The Royal Marsden

We went to London for an initial consultation visit with the Royal Marsden Hospital and, from the information they have so far, there is nothing to exclude me from the clinical trials of the new immunotherapy drug TSR-042 they are trialling. There are many more criteria that needs to be tested for/screened before I would be accepted onto the trial though. They are even taking my original tumour out of storage to take a biopsy!

They invited me back this week to begin screening all of the remaining criteria required for my body to meet. They also need me to have another CT scan before the end of the screening period but they need to do it there in London. Basically they have 35 days to complete the screening process and let me know if I am in or out of the trials.

Really it’s all stuff that’s out of my control but one criteria is that my haemoglobin must be above 90. I can’t remember the last time it was that high. And you cannot begin the trial within three weeks of having a blood transfusion. I think this could be the one that lets me down, but we’ll just have to wait and see.

If I do get on the trials, I will have to travel to London twice every three weeks. It takes almost two hours each way, so it’s quite a trek for both Andy Andy and me. I nearly passed out on our first visit so we brought me in from the car park in the wheelchair the second time.

Otherwise I’m not bad in myself, just tired and can’t get about very much.

Scan results

The results are back and it’s not good news I’m afraid. The cancer has progressed and the tumours have all increased in size. Consequently, they have stopped the chemotherapy I was on - it hasn’t worked again!

My consultant is now going to contact the Royal Marsden Hospital in London to find out if they can offer me any immunotherapy clinical trials. We’ll just have to wait and see.

My anti sickness tablets have been changed again and, although it’s only been a few days, they do seem to be helping. They make me feel very tired though. I’ve not been getting up very early lately and some days I’ve just stayed in my pyjamas all day!

I’m struggling to get motivated for Christmas too. I have no idea what to do for gifts for family I’m unlikely to get to see. Normally we would drive all over the place visiting family, but this year I’m not up to it. Hopefully I’ll think of something. 

In and out of hospital

I’m now a grandmother! Mum and baby are doing fine. As well as baby visits I’ve spent time in and out of hospital and overall been quite poorly. First it was suspected internal bleeding as I had black stools. However, after and endoscopy and X-rays, they can’t find a source of bleeding so they changed some of my meds and sent me home. Then, after a blood transfusion, I had an episode of severe lower back pain which landed me in A&E. They admitted me but are still unsure if it was a reaction to the transfusion or an infection. Now I’m back at home. I’ve got a CT scan on Monday and consultant appointment on Thursday which will give us an update on whether this chemo has done anything. I do feel as though I have deteriorated though. I’m struggling to get about as much and off my food. We’ll see what they say on Thursday.

Low haemoglobin again

Another round of chemo done but I have been really sick with this one; though the sickness has improved since they took the pump off on Saturday. They’ve taken bloods again today and my haemoglobin is at 64, which apparently is very low so now I have to have another blood transfusion tomorrow. Why can’t things just stay normal for a while?

I’ve got an appointment with the consultant tomorrow but, as I’m not due a CT scan until the end of the month, there will be no news. I’m still on two types of antibiotics long term and one is notorious for making patients feel awful but luckily I’m getting on ok with it.

Blood transfusion

PICC line is in.

They let me have chemo this week despite low haemoglobin and low neutrophils, but I had to have a blood transfusion today and also have some additional injections to administer myself for the next five days to boost my immune system. I feel alright in myself though and haven’t had too much sickness so far. I’m still eating ok and the nurses seem happy with things as long as I stay away from any possible sources of infection/illness.

The night sweats seem to have returned though, which is really annoying, so back to sleepless nights and changing the bedclothes at stupid times in the morning.

Two friends I met in hospital have died this week, so on a bit of a low emotionally as we had been a trio that kept in touch and now I’m the last one left! Sad times.

Nausea

Just a quick update

Still feeling sick, though I have had a few nausea free days to be thankful for and I have been feeling a lot better in myself. I saw the consultant today and they are happy to push along with chemo and continue with my meds as they are. I’m getting a new PICC line put in tomorrow ready for chemo next week as I only had the Irinotecan last week without the 5FU.

Thanks to everyone for all of the flowers, prayers and well wishes... I do appreciate them. My biggest thing at the moment is boredom. I can’t focus on much for more than about 20 minutes and iPad games are just not cutting it. I need to get back into reading again but I’m finding it too hard to concentrate... now I know how the kids feel at school!

I can’t walk very far anymore, and I get exhausted really quickly just doing normal daily tasks like loading the dishwasher. It’s frustrating but I just need to accept it.

Guinea pig

I saw my consultant last week and he told me he didn’t know what to do with me because he hadn’t had a case like mine before where someone seems so well after repeated hospitalisation for a severe infection. So he gave me the option of trying chemo again, as I hadn’t been on it for long enough the last time to see if it was having an effect. I said yes because I’d rather be trying something than nothing. So I have become a bit of guinea pig, remaining on the long term antibiotics as well as trying the chemo again. 

Nothing will change prognosis-wise as they have no idea what will happen. But I had my chemo yesterday, and other than no sleep due to severe stomach spasms, I haven’t had any ill effects so far.

They are all doing the best they can and throwing everything they can at me, which is all I can ask for.

Bring on some good days.

Back at home but not good news

For those of you that don’t know I’ve been allowed home from hospital with a whole load of antibiotics to take, but at least for now there are no more needles.

I’ve still been sickly and am struggling to keep food down. Also, I’m falling asleep all of the time... it’s like I’ve got narcolepsy!

Unfortunately the surgeons met and have decided that surgery is not an option for me. They believe the infection is in the secondary tumours, which are attached to my bowel/stomach and that there could be some leakage into my abdomen. I’m not really surprised as there’s not enough of my bowel left to work with.All in all it means there’s nothing more other than antibiotics that they can do for me. My surgeon said I don’t have long left, but couldn’t define that statement further. I have the hospice involved in my care now and a DNR in place so that if things get really bad, they don’t intervene surgically, as there is no point.

We are trying to get out in the wheelchair as much as possible while I still can, but I have no idea how long it’ll be that I am able to. 

I’m not really up for visitors at the moment due to my sickness and tiredness. We’re also trying to get our heads round the finality of the situation we find ourselves in, whilst still trying to stay positive and make the most of each day.

I am so grateful for all of the support I’ve received and please forgive me if I don’t reply to messages; it is literally that I’m not feeling well enough. X

Infection

Sorry for not keeping everyone up to date - I’ve been so poorly with this infection. I was readmitted to hospital last Thursday with a high temperature and being sick. They still can’t pinpoint where the source of infection is, but the microbiology department have said that what they have grown on the blood cultures they took looks like the type of bug you’d find living in a Picc line.

So they removed the Picc line but this has meant all the nightmares of finding my veins to take blood/ insert a cannula have returned. The Picc line was only removed the day before yesterday and I already have at least 9 holes in my arms/hands!

They also did a CT scan from which the doctor has said there could be an infection near my spleen. This has been referred to my surgeon to see what they want to do about what they can see.

In the meantime I’ve been having issues with my blood pressure and pulse rate, which is causing extreme tiredness and nausea.

I made it to 40 last week... and I was at home for my birthday, though not feeling well. Andy did the place up with banners and balloons and bought me an infinity necklace to match the bracelets I bought for Margot, Sophie and me for the wedding, so that was really lovely.

I can’t see myself being allowed home from hospital any time soon, so I’ve just got to deal with it for now.

No chemo again!

Came home from hospital on Monday with some antibiotics and the expectation of having my missed chemo session today... It turns out my body had other ideas. In the space of 24 hours my white blood cell count and my neutrophils had increased significantly. To add insult to injury, when I arrived at the chemo unit, my temperature was 35.2!

The nurse said fairly early on that I would not be having treatment today, but I had to spend the whole afternoon at the hospital while they took another set of bloods and some blood cultures. The conclusion was that basically they do not know what is wrong with me (apart from the obvious). They were debating about whether to re-admit me to hospital, but decided to send me home with a further seven days of the same antibiotics as my blood levels had come down slightly since yesterday. They will call me on Tuesday if the blood cultures show anything.

So at least I’m in my own bed, but just mighty fed up with my stupid body... I know I might not have long left, but I most certainly do not want to spent the bulk of it in a hospital bed!

Sick of it!

No chemo today

I haven’t written for a while as I’ve been so busy with wedding preparations, my daughter moving into her own flat and just lots and lots of visitors. 

The wedding all went according to plan with some lovely additional surprises provided by my and Andy’s friends. It was just such a lovely day, despite the short burst of rain just before the ceremony (it had dried up by the time we came outside for photos). We also had a hand fasting ceremony which followed the main ceremony and used the Roxburgh tartan (another surprise gift from two dear friends). We still await the official photos, but there are a few on Facebook.

We should have married a long time ago, but family politics always put us off and we just decided it was easier not to- that way no-one gets upset. However, my illness gave us a kick up the bum and we decided to do it our way. I am so glad that we went to Gretna Green and made it a small, intimate affair (it was also a heck of a lot cheaper). All of the staff at Gretna, including the minister, made it such a personalised wedding, giving us all the time we wanted. We had a lovely meal at the hotel, but I was in bed by nine pm as I was feeling sick. I can’t seem to eat very much in one go at the moment because it makes me sick.

Following the wedding, Andy and I spent a couple of extra days at Loch Lomond and Glasgow. We visited the Glengoyne distillery and Sterling Castle, but we didn’t make it to the show we had tickets for, as I was feeling too unwell. We headed back to Ipswich on Wednesday, but overnight on Wednesday  my temperature went up to 39.1!

So, I am writing from my hospital bed as they are keeping me in for a few days to administer antibiotics and monitor my bloods. I was due my next lot of chemo yesterday, but they can’t give it until any infection has been treated. 😞

Off with the hair

My hair started to come out in big clumps this week, so it was time to brave the shave. Andy did the shaving for me so now I have dug out my huge collection of scarves to wear on my head. I bought a wig for the wedding, but it makes my head very hot so I don’t think I’ll be wearing it for too long. I’ve also ordered some chemo hats online.

The arm is back to normal size and the blood clot seems to be disappearing, the only downside is I’m getting quite a bit of bleed back where the PICC line goes into the skin.

I had my second round of Irinotecan chemo alongside my first round of Flurouracil (which included being attached to a pump for 46 hours at home following the 2 hour dose at hospital. I’ll let you know about side effects, but so far just severe fatigue and nausea and I’m off alcohol as I can’t really stomach it.

It’s only seven sleeps now until the wedding and everything’s pretty much sorted. I’ve just got to focus on staying well enough.

Spoke too soon!

A week after coming out of hospital... temperature normal... blood pressure normal... Picc line fitted. Hooray! I woke up feeling nauseous and dizzy, but that I put down to the chemo. We were going wedding dress shopping today even if the sky fell in. It’d already been postponed twice!

So we piled into Sophie’s car and set off to Bungay to the dress shop. Bless Claire, the lady in the shop. She dealt so well with my repeated need to sit down before I pass out after trying on each dress. Pink lemonade works wonders when you need a bit of a sugar boost. I ended up choosing the first dress I had tried on... typical me.

Relieved I had finally got a dress to get married in, Andy, Sean and I decided to get a Chinese in for dinner - yum! 

My left arm had begun to ache during the afternoon, but I had just put it down to the Picc line settling in. By 8.30pm, my arm had actually become quite swollen, so I decided to call the emergency oncology number to seek advice. The nurse I spoke to said I should call 111 to try to get an out of hours GP appointment. I spoke to a 111 ‘clinician’ who told me to call oncology back and demand to speak to a doctor 😂😂😂. So anyway, we ended up back in A&E!

By this time my arm was about double the width it should be and very grey in colour. We sat for 2 and a half hours while they deliberated what to do with me. They were worried there could be a blood clot and DVT, so they decided to keep me in to have an ultrasound scan the next day. The ultrasound showed blood clots, so the doctors on the general ward wanted to take the line out. However, the oncology doctor I saw in the afternoon said he’d rather keep the line in as it was still functional. The result was that I was sent home with a still swollen arm and the need to inject myself with blood thinners twice a day for the next six months (oh joy!).

Out of hospital and back to normality (whatever that is!)

After a week in hospital and a successful blood transfusion alongside various antibiotics, I found out that I had been a victim of sepsis and that I have a high risk of readmittance to hospital in the near future. My temperature and blood pressure have been low, but this has been put down to loss of fluids through the general heat and the ridiculous night sweats I’ve been having. On the plus side, I met some amazing fellow cancer sufferers on the ward, who helped to make the stay much more entertaining and we also learnt a lot from each other about our various experiences with the disease. These ladies are sure to remain lifelong friends of mine. Since coming out of hospital I’ve had a few other visits too from friends, which has given me a morale boost.

I can feel my physical health deteriorating; I can’t walk anywhere near as far as I used to be able to and I get out of breath doing simple household tasks. I’m now on permanent slow-release morphine, which is managing the pain a majority of the time, 

I did manage to ensure I was well enough to have some level of chemo on Thursday, although it was not the full compliment of drugs (due to the PICC line not being fitted in time). I had the PICC line fitted on Friday, which was actually a lot less of an ordeal than I had imagined it to be, so I am now fully ready for my next round of chemo (Irinotecan and 5FU for those who are interested in such things) and.... best of all... no more needles (or almost as there are some things they can’t do through a PICC line)!

I had a meeting with the Macmillan Family Support Worker from the palliative care team last week, and today an initial assessment visit from a specialist nurse at the St Elizabeth Hospice. Both were very helpful and I was surprised at all of the services they can offer to help me maintain as active and ‘normal’ a life as possible.

Wedding dress shopping is rebooked for tomorrow, which is a good job as it’s only three weeks away! Pretty much everything else is sorted thankfully... just a wig to find, as I’m likely to have no hair by then. The Cancer Information Centre have been fantastic in signposting and making referrals for me for everything from financial advice to counselling to wigs! The Macmillan Benefits Advisor has also applied for a blue badge for me, which has been a godsend, meaning I can continue to do things like the weekly shop and go to the hospital without having to use a wheelchair.

Hopefully this week will be a bit calmer! 🤞

Weddings, funerals and blood transfusions

We are still coming to terms with the news and have really been off our food. Andy has lost half a stone in a week; I’ve put on 2 pounds (ridiculous)!

Last week I booked the wedding and pre paid my funeral (I bet there aren’t many people who do that in the same 7 day period!). I also had lots of other appointments and plans for this week, including wedding dress shopping, which were scuppered by my temperature being sky high on Tuesday, meaning I had to be admitted to hospital.

My temperature had been up and down in the previous few days. At one point it hit 38.9 and we called the emergency oncology line. They said they did not have enough staff to triage on a Sunday so we should go to A&E! There was no way I was going up there to sit for 5 and a half hours again (as this is what had happened a couple of weeks ago and I cannot sit upright for more than about an hour without being in pain. Also, I do not believe A&E is the place for terminally ill people to be), so we left it another hour and by then my temperature had dropped back down.

By Tuesday morning the pain was really bad and I felt horrible so Andy called the emergency line again and this time they told him to bring me in to the Macmillan Day unit (a much more appropriate place). They took bloods, which came back showing an infection and told me I would need to stay in hospital for 24-48 hours. It’s now Thursday and I’m likely to be in for at least a further couple of days as my haemoglobin is low and I’m anemic so they are planning to do a blood transfusion tomorrow. My temperature is also still up and down so I’m not going anywhere anytime soon.

It’s so frustrating because I was due to have a PICC line put in tomorrow morning as my veins are getting more and more difficult to get blood from and to get lines in. This can’t happen now until I’m infection free, so these poor nurses are having to battle with my crappy veins.

I just need to shift this thing now before it interferes with my next program of chemo!

There are no words for this title

Last Thursday we went to see the oncologist for the results of my 3 month restaging scan and were faced with the devastating news that the chemo hasn’t worked and the spot they found on my peritoneum has grown into a tumour along with several of my lymph nodes now enlarged and cancerous. I had gone along to the appointment with an already negative mindset as I had been in some pain and discomfort in the week leading up to the scan and had convinced myself something was wrong. So I didn’t have chemo that day as had been planned and am now on a 3 week break from chemo while the oncologist looks into possible immunotherapy trials I may fit the criteria for. If none are available then I am to begin a different type of chemotherapy on 2nd August in an attempt to slow the growth/shrink the tumour. I have been told that my life expectancy with treatment is a maximum of 1-2 years.

Almost a week after receiving this news, we are still in a state of shock and crying has, once again, become the norm in our house. Macmillan have been a great support in financial advice and we have also been referred to the Macmillan family support team, counselling service and St Elizabeth hospice. The pain is a little bit worse each day, but I’m just about managing with paracetamol at the moment.

Andy has been contacting hospitals abroad about potential treatment opportunities elsewhere and I’ve had several people contact me about alternative therapies, but I can’t help but feel I’m losing this battle. It’s not in my nature to lose, so this situation is extremely hard for me to get my head around.

I am very grateful to all my friends who have visited me/planned to visit me since I got the news and for the flowers/cards. I have found that I am better when I have people around me because sitting on my own makes me go to that dark place where the negativity creeps in.

Halfway There...and Living On a Prayer (literally!)

Today marks the halfway point of the chemo. I have my mid way CT scan on Tuesday which will influence the way forward (I’m really worried about the scan but I guess this is how it’s going to be from now on. 

Not much has happened over the past few weeks which is why I haven’t written here for a while. I had all my hair cut off short and I don’t like it! (Other people say it’s nice though). It continues to thin, particularly on top.

Other than that the chemo symptoms have remained more or less the same with the addition of a sore mouth and eczema on my hands. I’ve been so knackered and wrapped up in my own illness that I haven’t given work a second thought (which is probably a good thing, but it does make me worried about going back).

I do feel as though my anxiety level have increased and that I have become very reliant on Andy being there as I get easily upset. But he has been keeping me busy helping him to source computer parts, which I’m getting good at. His boss has been really good letting him have time off to come with me to all my appointments. 

I’ve started following Bowel Cancer UK on Facebook and it is astounding how many younger people have similar stories to mine... GPs not listening or not acting upon clearly stated symptoms because we are “too young for bowel cancer”. On the 70th anniversary of the NHS I just feel very let down by the system.

Anyway, all there is to do now is wait for the scan results to find out where this journey will take me next.

Reflection

Everyone is on their own journey

This blog entry comes from The Grand Hotel in Torquay. Andy is back working for his previous employer and he’s down here working for the week, so I have come too for a change of scenery.

I’ve not written for a little while, as things have been rather quiet, but I have been doing a lot of reflection recently, plus there is news to tell...

First with the news. I can now (finally!) announce that my eighteen year old daughter is pregnant, due in November, so I’m going to be a grandmother at the grand old age of 40. I didn’t really need this additional drama in my life and, to be honest, nor does she, but, what is, is!

The second bit of news is that Andy has proposed! We had always said we wanted to marry eventually, but now the time seems right. After chemo, he took me for lunch at the pub where we first met, got down on one knee, nearly knocked the table over and then asked me to marry him! Obviously I said, “Yes!” So now I have a wedding to plan - Arrrgh! It’ll definitely be a very quiet, personal affair, so don’t go out buying hats or anything. We’re not going to set a date until after my CT scan in July, as the outcome will affect our plans. Whatever happens, I am happy.

Back to the reflection, the title of this post. I started chemo round three on Thursday and saw a few familiar faces of other people going through some form of chemo treatment (I can’t believe how many different treatmenst there are for all the different types of cancer). We all got talking and one of the ladies, who has had breast cancer, was feeling really low and said she had really been suffering with the chemo (she was moaning and complaining a lot!). She has lost most of her hair, which she has really coped with well and I admire her courage. I’m going to get mine cut short this week as it’s coming out in handfuls and becoming really thin - I’m petrified of doing it though! 

As I continued talking to this lady at the clinic, she revealed that they had managed to get all of her cancer out and that the chemo had been offered just as a preventative option. I actually felt jealous initially and I also felt slightly cross at how depressing she was being about how awful and hard going her chemo was. At least she has a more favourable prognosis; I have no choice and my cancer is highly likely to return! 

Since this moment, I have really spent quite a lot of time assimilating these feelings and, on reflection, have talked myself back round to the understanding (which actually I always had before I got ill) that everybody’s on their own journey, and everybody’s journey is different; you should not and cannot compare, because the way you perceive others’ journeys is just your perception- not theirs. The same with my daughter’s situation; we have to respect people’s life decisions because they are theirs to make. 

I also think, teachers have to grapple with this concept as we have a role and a duty to influence and shape our pupils to become the best they can be, but all we can do is guide them; they have to make their life choices for themselves.

Anyway, I’m rambling. Chemo round three is underway. The sickness is not so bad this time so far, but it’s early days. I’m gutted to have missed the annual drama of SATs week for the first time since qualifying as a teacher, but I know my staff will have ensured the children did their best. 

It’s very interesting being off work during term time. The shops are really quiet and it’s actually lovely to have no kids around. I’m now off to enjoy the spa! 😁

Back on the bike

Day 9 of chemo round 2 and generally much the same as the last time. Nausea has been worse than before and my hair has started to come out in handfuls (I have been assured it will not all fall out, it’ll just become thinner!). There’s no more news on the cancer front, so just need to continue on the chemo until the CT scan in July. As the fatigue seems to kick in during the afternoons, I’ve been using the mornings to clear out lots of the crap I’ve been hoarding for years, which has been quite liberating. ‘Chemo brain’ is kicking in though; I don’t seem to be able to concentrate on anything for very long, meaning there are lots of half-done things around the house at the moment (half renovated deck chairs, half finished sewing, half finished painting projects!). I guess they’ll get done eventually.

I’ve been very lucky to have lots of different friends visit me over the past weeks and that’s been fun. I never made enough time for catch ups with friends while I was working. You definitely need to ensure you make time rather than just always being too busy!

I also had the misfortune of bumping into my ex mother-in-law at the hospital, which was very awkward. I counted myself lucky though, because apparently I only missed my ex husband by a few minutes! I definitely don’t need that on top of everything else!

I’ve spoken to the big boss at county and have now accepted I won’t be able to return to work until at least October. It’s taken quite a lot to get my head around this, but my headteacher mentor visited the other day and made me realise that it really doesn’t matter because there is someone taking my place and keeping my school ticking over; it’ll be looked after and will still be there with all its highs and lows when I am able to return (Thanks Gill!).

Today I got back on my motorbike for the first time since my op. I haven’t been on the bike since last summer, as I’ve just been too ill to ride, so this was a big thing for me. I was really nervous that I wouldn’t be strong enough, but Andy made me do it (I probably wouldn’t have otherwise!). I’m so glad he did; I’d forgotten how good it feels to open the throttle on a clear road.

A Bad Day

“It is during our darkest moments that we must focus to see the light.” - Aristotle 

Just in case people start to think I walk around emanating positivity, I felt I should write about my day today.

The last 6 days I have been off the chemo drugs and I had begun to get my energy back. We’ve got lots of bits and bobs done around the house, which has been good. But today was day one of chemotherapy round 2. I prepped myself by looking back at the diary I have been keeping where I record any side effects and medication taken, so I knew I would have a painful arm and tingling sensation in my hands and feet as well as the hypersensitivity to cold.

The intravenous Oxaliplatin was really uncomfortable going into my vein, more so, I think, than last time. I got home and felt a bit yucky so rested for a while. Then I called the hospital to gets the results of my blood tests done two days ago. Now I’m still learning about what the blood test results mean, so I looked up the parameters for pre chemo bloods and found myself on the cancer research uk website. This showed me that I am still within the acceptable parameters for ‘normal’ bloods. My platelets have dropped but not too low, but otherwise numbers for white blood cells etc were more or less in line with the pre chemo bloods taken last time.

However, I then began clicking on links to other pages of the website specific to my type of cancer... big mistake! I started reading survival statistics (which my oncologist will not entertain, as he says we cannot predict life expectancy right now). I got myself really down and upset, even though I know they are statistics, averages, and even though I was already aware that the prognosis wasn’t great. I’ve spent the rest of the day randomly crying and needing to sort my head out. 

I’ll be ok tomorrow; it’s just one of those really down days! 😢

And I just want to add that I wouldn’t be able to deal with these days if it wasn’t for Andy, who seems to know when a hug/ an “it’s ok to cry.”/ a return to rational perspective/ a ‘just need to leave her alone’  is required (I don’t know how he does that when he is clearly having to assimilate the shit show that is currently our lives!).

Chemo Round One

So I started chemo a few weeks earlier than expected because the doctors deemed me well enough. The chemo I have been prescribed is Xelox, which is a combination of Oxaliplatin and Capecitabine delivered over eight consecutive 21 day cycles. Day one of chemo was on 19th April and involved the Oxaliplatin being pumped in intravenously over two hours. We were at the hospital all afternoon though because everything took ages (waiting for the pharmacy to dispense the drugs). It was quite an emotional moment when they connected the drip and started the pump. 

Days 2 to 15 are Capecitabine tablets to be taken twice a day. They also sent me home with anti sickness tablets and Loperamide (for diarrhoea) as well as a few days of steroids. Today is day thirteen and I feel I have been fairly lucky with the side effects so far, considering the massive list I was given of possible side effects. The two main side effects for me have been severe fatigue and hypersensitivity to cold things (I can’t hold things that have been in the fridge!). There has been some diarrhoea, nausea, thrush and numbness/tingling in my hands and feet, but otherwise I’ve been ok.

Due to the drugs, my immune system is not functioning properly, so I have to avoid possible sources of infection. We’ve had to become an ultra clean house, so antibacterial soaps and sprays and paper towels rather than hand towels. I’m not allowed near ill people and have been advised to avoid crowded places. There’s also a big list of stuff I can’t eat, which sadly includes blue cheese, undercooked steak, shellfish and Mr Whippy ice cream!

Days 15 to 21 are drug free, so I’ll have to wait and see if the side effects subside before beginning the whole cycle again.

Also, my oncologist received a response from Basingstoke Hospital a couple of weeks ago. They’ve asked for further tests to be done, but they did also say they had looked at my pre and post op scans and noted a ‘solitary omental nodule’ (a spot on my peritoneum) on my post op scan that wasn’t there in the pre op scan. The oncologist says we will just be keeping an eye on it for now. They are planning to do the next CT scan three months into chemo.

A Blow to the Head

“Sometimes life's going to hit you in the head with a brick. Don't lose faith.”  -Steve Jobs

The day of the oncology appointment had finally arrived so we could find out the way forward. I was still an inpatient at the hospital following the 999 saga, so Andy wheeled me down to outpatients to see my surgeon first and then the oncologist. This was much to the disgust of the hospital staff, who like to keep inpatients and outpatients separate; I was asked several times if I was in the right place sat in the waiting room in my pyjamas!

What came next was an absolute blow to the head. We were told that the cancer was the worst and most aggressive form of cancer there is (T4b, N2b, M1c, EMVI positive grade 3 adenocarcinoma of the splenic fracture - for those of you who know about these things) and that it is incurable and the chance of recurrence is extremely high. They plan to carry out a six month chemotherapy treatment comprising of Oxaliplatin and Capecitabine in an attempt to keep control over the disease and have also made a referral to Basingstoke hospital, which is a centre of excellence for this type of cancer, to seek their advice.

My first reaction was, “But what about work! I can’t have that much time off!” Apparently this is not an appropriate thing to be worrying about when you have just been diagnosed with stage 4 bowel cancer; that’s what my friends, family and colleagues say anyway! 😜

The staff in the Macmillan unit were fantastic, especially when we came out of the consultation room and, thinking the corridor was empty, I said rather loudly, “We’ll that’s just fucking shit isn’t it?” and then burst into tears. A nurse appeared from nowhere and ushered us into a quiet room.

This was the day I stopped believing in karma. The concept of karma has got me through some of the darkest times in my life and it has served me well as a crutch to get my head out of negative spirals when things seemed so unfair. But the really bad things that have happened to me before could almost always be blamed on someone else, allowing the karma concept to work for me; it doesn’t work for cancer...I’ve never done anything that bad!

Chemo was due to start in two months to give me a chance to recover enough from the op.

999

A spanner in the works

So, home from hospital and my only job was to heal from the op... boorrring! Andy had to go back to work because he had had so much time off, so I was mostly home alone. I spent a lot of time reading novels and sleeping.

The district nurse had been round and removed the staples from my wound and the stoma nurse was coming weekly to check on me too. 

In general, although each day things were getting better, I was still in pain and quite uncomfortable. On day 19 post op, I was in agony in my tummy. At first I thought it was just the normal trapped wind or post op pain, but it continued through the night until eventually I conceded and Andy called an ambulance because I was in so much pain, I didn’t feel I could travel in the car. The 999 operator took down all of the details and told Andy that someone would call back within two hours. As it was about 2am, Andy told me to try to get some sleep. I had taken the maximum doses of morphine and paracetamol and must’ve dozed off because the next thing I knew there was an ambulance in the driveway and two paramedics knocking on the door. It’s quite surreal having paramedics in your bedroom at 4am, hooking you up to all sorts of machinery! Anyway, they said we had done the right thing by calling and decided to take me in. 

When I arrived at A and E, they pumped me full of morphine again and arranged for a CT scan. My bloods showed that my inflammatory markers were high, but the scan showed no sign of infection. The pain became more intermittent and they kept me in overnight for observation, but no real reason was given for the flair up.

The Surgery

 “One is never afraid of the unknown; one is afraid of the known coming to an end.” Jiddu Krishnamurti

The two days running up to the surgery were a complete blur...nil by mouth and high on morphine (and god know what other drugs they were pumping into me). The histology from the biopsies came back and confirmed I had bowel cancer. The consultant said the scan seemed to show that the tumour was only attached to the bowel, so removal should be pretty straight forward. My knowledge about cancer at this point was zero as you have to go back to my great grandparents before you find any history of cancer in my family, so I just had to trust that everything the medical professionals were doing was right. 

The day of surgery arrived and I didn’t go in for prep until reasonably late in the day... about 4pm I think. I had never had a general anaesthetic before and the only operation I have had was a cesaerian section when I had Beth 18 years ago. I was scared. Being wheeled in to the theatres, I was convinced that my time was up and today was the day I was going to die. When they put me under, I was crying. 

When I came round, I looked around, disorientated and I remember my first thought was wtf has just happened. I slowly began to take everything in. “I’m still here, alive! What the hell is that thing in my nose! I can’t actually move! Where’s Andy?”

I don’t know how long it was before Andy came and then I was moved to the critical care unit. I don’t remember much about that place, but I remember being hooked up to loads of machines and it felt like I was on an alien spaceship.

It turned out the surgery had been much more extensive than originally anticipated and they had found that the tumour was, in fact, joined onto some of my other organs. They had not only removed part of my colon, but also about 20% of my stomach, part of my pancreas and one of the main blood vessels to my spleen. The surgery had taken much longer than expected and poor Andy had to just sit and wait, worrying it had all gone wrong.

Back on the ward, I began to realise the extent of what I had just been through. I had a drain tube going into my left side, a catheter, numerous lines in through a cannula and a tube in my nose which had a bag on the end (that was horrendous and I just wanted it out! Apparently it was to drain my stomach while it healed). I hadn’t even known about the stoma... didn’t even know what one was and now I had one! 

I wasn’t allowed to eat or drink anything for days...just sips of water to moisten my throat. My skin became really dry and bumpy. You could see the amount of weight I had lost (now 3 and a half stone) by the baggy skin on my arms and legs. I didn’t know how I was surviving on intravenous fluids alone and no nourishment, but apparently you can. I had many visitors and we had a good laugh to divert the focus away from the horrendous things that had just happened to my body; the concept of me having two bum holes became a source of hilarity one day when both my kids and their respective partners visited (much to the scorn of the nurses, haha!). It is a bit of weird tradition for people to come and visit you in hospital to see you looking like shit and at the lowest point you can be though isn’t it? A bit like a freak show!

Within a couple of days, they wanted to get me out of bed to stand up. I was convinced that there was no way I could stand up in my condition. In my head I was thinking, “Are you insane? Can’t you see what I look like? I’m not ready to stand up... come back in a week or so!” Anyway, you do as your told, don’t you? I couldn’t have them saying I couldn’t do something they’d asked me to do! So, feeling like utter shit, and with the help of two nurses holding me and all my tube and bags... I stood up.

Each day they made me so a little bit more: walk to the chair... sit down for 10 minutes... sit for 20 minutes... get yourself in and out of they bed without help. I hated it, but you do it anyway because you don’t want anyone thinking you can’t. 

Next they removed the catheter, so I had no choice but to get myself out of bed to go to the toilet, wheeling my drip stand and carrying all my drainage bags. It was really hard. Gradually, as the days went on I walked a little further each day, and lines and tubes began being removed. My planned discharge date was the Monday (day 11 post op), but due to my progress (and the fact that I live in an accessible bungalow) this was brought forward to the Friday. Then on the Thursday before I was due to be discharged, the doctor asked me if I wanted to go home today. It turned out it was because they needed the bed. We were still waiting on the hospital pharmacy to sort out my meds to go home so we were asked if we would mind waiting in the ‘discharge lounge’ so they could have the bed. 

I was pushed in a wheelchair all the way to the other side of Ipswich Hospital to this so called ‘discharge lounge’. Basically it’s like a bus/train station waiting room and, bearing in mind I hadn’t been able to sit in a chair for more than 30 minutes on the ward without then having to lay down, a completely unsuitable place for me to be left to wait. It was just ridiculous! The lovely nurse in the discharge lounge, realising this was a big problem for me, began chasing the meds from the pharmacy, who told her that it would be at least an hour. I began to cry because I knew I couldn’t sit in a chair for that long. Andy decided that the only option was to take me home and come back for the meds later (a 2 hour round trip)! Even when he went back, they had mucked up the meds and he had to wait around while they sorted it out. It was such a shame to end my stay at the hospital with such a horrible experience, because up until that point, all of the staff had been fantastic.

Once home and with all of the meds I needed, it was a three week wait before the histology report would be back and a way forward would be decided. Three weeks of limbo... and pain...and lots of morphine and paracetamol.

The Diagnosis

“The best laid schemes o' mice an' men gang aft agle” 

Robert Burns

I had been known amongst colleagues for my cough for a few years. They knew it was me coming down the corridor; they could tell by my cough. I’d had different antibiotics and chest X-rays when it got bad, but generally it would clear up and go away for a couple of months or so. I even broke two ribs in 2011 from coughing! Little did I know that this was to be an early indicator of my illness.

I’d also been having stomach issues for a few months, so was exploring food intolerances and allergies. I tested negative for coeliac disease, though I was finding that a gluten free diet seemed to help somewhat with my tummy pain issues. I also became very interested in food combining (introduced to me by Granville). This also appeared to alleviate some of the symptoms. The doctors put me on Mebeverine tablets which I’m not really sure ever made any difference, but I took them anyway.

Our holiday in Gran Canaria in Summer 2017 was when the coughing became really bad, hacking and continuous. That’s when Andy sent me to the doctors. I went through the rigmarole again of antibiotics, chest X-rays etc. But after weeks of tablets and tests, they couldn’t find anything. They decided it could be silent reflux, so they put me on Lanzoprazole.

I started my first headship in September and not long after, the stomach pain started to get worse. Initially I put it down to the stress of the new job because I couldn’t pin down any particular food causing it. I began losing weight. I went back to the doctors (I hadn’t really stopped going back, it felt like I needed 3-weekly appointments booked in advance). They referred me for an ultrasound, which came back fine, so then they referred me for a gastroscopy (at the time one of the most horrendous experiences of my life!). The gastroscopy showed I had gastritis and oesophagitis but also some bile in my stomach. They upped my dosage of Lanzoprazole and told me to take Gaviscon as well. They advised I ate soft, plain food to avoid irritating the gastritis and let it heal.

Over the next few weeks and months I lost more weight, the abdominal pains were getting worse and worse and sometimes I was coughing until I was sick. I was seeing a doctor every 2-3 weeks but felt like I was being fobbed off. Anti sickness tablets were prescribed but didn’t really work. Codeine was given to cope with the pain. By this point I had lost about two and a half stone and couldn’t stomach much...not even alcohol!

By January, I had started to have night sweats and hot and cold flushes, so the doctors shifted their focus towards early menopause for a while. By mid January, the pain was becoming unbearable. I saw a doctor and told him I could feel a lump in my abdomen . He decided there might be a blockage in my bowl so a higher dosage of codeine was prescribed for the pain and Movicol for the constipation. This didn’t work so I went back and saw a nurse practitioner who agreed she could feel the lump too and brought a doctor into the room to confirm this. I was then referred for another ultrasound and also a colonoscopy.  The ultrasound again was clear (as they “Only look at kidneys and the reproductive organs, not the bowels” I was rudely told by the sonographer). The referral for a colonoscopy got lost in the system!

So after I chased up and got re-referred to the hospital for a colorectal appointment on 7th February this year, the consultant immediately arranged a CT scan. By the 9th February, the consultant had called me saying there was a large lump which could be an abscess but most likely a lymphoma. He sent the scan to the Royal Marsden for a second opinion before deciding on the way forward.

This was the first time a cancer had even been mentioned. I was in so much pain I had been put on slow release morphine and oramorph and signed myself off sick. We just clung onto the hope that it was an abscess and not cancer.

I received an appointment for a sigmoidoscopy (like a colonoscopy but exploring a specific part of the colon). However, in preparation for this procedure, I was sent sachets of a drink I had to make up with water and take at regular intervals over the two days before the procedure (bearing in mind that by this stage I couldn’t even keep much fluid down and was vomiting 3-4 times a day). This evil liquid not only tasted disgusting, but gave me the shits for the whole weekend! This experience definitely outstripped the gastroscopy in the ‘most horrendous experience’ tables!

So, on Monday 26th February, I woke up in so much pain that I couldn’t even move. I called the hospital to say I was not sure I could even get in the car to come and have the procedure and that we may need to go to A and E instead. They advised I took some more morphine and come in straight away as A and E would only delay the process. Luckily I was able to get into the car and get to the hospital (with Andy’s help of course, as I hadn’t been able to drive for at least a week by this point due to the morphine dose I was on). They carried out the procedure and took biopsies which confirmed that it was definitely cancer. They admitted me to hospital the same day.

The following day (Tuesday), I was told that they would be operating to remove the tumour on Thursday...