Transplant

I haven't posted in a while so I thought I would post and let you all know how my stem cell transplant went!

So, I finally achieved partial remission which means the tumour had shrunk enough for transplant ready for the chemo and my healthy cells to make me cancer free completely! As I was only in partial remission rather than complete remission the chances of success are 30-50% (but they said the last chemo was only 20% and that worked!)

I had an autologous transplant which means I had my own stem cells put transplanted back into my body. This is done by putting my healthy cells back in as an infusion through the central or hickman line. Firstly though you have 6 days of gruelling chemotherapy, a higher dose than I had ever had before. This chemo is called BEAM.

In transplant world, the days are worked out with day 0 being transplant day (my re birth as we call it), so I was admitted on day -7 ready for chemo to start the next day.

I don't remember too much about the first week of chemo as I was so anxious before hand I was given so many anti anxiety meds it knocked me out! Luckily for me even though I had been admitted, I was allowed to leave the ward and even pop home for a few hours for a couple of days until my blood count dropped and I needed to be in isolation.

Most people loose a lot of weight during transplant because of horrible side effects of the chemo, because of this I was given a nasal feeding tube - the worst thing I have ever ever had! This was inserted the morning of transplant so I spent most of the day gagging and being sick!

Again I don't remember much about transplant day other than the most strong sell of corn on the cob ever, I stank of it for days! Put off for life now.

The days following were basically spent asleep and not doing a lot, I felt fine though until around day +9 where my counts dropped to 0. I had some blood and platelet transfusions and was in isolation however I had nutropenic sepsis, an extremely high temperature and a heart rate of 188. I felt like I was dying. Getting out of bed was a no go and being awake for more than a few hours was impossible! I lost my hair for the 3rd time and had oxygen tubes, feeding tubes, syringe drivers and my other lines coming out of me. It was not a pretty sight!

However day +14 came and my bloods had started to come up my temperature had gone and the doctors were keen for me to go home. This was scary for all of us! Excited but terrified! The next day I was set to go home (after Jack and Cameron spent about 2 hours clearing the room out!). I was so happy to be home and recovering in my own space.

For the first week I wasn't really able to do anything, walking up and down stairs was torture and I spent all my time on the sofa with my poor mum and Jack running around after me. As the weeks when on I improved very quickly along with my blood count.

I am now thriving, still feeling tired and my legs aren't what they used to be but I'm alive and well!!

My scan will be in the next 2 weeks and we will find out if transplant was successful.

Day to day life with Cancer

Living daily life can be very hard.

Sometimes I can feel very sad, angry, stressed and disappointed. Other times I can feel on top of the world, confident and positive! Its a battle each morning to which emotions are going to come out on that articular day.

I often feel jealous of people having babies, getting married, moving house or generally moving on with their lives whereas we can be stuck unable to move anywhere for sometimes a very long time. It's very difficult financially which makes going out with friends quite hard too, and along with low white blood cells this can make us feel very isolated.

I am extremely lucky and I have a massive support network of friends, family, work colleagues and of course my lymphomies, this helps me ignore the bad and concentrate on the good more often than not.

Everyone is entitled to bad or down days but its so important to remember we are so much more than cancer patients. We have been given a second chance at life and that's what we all need to live for. I know it sounds cliché but life really is too short to second question anything, or stress about the most insignificant things in life!

I for one, am grateful of the attitude cancer has given me, live more and better!

Chemotherapy

I was thinking that some of you may not actually know what happens when you go to receive the infusion of chemotherapy or what its like, so I thought I would hopefully shed a little light!

The room itself is basically a massive room split into 3 sections with a little side room. The rooms are filled with snazzy green armchairs each with a pump next to the chair. The sections are called bays, and 2 or 3 nurses are in charge of the 6 or so patients in that bay. The little side room has a TV in it and a bed like they have at the doctors surgery.

On the day you sign it at reception and go down to Room 10 (chemo room)the nurses tell you which bay you're in and then you wait, sometimes for 10 minutes sometimes for 5 hours! The room has volunteers who make tea and coffee, lunches and even massages so there is ways to pass the time while you're waiting.

The chemo its self is given through a vein, so will either use a line, post or a cannula. They always run a bag of saline along with the chemo too. Depending on the chemo you have will depend on pre meds. For the ABVD I had bags on anti sickness before the chemo could start and the same with the ICE, for this current chemo they literally go straight for the drug, there is no pre meds.

The timing chemo takes depends again on the chemo you receive, ABVD took around 5 hours and was done as an outpatient in the chemo room, ICE was give over 5 days as an inpatient on the ward, and Brent is given over 30 minutes as an outpatient.

The nurses are fab and check on you every 5 minutes and do their best to stop any side effect or anxiety and make you as comfy as possible for the duration of time you're there.

After the infusion, you more than often have to wait for pharmacy to give you the meds to take at home after chemo, and book yourself in for bloods, clinics and the next round of chemo!

It isn't a particularly nice thing to have to do but as chemo goes on you really do get used to it and becomes part of your new life!

Lymphoma Family

Some of you may have noticed that I'm pretty much always yabbering on with my lymphomies or using the #lymphomies so I thought I would tell you about them and what they are!

So basically, these people are living breathing angels - expect for our 2 real life angels who are above. In my entire life I have never known such selfless, kind, caring and genuine people.

The support we all have from each other is unexplainable, it makes everything so much easier when people really understand what you're talking about when it comes to the drugs, cancer or life after cancer. We can go to one another with questions, concerns, worries, good or bad news, updates or just day to day shit.

The family are dotted all around the word, I'm lucky enough to have met one of our family and facetimed others, but as we keep saying one day we WILL all meet up finally. Its a very surreal feeling that I have this massive amount of best friends and people I truly do love dearly and we know so much about each other yet we've never met!

Every day these people make my heart smile, I hate cancer, more than I can ever say but its bought me this amazing family ad for that I'll be forever grateful.

The latest update

So, I went to see my new consultant a couple of days ago and he filled us with more information than I thought was possible! The consultant was extremely informative and in control ad this made me feel veyr safe.

He said the tumour seems to be chemo immune where the treatment works for the first part and the fights back. To cure this they normally use radiotherapy, but as I have already had that  and it didn't work, this is quite worrying.

I am to continue on the brentuximab as planned and then have another scan to determine the next step of treatment, the doctor was very honest and said he isn't expecting this drug to work but you never know, its about time I had some good luck!

The next treatment will depend fully on the results of the scan, but could be a clinical trial, or transplant with a lower success rate before I go on to use a donor for a transplant. Using a donor is risky for rejection and can be very dangerous but it has the higher success rate out of the 2 and at this point I'm willing to do anything!

This news has hit us hard as we expected it to all be over in a few months and it could now take a lot longer but we will continue to fight together and get through this.

For now, everyone keep your fingers and toes crossed for a miracle that this treatment works and I can have my own cells as planned in the near future!!

ICE chemo

The salvage chemo I was put on is called ICE. I was to have 3 infusions over a week every 3 weeks.

The first round I had, I had my hickmann line inserted. This is a small tube that goes in the chest and up into a vein in the neck. I have 2 long tubes that come out of the skin. its very tolerable just hating I cant have a deep bath!

I tolerated the ICE chemo much better than the ABVD. The worst part was spending a week in hospital, although with all the drugs they gave me I don't really remember it. Just that the ward staff are literally living angels!

For the week after chemo I was very weak and spent the majority of the time laying on the sofa and needed help doing pretty much anything, but by the weeks after I felt better than ever. Being nutropenic wasn't much fun though.

I had a scan mid chemo and it looked like the tumour was responding really really well and the team were confident that I would be in complete remission ready for transplant.

I went on to have my 3rd round of ICE. It was more difficult this time as I was on a bay rather than a side room and the patient opposite me was dying of the same cancer I had, I found that very tough but luckily the angel nurses found me a side room for the remainder of the stay.

After my final scan, the results weren't what we imagined they would be. The tumour had become more active while I was having the chemo, this was very worrying for myself, family, friends and my medical team. I was to see a specialist consultant and start on a new treatment called Brentuximab.

Relapse

From about August 2015 I hadn't felt right and had gone to see a couple of consultants with the worry that I had relapsed, both of the doctors put this down to anxiety and took some blood tests.

by December the symptoms were getting worse and some new ones had appeared, I knew this wasn't anxiety but I couldn't get them to listen to me and carry out a scan.
As far as the doctors were concerned they couldn't feel any more lumps or bumps, but I was worried about what was going on with the tumour I had in my chest.

Finally in March 2016 I saw my oncologist who had decided on the radiotherapy, I explained my concerns to him and thank goodness he requested a scan!

A few weeks later I was called back in to the Cancer Care Unit and surprise surprise I had relapsed. The tumour in y chest had grown as big as my heart, and some lymphnodes had flagged up in my lung. I was to start high dose salvage chemo and then to go on and have a stem cell transplant, using my own cells.