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.