Skip to main content

Cancer Survivor Story

Cancer doesn't end when chemo does. End of treatment.

Cancer Doesn’t End When Chemo Does


Ryan finished his chemotherapy treatment on his brother's 18th birthday in May 2017. The last two years and eight months were a blur of stress. Yet coming to the end of treatment coincided perfectly with Cancer Survivors Day on the first Sunday in June, each year, so what better way to mark this day than with our own survivor story.

Ryan's weight at diagnosis was a staggeringly poor 42kg. He had lost so much weight not being physically able to eat due to the tumour in his throat, but with thanks to his own determination and the feeding tube that he had. Ryan's weight as we start his final chemo cycle....drum roll....prepare yourselves.... was an amazing 57kg. A year on in 2018 and despite going through treatment for the second time after relapse. Ryan weighs an impressive 65kg.

SMILE Chemotherapy Cycle: End of Cancer Treatment

Chemotherapy Cycle six

Started on Monday, 1 May 2017 for hydration and the week went well without any drama. His final chemo took place on Friday, 5 May which also happens to be my oldest son’s 18th Birthday. We did discuss whether or not we should try and change the date so that it wasn't on Owen’s birthday but we wanted to not have another week of chemo hanging over our heads and Owen was happy to get it done and out the way so we decided to keep it to the same dates and have a double celebration. Owen and his girlfriend drove across South Wales to meet us in Cardiff, spending time with Ryan on the ward, before Dadi Skilts and I took Owen and his girlfriend for a cheeky Nando’s down at Cardiff Bay. On Wednesday 3rd May 2017, Ry had complained of jaw pain. The doctor wanted an x-ray as the steroids Ryan is on can cause problems. I went with her hunch as she is rarely wrong and she was the one that had thought to do the random blood monitor that led to the adrenal diagnosis. The Doctors were very quick to come back to us to discuss the results...ready for it… His wisdom teeth are coming through. Sorry to scare you but even the docs giggled as it was nice for them they said to not have to give bad news for once. Although in all seriousness he is at a slight risk of infection as they break through, so needs to be extra careful with oral care. Ryan was clearly eager to get chemo well and truly behind him. Not only did he clear his chemo levels a day earlier than he has ever done so previously, but the post-chemo blood levels were also the second-best discharge blood levels he has ever had.

Maintenance

We were expecting maintenance would be between two and three years and although that was slightly longer than I was expecting I know that maintenance won't be as hard going as the chemo course and at least we get to be home for few weeks, for him to recover his blood count after chemo before we begin talking about a maintenance plan. Then on 18 May, I received the most surreal phone call from oncology. Ryan doesn't need any maintenance. His treatment is over. We have been discharged. He can go back to school. I could barely speak down the phone as I tried to process the news. A nurse will come to take out his PEG tube at home and our local hospital will arrange a day operation to have his Hickman line removed. We don't ever have to go to TCT again. The reason they had said 2 years is because they had assumed it would be the same as Leukaemia, but they have received confirmation from Japan that SMILE is different. Ryan had aggressive cancer, that required aggressive treatment, but it is now done. Finished. Over.  I could not believe it. However, this welcomed shock was to be short-lived when Ryan relapsed just three months later and began three years of Immunotherapy treatment called Pembrolizumab. The nurse came out on 22 May to remove the feeding tube from his stomach, but it made Ryan quite sick so we had to double dose his hydrocortisone meds, but he was still being sick again on the following morning, so I took him straight to Carmarthen hospital as I did not want it to get to the point where he went into adrenal crisis.  The doctors ran some tests and he had several hours of observations before the medics were happy that it was a Gastric irritation after the removal rather than any problem with his adrenals. The following link is a really useful article the discusses When your Child’s Treatment Ends. It has detailed advice for coping with trying to adjust back to some sort of normality post-cancer.



Cancer Chapter, Not Story www.bellybuttonpanda.co.uk

Maintenance

We were expecting maintenance would be between two and three years and although that was slightly longer than I was expecting I know that maintenance won't be as hard going as the chemo course and at least we get to be home for few weeks, for him to recover his blood count after chemo before we begin talk about maintenance plan.

Then on 18 May I received the most surreal phone call from oncology. Ryan doesn't need any maintenance. His treatment is over. We have been discharged. He can go back to school. I could barely speak down the phone as I tried to process the news. A nurse will come to take out his PeG tube at home and our local hospital will arrange a day operation to have his hickman line removed. We don't ever have to go to TCT again.
The reason they had said 2 years is because they had assumed it would be the same as the Leukemias, but they have received confirmation from Japan that SMILE is different. Ryan had an aggressive cancer, that required an aggressive treatment, but it is now done. Finished. Over.  I can't believe it.


Cancer Survivor www.bellybuttonpanda.co.uk

Cancer Doesn’t End When Chemo Does

The nurse came out on 22 May to remove the feeding tube from his stomach, but it made Ryan quite sick so we had to double dose is hydrocortisone meds, but he was still being sick again on the Wednesday morning, so I took him straight to Carmarthen hospital as I didn't want it to get to the point where he went into adrenal crisis.  The docs ran some test and he had several hours of obs before the medics were happy that it was a Gastric irritation after the removal rather than any problem with this adrenals.

The following link is a really useful article the discusses When your Child’s Treatment Ends. It has detailed advice for coping with trying to adjust back to some sort of normality post cancer.

Latch Welsh Children's Cancer Charity.

On a more positive point I am honoured to have been asked by my friend Emma to help her promote her Ironman Challenge for Latch Cancer Charity on behalf of Ryan.
Emma has supported Ryan educationally for many years as Autism Advisory Teacher for Carmarthenshire and in 2017 she supported him on his cancer journey by competing in the Ironman triathlon which includes swimming 2.4 miles, cycling 112 miles and running a 26.2 mile marathon all of which has to be completed within 17 hours.
Please see Emma's Just Giving page for more details on the Ironman Challenge and how you can donate to LATCH.

The South Wales Guardian also picked up Emma's Latch fundraising and wrote a feature on her and Ryan.

Thank you all so much for all your support. 💜

Comments

  1. Wow I cant even begin to imagine how these years have been for you and what you and your family have had to deal with. Yet it seems like Ry is a true fighter and his strength and determination has got him thorough this. Its not the end and it's not over bu like you said he can begin to go back to school and be at home with his friends and family! Well done guys. Much love to you all! x
    Such a positive post - Like you said school does not matter in retrospect - kids dont understand and can be mean! But look how you have blossomed and become a unique amazing human being! x
    Lola Mia // www.lolitabonita.co.uk

    ReplyDelete
    Replies
    1. Lolita, this has been to be one of the nicest comments we have had on this blog. Thank you so much for commenting and with such lovely, kind words. Ryan is a fighter and we are slowly beginning to look forward to the future once again. x

      Delete
  2. Informative as ever. Your perception is amazing xxxx

    ReplyDelete
    Replies
    1. Thank you. Such kind words. We hope to help at least one person who maybe experiencing a similar journey.

      Delete
  3. Much much love and all my good thoughts for you and your family.You are all so strong!I wish a bright future from now on with good health and many smiles. All the best truthfully from my heart :)

    ReplyDelete
    Replies
    1. What a lovely comment, thank you. Ry is in hospital for a couple of days as he has picked up a bug, but doing well on the antibiotics. I absolutely love our NHS. All the best to you too.

      MS x

      Delete
  4. This comment has been removed by a blog administrator.

    ReplyDelete
  5. Great Information sharing .. I am very happy to read this article .. thanks for giving us go through info.Fantastic nice. I appreciate this post. https://s3-us-west-2.amazonaws.com/hope4cancerreviews/index.html Hope4Cancer Reviews

    ReplyDelete

Post a Comment

Thanks for your comment. We appreciate having you along for the ride.

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c

Worrying About the Future

  Worrying About the Future. Ryan said to me recently. "Childhood gave me Autism. My teens gave me cancer. What will adulthood bring?" Big worries for someone so young. So much pressure and conditioning are placed upon us about the importance of education and the set path that the majority of us will take through the system to university and/or the job market. What happens if you do not follow that path or miss so much education that the path is no longer open to you. How do you plan for the future? What options are there available to you? Ryan was excluded from his primary school in year 2 and I home schooled him for a year while we worked with the Educational Psychologist to find a placement that would suit his complex needs at the time. Due to his speech, language and communication difficulties the decision was made to withdraw him from Welsh-medium education and focus on English only which meant our choices were limited in the area of Wales that we call home. We

Chemotherapy Cycle 5

What is Normal? With this being our penultimate cycle of chemotherapy I have had several family and friends comment to me “oh I bet you can't wait to get back to normal”. This has really thrown and upset me because it seems to come across that they have failed to comprehend the fact that we have 2-3 years of maintenance ahead and at least two more general anaesthetic surgeries. Not to mention physiotherapy as it is expected Ryan will take 12+ months to heal from the effects of being poisoned from the inside out. Normal is long way off yet. While everyone else appears to all be getting excited that Ryan is coming to an end of his chemotherapy protocol treatment, Ryan himself is becoming more and more tired with the cumulative effect of the onslaught of the chemotherapy drugs and is spending long periods of time in hospital after each cycle with infections due to his impaired immune system now as a result. Ryan is far from excited. Ryan is exhausted. We still have one more cycle t