Skip to main content

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 to get through, but Ryan is already worrying about cancer coming back. He says it will be ‘just his luck’ after all the other problems he has faced in his short life. He is so worried in fact that he asked me in the car the other day if he would be allowed to refuse treatment if it does come back. I can not even describe to you the heartbreak that gave me. Home schooling was finally agreed to start in March 2017, but Ryan was ambulanced to Cardiff on the day that it should have begun with his Adrenal Insufficiency crisis, so has yet to start with the home-school tutor. Missing an entire year of school is an issue and dilemma that we will also have to face before life can ‘get back to normal’. Do we put Ryan back a year, into an unknown cohort of peers that have already settled and made their friendship groups or do we keep Ryan in the same school year with his friendship group, but not enter him for any GCSE’s as he has missed too much work now to be able to catch up? I will discuss the topic of Missing Education due to illness in a separate post. Ryan was anaemic when he was discharged from hospital at the end of chemo cycle 5 and we only got to spend two nights at home before he was then admitted to our local hospital on the third night with vomiting, a temperature of 39.1C and rigors. Not quite as impressive as the Adrenal Crisis of 40.1C, but still up there in his top 3.

Blood Transfusion

His anaemia had worsened as expected so he was given his first-ever blood transfusion. His blood group is the same as mine A+, he said that is the highest mark he will ever get on any test in his life. Nice to see his sense of humour hasn’t diminished.

The timings of his admission however and the need to have 10 days of IV antibiotics meant that we got to spend Easter in the hospital which transpired to have its benefits as Ryan was inundated with chocolate eggs and treats and I treated him to a McDonald's double sausage and egg muffin every morning to help with the calories. The timings of chemotherapy cycle 6 are such that Ryan’s final chemotherapy will be given on his older brother Owen’s 18th birthday. Owen is, therefore, travelling to Cardiff that day with his girlfriend to have a party on the Teenage Cancer Trust ward and then we will treat him and his partner Ffion to a cheeky Nandos in Cardiff Bay which is something to look forward to. Since being discharged from Carmarthen hospital I have got myself somewhat more organised and now make Ryan homemade double sausage and egg muffins every morning to aid his recovery and weight gain.





Comments

  1. Anon1 May 2017 at 02:14

    Something about "...light at the end....." but sometimes it seems the train hasn't even got to the tunnel. Love to all xxxxx.

    ReplyDelete
    Replies
    1. @SarahLou1 May 2017 at 11:38

      That or the light you can see is in fact the train heading straight for you. I am sure the skies will clear soon and we will be out in the sunshine once more.

      Delete
  2. Rosalie Markovics12 May 2017 at 08:08

    I loved his sense of humour! A long journey for you. Thank you for giving me your link- if you are interested, my autism link to my blog is https://teachingautismblog.wixsite.com/teaching-and-autism and reflects my experiences teaching students with autism.

    ReplyDelete
    Replies
    1. @SarahLou12 May 2017 at 08:17

      Thank you for engaging Rosalie. I have snuck in his sense of humour as much as I can throughout this blog. He does have his support teacher and the nurses in giggles to be fair, although he can be quite dark with it at times. I have checked out your site and will contact you about collaboration. x

      Delete
  3. Unknown3 August 2017 at 15:11

    This comment has been removed by a blog administrator.

    ReplyDelete
  4. Ronald Veltri23 September 2017 at 21:36

    Nice blog post

    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
11 comments
Read more

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
5 comments
Read more

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
Post a Comment
Read more

Peritonitis

Emergency Surgery On the morning of 25 October 2016 Ryan was complaining that his PEG feeding tube was unbearably painful. He was due for a review anyway that day at Velindre Cancer Centre and a PEG specialist nurse came for to look at Ryan. She said the site was a bit weepy and raw, she thinks he possibly caught or pulled it in the night. She is confident that it is fine and she also gave it another good clean.  A week on and we are back to square one. The district nurse came out on Monday 31 October 2016 to advance (turn) the PEG tube as is needed each week after the first month. The nurse was unable to move the disc and caused Ryan an incredible amount of pain. We ended up having to go to the Teenage Cancer Trust ward in Cardiff, where two gastro nurses met us and spent the best part of an hour, torturing Ryan while they 'forced' the PEG to move, which they eventually did. Or so they thought.  The following week, 7 November 2016, the district Nurse came again to the h
7 comments
Read more