly the stress from my beloved cat Luna being missing for a month and a half has tipped the balance for me. I try to avoid stress at all costs these days but Luna going missing was a stressor that I couldn’t anticipate or avoid. I will write more another time about the therapeutic relationship between humans and animals because it’s something that I am passionate about. 

When I have more news, I promise to update on here. This Blog will never be a valuable resource to others if I don’t continue to write. It’s about balance, isn’t it? I need to spend some time writing and being creative but at the same time have time to rest, exercise, generally take care of myself and to live.

Ovarian Cancer Support Groups come to life!

I just wanted to share something very exciting with you today because I feel like I’ve contributed to history in the last month. Southampton now has its very own local Ovarian Cancer support group and Low Grade Ovarian Cancer has its very own international support group!

It’s July 2020 and we are just emerging slowly from the Covid-19 Pandemic so all support group meet ups have to be virtual, especially for those who continue to shield themselves. It’s a start though and I am so pleased to have been able to facilitate the beginnings of something that I hope will continue long after me. 

Last year I had intended to start an Ovarian Cancer support group and went so far as to voice my ideas and read the material available about how to set up such a group. However, Ovarian Cancer had other plans when I experienced yet another recurrence of my disease. The chemotherapy that followed, left me extremely fatigued again and with an uncertain future so all ideas to set up a support group were put aside. Fast forward to this year and I find myself in a better situation in respect of my disease, as the hormone treatment has been far more effective than anyone envisaged. Exemestane is my little miracle pill! I was picking up again and regaining strength but then who could have predicted that we would have a worldwide Pandemic that would wipe out most of what we usually do in life and stop us all in our tracks. The world feels to be a different place these days and for life to carry on, virtual meetings have now become the norm for many people. It is this that created an opportunity for me to plan and start up a support group. I discovered Zoom through a lovely friend of mine who kindly showed me how it all works and I’ll be forever grateful to her for opening up a whole new world to me. There is little that came from the pandemic that could be described as positive, but I see the setting up of two virtual Ovarian Cancer support groups as hugely positive!

I subscribed to Zoom and set about writing a Constitution for both of the support groups which helps to ensure that they are run properly and safely. I set up a few support meetings via Zoom for the Low Grade Ovarian Cancer Facebook Group which had a mixed response. The first had 2 attend and the second one had 12 join in, so I believe it is something that will take time to build. It’s an international group so the time zone is a factor when organising, so at the moment I’m trying to vary the times to ensure that I create fair opportunities for everyone who wants to join in. I’m not one to give in though so I am determined to keep going unless it becomes apparent that the group really isn’t needed. For both groups I’m keeping statistics in case there ever comes a time whereby I am needing to show the groups worth.

The Southampton Ovarian Cancer support group is slightly easier to organise without the time zone difference. I have had some brilliant support from the national Ovarian Cancer Charities Ovacome, Target Ovarian Cancer, Go-girls and Ovarian Cancer Action who critiqued my constitution to ensure it was going to be effective and safe. They now share the information with those who might benefit from the support group and have shared details of how to join on their websites. To say I am grateful to them all is an understatement because I really couldn’t have done this without their support. 

I see both support groups as being a shared support for those joining in as oppose to me providing all the support. They are not my groups but all of our groups and so when I am no longer able to facilitate them I know they can continue with someone else at the helm to facilitate. 

Maybe the Southampton Ovarian Cancer Support Group can evolve at some point in the future to actual meet ups but for now we are going to meet monthly via Zoom until we feel it is safe to discuss how or if we develop. Who knows, it might always be a virtual support group because it does have some positives for remaining as such. Due to fatigue, finances, reduced immunity due to treatment, reduced confidence etc the virtual support groups make it so much more inclusive so perhaps that will be the way we choose to continue. For now though, it works and we will take it one step at a time. We have formed a lovely rapport and bond in the first support meeting and I feel very lucky to have met such lovely women who are very supportive of the group.

It would have been a terrible shame to have wasted all the knowledge, skill and experience I had gained from a life-long career in nursing, so setting up the support group allows me to give something of myself and to feel useful again. Everyone needs a sense of purpose to give meaning to their life so I have chosen to become an advocate for those with Ovarian Cancer and to continue my career in a slightly different way!

If you or anyone you know would like to join the Southampton and surrounding areas Ovarian Cancer Support Group please email me here: southamptonovariancancergroup@gmail.com

If you have a diagnosis of Low Grade Ovarian Cancer you can access support meetings via the FaceBook page here: https://www.facebook.com/groups/1007723705963894

Cancer and Covid-19

It took several attempts to pick up my laptop and write this blog. Like many, the seriousness of what we are living through at the moment is having a huge effect on me, which resulted in a lack of any kind of routine or pattern to my day. I didn’t seem to be able to get my thoughts together for a while and my days consisted mainly of ruminating for hours and sleeping. To be honest, life isn’t that much different for me during these social distancing days to how I normally live my life because I rarely socialise, and I avoid people with illness at all costs, but somehow it totally threw me out of kilter for a while. We are in the middle of a global pandemic with Covid-19 and I am one of those classed as being in the most vulnerable category of being at greater risk of serious illness or death if I contracted Covid-19. The letter identifying me as one at greater risk arrived some weeks ago and we’ve done our very best to follow the guidance it sets out in order to shield me from the virus. We sleep in separate bedrooms, have different bathrooms and sit on separate sofa’s which all feels quite bizarre in the grand scheme of things. It really is not easy to live like this when time is so precious to us but if we don’t do all we can to preserve life, time could be shortened even more so. That’s a risk I am not willing to take.

I’ve tried to analyse why this situation virtually paralysed me initially into wasting my days away overthinking, watching endless news channels on TV and achieving next to nothing day after day. A lot of the feelings I went through to begin with because of Covid-19 are similar to those that anyone with a cancer diagnosis goes through when first diagnosed, which for me feels very uncomfortable to revisit. It’s something that we never forget because it haunts us forever. Hearing those words “I’m afraid it is cancer” felt like watching a movie, everything felt surreal as though it wasn’t really happening. Time stood still in that moment whilst alternating between walking around in a complete and utter daze and searching endless cancer websites for answers. Suddenly nothing in life felt certain anymore and we had to face our worst fears and ultimately our own mortality. It took time to adjust to such profound news and the new situation it presented, just as it takes time now for everyone to adjust to the serious reality that we are all facing with Covid-19.

I find myself wondering if people can identify with what I have written about how it feels to be diagnosed with cancer and whether they have found themselves glimpsing the world I live in. In some strange way it could be possible that people are experiencing to one degree or another, what it feels like to have the rug abruptly pulled from under their feet and to wonder if they are going to die. Right now, people are facing one of the greatest challenges in life that they could ever imagine, just as I and many like me faced when we were given our cancer diagnosis. No words can ever describe what it’s like living with cancer but maybe an experience such as what we’re currently living through might provide a glimpse. Like with a cancer diagnosis, this pandemic will change lives and for many life will never return to what they have always known. It will change the way they view their lives and the world, perhaps even their priorities so post-pandemic life becomes a new normal for them. That phrase is one that everyone who has experienced cancer will have heard at some point because life post-cancer is never the same again, it actually does become a “new normal”. 

When the Covid-19 pandemic passes I feel sure the world will be a different place to live in just as it does after a cancer diagnosis. A world where people have learned to slow down enough to experience a different way of living. One where they place more value on all that money can’t buy such as being able to spend time with their loved ones, having the freedom to go wherever they want to and whenever they want to, meeting up with friends and even just having time itself. A world where nature is more prominent, more appreciated and becomes far more important to people in their everyday lives with joy expressed on hearing birdsong, on seeing the seasons change and witnessing an animal kingdom that they’ve never noticed before. A world where we feel a strong sense of community and actually know our neighbours, seeing them as an extension to our family and network of friends. A world that is enriched through having to pull together to get through the most stressful and frightening time than many have ever experienced previously in their lifetime. A world that is more fragile than anyone could have contemplated and the realisation that none of us are invincible!

 What I am describing in this Blog is very much how I and many more like me view the world through living with a cancer diagnosis. The fear, the uncertainty in life and the vulnerability we feel is terrifying at times, but we have had to accept our lot and adapt to all the changes that such a diagnosis brings. Our priorities are different, and we have become much more humble and grateful for what we already have. There is a sadness too for those like me living with the terminal phase of cancer because time is precious and right now the plans that we had made and put on hold during the pandemic might never happen. We all think there is time! My hope is that when life does go back to the new normal for everyone, nobody will not take time for granted and regret wasted opportunities and will instead grab life in all its glory.

However long this period of time of shielding and social distancing continues for, I am praying I can stay well. There’s never a day goes by when I don’t thank my lucky stars that my cancer remains stable but to keep it that way, I have to religiously take the hormone blocking treatment every single day and that does come at a high cost to my quality of life. If my cancer becomes unstable, I am not in a good position to access further treatment because there is little else for the rare type of cancer I live with and in any case the new NHS England guidance would assess me to be to be the lowest priority for any further treatment. There just aren’t the resources right now in the NHS to do much else for me so right now I keep going and continue to do all I can to stay well. 

Let’s hope that the Covid-19 pandemic calms soon and that when we emerge into the big wonderful world properly again, we will view it much differently than previously. I don’t think we Humans could continue to contemplate living our lives at such a fast pace again and to be so disconnected from each other and the natural world around us. I am living in hope that we will all value our lives much more than we ever did prior to the pandemic.