ovarian cancer

Good Grief – Rediscovering the Value of Holistic Health

I realise I’ve not really blogged about my ‘cancer’ journey since the last time I had chemo (almost three weeks ago!), instead focusing on my random acts of kindness, so this post may be a little longer than usual…

Five days following chemo number five I was admitted to hospital…again. It was Monday evening and I started to get the same abdominal pains I’d had prior to my previous hospital admission. We had the usual back and forth conversation with the national cancer helpline before they contacted the ward and I was asked to make my way into hospital. By this time it was after 8pm. I was in a lot of pain and my limbs felt weak and achy. It was as if the bones throughout my body were being drilled. It was horrible!

I was put in a consultation room while they paged the doctor on call that evening. I was tossing and turning in pain and, at one point, lay on the floor in an effort to get comfortable. During this time a couple of nurses came in and attempted to get blood. Eventually one successed but not before several attempts, more pain and more bruises.

After being seen by the doctor I was moved to an empty bay. My husband was sent away and I tried to get some sleep while I waited to be taken for chest and abdominal x-rays. I really wish I’d stop having these – it’s been once a week lately and surely that can’t be doing any good for my body!

A porter arrived at 2.30am to take me to the x-ray department. I was helped into a wheelchair and we began the journey through the maze of corridors. The lights were out in most of them and the windows were open – hospitals can be frightening enough places during the day but when in darkness and empty and cold they become very creepy!

Prior to my x-ray I was asked the same question I’ve been asked before every x-ray, MRI and CT Scan but which, since surgery, has been heartbreaking.

Is there any chance you could be pregnant?

My medical records clearly state I’ve had a hysterectomy – or at least they should. They wouldn’t ask a man…and it’s just as ridiculous to ask me! More importantly, it hurts my soul every time they ask.

Following my x-rays I was returned to the ward. During my time away my things had been moved to a bay with five other people. It was now after 3am, I was tired and fell asleep quickly, not waking until morning.

I felt miserable when I woke. Sad about being back in hospital. Sad about the reality of my treatment and diagnosis. Sad about, well, everything. It was so unlike me! (Not helped by the fact that one of our beautiful fur babies had died suddenly over the previous weekend).


After breakfast I was visited by my oncologist. She hadn’t been told I was in hospital but had seen my name on the board. I was so relieved to see her. I trust her and value her opinion. Also, I know she won’t keep me in hospital unless absolutely necessary!

We both agreed that the reason for my admission was two fold. Firstly, the aches in my legs was due to my magnesium levels being too low. This was a symptom I’ve become all too familiar with recently as they seemed to be permanently low. In response, we agreed to double the dose of my oral magnesium medication. Secondly, she explained that my extreme fatigue and aching bones was due to one of my chemotherapy drugs – Paclitaxel. To combat this she suggested reducing the dose for my final chemo by 50%. This terrified me! So we had a discussion and agreed to reduce it but only by 20%. I once again felt my opinion mattered and that I too played a valued role in my treatment plan. I’m so grateful for this as I fear not all oncology patients are as fortunate.

Having made these changes she agreed that I could go home. However, as it happened, it wasn’t going to be that straightforward…

When my husband arrived to take me home I burst into tears. What was wrong with me? I hate being in hospital and I was getting to go home. I should be elated! We waited a while, had a chat and I calmed myself down. I packed my bag and we made our way to the door. However, en route, I got short of breath, my legs gave way and my heart was racing. I felt like I couldn’t breathe. My husband ran and got a nurse and when they took my pulse it was 157! I was put in a wheelchair and placed in a side room where a doctor immediately did a heart trace – it was of course fine. Although my blood pressure was very low.

My issue, it appeared, wasn’t physical.

My issue was panic. Anxiety, that I hadn’t even acknowledged, was rearing its ugly head. 

For weeks I’d been focusing so much on my physical health that I’d left my emotional health unchecked. I had stopped meditating. I had stopped spending time in nature. I had stopped treating my health holistically!

After resting I was allowed home. This time I felt calmer. I recognised what was happening and that I needed to make changes. When we got home my husband and I both fell asleep, joined by Robbie our rescue dog. When we woke, a few hours later, my sister had visited and left a surprise gift. She’d secretly been collecting messages from friends in a book for me, waiting for when I needed it most to give it to me. This was certainly that moment. My face streamed with tears as I read my loved ones’ words. It was the most beautiful gift I’d ever been given – the gift of love.

I knew then that I needed to make changes. I needed to pick myself up. And that’s exactly what I did. Over the next week I made several steps to start focusing on recovering my emotional and spiritual health and wellbeing:-

1. I wrote down my favourite activities; beauty treatments, time in nature, going to the cinema, comedy shows, eating out, spending time with loved ones. I then made plans to include these in my life as much as possible. For example, I booked a beauty treatment for every week over the next 2 months…starting with getting my nails done.

2. I went to see my GP and spoke honestly about how I was feeling. I told her that I felt ‘flat’ and disengaged. I explained that I had lost my normal routine since surgery and the frustration I felt being too weak to walk our dog or drive. She listened, not rushing me so she could see her next patient, but instead supporting me to make a plan.

3. I started driving again. Oh the freedom!

4. I started walking my dog again. Just little 5 minute walks with my husband at first but slowly we built this up and now, just two weeks later, we are enjoying 2.5 mile walks most days!


5. I started doing my random acts of kindness. They gave me focus. They gave me purpose. Most of all, they gave me joy! The ripple affects of the first one lifted me in ways nothing else could have.


6. I started cooking beautiful, healthy home made meals, focusing on using fresh organic ingredients proven for their anti-cancer or health promoting qualities as I had prior to surgery. I, of course, started with a meal from Sabrina Ghayour’s cook book!


7. I started meditating again. Remaining mindful and focusing on the present moment, rather than letting your past or potential future influence your emotions, is key to remaining positive and enjoying life. I’d lost touch with this in the weeks following surgery and, as a result, my positivity had faded at times. 

8. I started reading again. Although I am off work for treatment just now, my working career was as a researcher and I have a PhD so reading and learning are fundamental to my way of life. Prior to my surgery I’d immersed myself in learning all I could about cancer and cancer treatment – both conventional and alternative. However, since my surgery I had lost this focus and with it, I’d lost one if my greatest passions in life: new knowledge. 

9. Finally, and perhaps most importantly, I started seeing a psychologist at my local Maggie’s Centre. We’ve had only one session but it helped me tremendously! At the time of my diagnosis I was training (in my ‘spare time’) to qualify as a hypnotherapist and psychotherapist and so I have a lot of respect for talking therapies, although I’d never before seen a therapist for myself. It was a really powerful session for me. I was able to talk very openly about my prognosis and treatment and also about people’s responses. She validated my emotions, explaining how I feel and my response (mainly positive) is ‘normal’ and something she called ‘good grief’. Sometimes, when you are feeling anxious and maybe a little scared, that is all you need to hear! 

As a side note, I think it’s important to mention that Maggie’s provide this service completely free of charge!

As a result of these changes I feel transformed. I once again feel in touch with who I am, my values and my holistic approach to remaining healthy.

I am glad I had a ‘panic attack’ because it demonstrated to me the importance of focusing on all three aspects of health – physical, emotional and spiritual – in order to maintain my holistic health and wellbeing.

Love and light, Fi xxx

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Day 5 ‘inside’ and counting…

Well I’m still in hospital…

After my readmission on Friday night/Saturday morning the weekend was spent trying to get my symptoms under control. I continued to get antibiotics and fluids continuously via IV alongside morphine and anti-sickness through a syringe driver. Sickness continued to be an issue and eating a challenge I never thought I’d face – I mean did you see how much I ate at The Kitchin the week pre surgery!?! However, one or two mouthfuls and I was still being sick. I asked to be weighed and was horrified to discover I’d lost 1.5 stone in the last 2 weeks!! I didn’t even think that was possible! Weighing in at just 54kg now I became determined this was to be my main challenge to overcome.

I remember when I got diagnosed someone said to me…“you just need to eat, drink and go to the toilet, let the medical team take care of everything else.” I didn’t understand what they meant at the time, but I do no. I can’t control the drugs and medical interventions. The Drs can’t control my eating and drinking. Together we can work towards recovery…but apart…well that’s when things start to breakdown.

Step one was getting the medical help to get my sickness under control – so the anti sickness medication in my syringe driver was doubled. Now it was up to me to retrain myself to eat after three weeks of not being able to. It’s not as easy as it sounds. Very quickly your body builds negative associations. If, for example, every time you touched a door handle it gave you an electric shock you would soon learn not to touch the door handle! The same is the case if for three weeks, three times a day, every time you eat, you throw up. You no longer associate food wth pleasure, fuel or nourishment. You associate it with pain, anxiety and fear.

But, I’m a stubborn little buggar and this was not going to defeat me. Baby steps. Day by day. Bit by bit. It wasn’t easy and, as crazy as it sounds, retraining myself to eat was one of the hardest challenges I’ve had so far on this journey. Yesterday was actually the first day I managed to eat three full meals. And I tell you what…I feeling a great deal better for it! To overcome this I used meditation. I realised that whilst I had been very conscious of my emotional health prior to surgery, since my op I had gone on a downward spiral, completely disregarding my emotional health…which is probably what had gotten me into this whole cancer situation in the first place…I guess old habits die hard. Anyway, reflecting on how great I’d felt prior to surgery, for the past two days I have been meditating and I think I’m getting there now. I’m now going to lie though, the threat of artificial feeding may have also played a role! 

Monday brought with it the usual ward rounds and, with it, my oncologist, my Macmillan nurse and the local gynaecology surgical team; all of whom I have gotten to know really well throughout my journey and whom I feel all truely get who I am as a person and my outlook to life. It was comforting to see familiar and friendly faces and, once again, I felt assured I was in the best possible hands.

For example, my oncologist is wonderfully understanding and knows how important being outside and independent is to me and so actively encourages and supports me to make it outside for 15 minutes each day – these little things make a massive difference to your overall recovery and already I feel a million miles from how I did when I was first admitted.

However, despite this, I’ve been told to ‘bed down’ until at least next week. Whilst I may be over the worst of it (fingers crossed!!!) I am far from fighting fit. Over the last couple of days I’ve had three blood transfusions alongside a continuous cocktail of antibiotics and fluids. This has involved an IV in each arm and two drip stands, either side of my bed. I’m sure you can imagine the comedy of me trying to make my way to the toilet!…but I guess, at least, the fact that I can joke about it must be a sign that I’m getting better.

The plan now is to keep me on fluids and antibiotics and to repeat the CT scan later this week. If the ‘collection’ is decreasing then the antibiotics are having an affect and it is an infection. This could mean it may need to be drained, under sedation, using a CT for guidance. If it isn’t decreasing, however, then that would indicate that it is just a collection of fluid or blood and, ultimately, not an issue and that the pain and sickness was caused by something else. I guess time will tell. Until then I am making myself at home, making friends with my fellow ward mates and adjusting to life with ‘sound proof’ hospital curtains.

Love and light, Fi xxx

ovarian cancer

Early Hospital Admission (video)

Wednesday (my birthday) I received multiple phone calls from the two hospitals involved in my care to let me know that my platelets are low and I need to go into hospital two days early to have a transfusion before my surgery next week.

I was absolutely devastated! I have big plans for spending Saturday with my entire family before coming to the hospital on Sunday but this news meant I’d be spending the time in a ward – which is not quite the same!

We chatted about the possibility of me having a transfusion in my local hospital as a day patient so I could have Saturday at home but it just wasn’t to be so instead I spent last night running around my house getting ready for my admission in one evening, rather than over the next few days as I’d planned!

This involved, packing, cleaning, getting the pets off to our lovely neighbour (💖) and driving the two hours to the hospital I’m having surgery in. We have rented a flat near that hospital for my husband to use whilst I’m in hospital so at least we were able to stay there last night so we could be in hospital for 9am this morning saving the need to leave at 6am! I’m exhausted enough as it is!

However as it transpires when the hospital took my blood tests this morning things weren’t as they expected…

My platelets are back to normal. Hurray! So I don’t need a transfusion after all. My white blood cells are low though, too low for surgery in fact, so I had to have an injection in my tummy to stimulate my bone marrow. The jag was fine to get just a bit like a bee sting to the tummy. This should get my white blood cells back up again for next week. 

All this means I get to go home tonight after all! I have to come back in early on Sunday for preparations for my op on Monday but at least I get my day with my family tomorrow!

The trip wasn’t wasted though – I got to meet my surgeon again and the stoma nurses came to explain the possibility of waking up with a colostomy bag and marked me for the bag should this occur. I’d already had chats in my local hospital about this so no surprises!

I also got to see the High Dependency Ward that I’ll wake up in post surgery. This was very reassuring as it meant I could meet the nurses and get a sense of all the machinery I’ll be hooked up to. My imagination (as usual) was much worse than reality!

 

But I can’t tell you how happy I was to get out of the hospital and come home! 


After thinking I wasn’t going to see my home for a few weeks it was amazing just how satisfying walking through our front door was. A bath has never felt so good, a bed never been so comfortable and a home cooked meal so tasty!

And as for seeing my pets again?!…heaven!

It never ceases to amaze me how often we take these simple delights for granted. What a blessing it was to be reminded how lovely and fulfilling my life is and how many simple pleasures there are every day…walks with my dog, my garden, time with family, cooking a healthy meal (hospital food is never that great is it?), cuddles on the sofa with my husband, listening to music in the bath and sleeping in my own bed. Wonderful!

And best of all, tomorrow I get to see all of my family before my surgery next week!

Love and light, Fi xx

ovarian cancer

Hospital Essentials: Chemo 4 – Day 13

With a surgery date iminent (although still not confirmed!) I’m doing my best to ensure I’m prepared. This is really just a ploy to keep the control freak in me from panicking! For the first time in my life I’m actually thankful I’ve spent time in hospital on a number of occasions (some even prior to my diagnosis!) and know exactly what I need to make my stay as comfortable as possible.

As I plan what I need to pack – and what I still need to buy – I thought I’d share my top ten must haves for hospital survival.

1. Earplugs and Eyemask: Sleep is one of the most important things for healing yet, ironically, one of the hardest things to do on a hospital ward. It’s noisy and you have no control over when it’s ‘lights out’ (unless you are lucky enough to have a side room). Earplugs and an eyemask are life savers in this situation.

2. Nice toiletries: Let’s be honest you are in hospital for a reason so you are probably going to be feeling a bit crap! Some nice toiletries can make all the difference. If you will be able to have a shower whilst in hospital (not a luxury I’ll have I don’t think) then take a nice shower gel. You know, one that smells amazing! Moisturisers are essential too – your skin will get very dry and you’ll always feel better after using some cream, especially on your face…personally I just use coconut oil. Baby wipes are also a must have! They allow you to quickly freshen up and feel more human when you get some visitors, even if you are unable to have a proper wash.

3. An extra long charging cable for devices: You’ll usually find a plug high up on the wall behind your hospital bed which you can use to plug in and charge your electronic devices. However, if charging with just a normal cable you will be unable to use the device or have to contort your body to do so because the cable won’t reach your bed. An extra long cable (I use a 3m one) helps resolve this. Problem solved!

4. Electronic devices: Everyone has personal preferences here but for my upcoming admission I’ve purchased an iPad Air 2 64gb. Whilst I’m aware I won’t be up to using this for quite a while following my operation, in the weeks that follow it will be a life saver in terms of allowing me to watch Sky TV (through Sky Go), watch films, listen to music, stay in touch with people through social media and, of course, update my blog!

Another electronic device I’ll be taking is my phone!

Obviously remember to take your headphones too!

5. An ibeani: This awesome little product is recommended by Live Better with Cancer as a way of allowing patients to watch a tablet without having to hold it or sit up if they are unable to post surgery. I’ve just purchased one and so I’m unable to comment on its effectiveness but I’m hoping it was money well spent!

6. Bedwear: I love pyjamas and any excuse to buy new ones! Always make sure you take plenty of pairs with you into hospital. These are your clothes and bedwear while you’re in so you’ll be wanting them washed (by a helpful loved one) on a regular basis. Having lots of pairs with you ensures you have enough to keep you going.

Take a nice cotton (not fluffy!) dressing gown too. It allows you to keep yourself decent when your in laws or coleugues (for example) visit without becoming roasting hot or feeling like you are obviously in your bedwear.

Comfortable slippers with a rubber sole help for when moving around the ward, when you go to the toilet for example.

7. Two drawstring bags for laundry: The helpful loved one doing your washing doesn’t really want to have to touch it. By packing two cotton drawstring bags you can fill one with your dirty washing. Then, once full it can be taken away and popped in a washing machine with your dirty clothes still inside! Your lovely, helpful loved one can then handle and dry the clothes and bag once they are nice and clean out of the machine. In the meantime you can start filling the other bag to repeat the process.

8. Sensible pants: In my experience of being in hospital, other people (Drs, nurses etc) see you in for underwear a lot! For instance when I was in for a hip operation I had Drs needing to draw on my hip before surgery and check the site after surgery and nurse injecting anti-blood clot medication into my thigh each day. Whilst I’m sure the staff don’t care what your underwear looks like, you’ll certainly feel much less self-conscious if you have some ‘sensible pants’ on rather than your best French lace when the student Dr is checking you over for instance.

9. Colouring books/puzzles/games/books: I always take a range of different activities. Sometimes you will be up for reading and sometimes your brain won’t manage it due to medication, pain or tiredness. Also remember when planning what activities you will likely use whilst in hospital that your brain will be in a very different state from normal.

10. Games for visitors: When in hospital you spend a lot of time with visitors and sometimes you want to take about your health and sometimes you really don’t! A good distraction is to have a couple of games on hand (or ask them to bring one). My personal favourites are travel battleships, travel 4×4 and cards against humanity (not for the faint hearted).

Is there anything I’m forgetting?

Advice is always welcome!

Love and light, Fi xxx

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Pain, drain and a friend’s baby

Today was another busy day. I knew I was to be admitted to the oncology ward but didn’t have a time and had been told to just wait for a phone call. However, instead I woke to the wonderful news that one of my best friends had given birth to her baby girl during the night – and in the hospital I was being admitted to! Nothing brightens your day like meeting a brand new baby!

Barely able to concentrate after that awesome news, I spend the next hour reading through the information sheet on the drug trial my oncologist suggested I enter and writing a list of questions. I had so many! My poor oncologist underestimated asking someone who is a researcher for a living to enter a drug trial!

The hospital then called to ask me to come in just after lunch – I was to have another abdominal drain to remove the fluid that had built up in my abdomen (again) and then tomorrow a biopsy of my cancer and then on Thursday a kidney function test for my chemotherapy – so a few days in hospital were definitely on the cards again!

I had already booked a head and foot massage at my favourite salon a few days ago for this morning and I wasn’t away to cancel it so the owner very kindly squeezed me in a wee bit earlier. This meant I got to have an hour of something nice happening to my body, rather than the needles and tests it had been constantly subjected to over the last few weeks! I’ve been told I can’t have a body massage because of my tumours but the head and foot massage were utter bliss! This may be something I’ll include in my weekly treatment to help ground me and give me something nice and relaxing to look forward to.

After that my husband and I headed to the hospital where the labour suite made an exception, given the circumstances, and let us sneak in for 15 minutes to meet my friend’s new baby. She was utter perfection! And it was such an honour to meet her whilst still in hospital! Wonderful and definitely a highlight of recent events!

When we arrived on the oncology ward I was taken for an ultrasound to mark where would be best to put the drain in my abdomen to remove the fluid. This was painless and just involved a big black marker pen!

I was then subjected to countless nurses and Drs coming for chats about my diagnosis and treatment, including my oncologist coming in to answer my questions about the drug trial. During this chat she explained that only 60 people in the UK will be given the drug and only 9 of these will be in the hospital that I am being treated in. She also explained that I would be the first in this hospital to be given the drug. I felt reassured by her answers though and encouraged that she said if she were in my position she would enter the trial. On this basis I have initially agreed to enter the trial – although I can change my mind at any time.

She also filled out my cancer insurance forms – yes I have cancer insurance and I highly(!) recommend that anyone with a family history gets it! It costs about £5 a month and, let me tell you, cancer is an expensive lifestyle and money is definitely required! I sadly discovered that my life insurance doesn’t cover me because I only have critical illness cover and not terminal illness cover – also something I suggest people look into while they are still fit and healthy! It’s not morbid – it’s sensible!

The meeting with my oncologist was also really upsetting. She explained that she can’t cure my cancer. She can get me into remission but the cancer may come back and then I may go through this process again. When you are 30 and full of life this is not easy to hear and take in. It didn’t physically hit me until two hours later though when I saw my husband and I just cried and cried. It’s something I knew but hearing it was part of accepting it.

After all these chats – which lasted over three hours! – it was time to have a cannula put in my wrist and  a drain put in my abdomen. The Dr came to put the cannula in and it was so painful I actually called him a bastard! Poor guy because in reality he was lovely but the word just came out! The research nurse then came and tried and put one in my other hand. This time we managed to get through without any additional profanities!

The Dr then came back (the one I’d sworn at) to put a drain in my tummy. This involves injecting local anaesthetic into my tummy and then cutting a small hole and inserting a tiny tube to be left in overnight. The hole is only about 0.5cm across but it goes through your abdominal muscle and, although I’d had a drain in the past, I just couldn’t take the pain at all and he had to stop after a number of attempts. In hindsight I’ve realised that when I’m feeling emotional about something, my pain threshold is lowered (like when I had the dye at my CT scan) and so I think this was a result of having just had a chat with my oncologist. So, we are planning to have another go in the morning in the radiology ward when they do the biopsy of one of my tumours – fingers crossed it goes more smoothly. Usually my pain threshold is very high!

Now I am, once again, worn out from all the prodding and so I’m having an early night to ensure I’m ready for another busy day tomorrow.

Before bed though I managed to squeeze in a wee bit of tomato soup with ‘buzzy bee’ and my husband by my side for company – I’m pretty sure the nurses think I’m weird but it brings me comfort and reminds me of friends and that’s all that really matters!…

love and light, Fi xx

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