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.