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.