Holidays and swimming

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Hello All,

How accommodating has your MDT been over treatment breaks for holidays? Because my husband agreed to take part in a clinical trial, there seems to be some push back over us going away in January for a week we booked earlier this year, back in March.

Another tension has arisen because Rod was advised by the nurses to get the PICC line replaced with a port so he can go swimming, his favourite exercise. The oncologist told him he still risks infection so shouldn't go swimming, even if she agrees to the port.

Any similar experiences or advice, please?

TIA,

Lorraine

  • I only have a view from Clinical Trial perspective.

    it MAY be the case that your MTD are aware that if the Principal Investigator considers the absence would jeopardise the integrity of the study there might be an implication on eligibility. 

  • That's helpful to know, Rosie. Thank you. I see from your profile that you have very relevant experience in the field of clinical research. Amazing work! 

  • Hi Lorraine

    As I mentioned in my other post Dal has had a port fitted since Jan 2021, once the port is healed after the insertion Rod should not have any issues swimming, but I suppose if you were looking for the port to be fitted before you go away in January, then there may not be enough healing time for swimming to be possible.

    When Dal started on his trial we advised that we had a holiday booked, and even offered to cancel, but was told "No, you go on your holiday". Again as I mentioned in my last post, if someone is unwell on their infusion week, they have a work around for that, so it should be no different for a pre-booked holiday. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Thank you, Lowe. I've just read your other post. It's helpful and reassuring to know that we have a good case to argue. Rod is really noticing the fatigue now he's into his 4th week of treatment, but is accepting that it's okay to have a nap when needed. 

    How is Dal doing? Has another treatment started? Sorry to ask so many questions but I also saw in a couple of your posts that you are using alternatives while the medical treatment is unavailable. Some sort of mushroom was mentioned. Could you tell me more about these, please? I have a friend going through treatment for breast cancer who recommended pure vitamin c and my stepson urged his Dad to try an alkaline diet. 

    Thank you for your ongoing support for everyone, including us.

    You are a wonderful person.

    Lorraine xxx

  • Hi Lorraine,  

    Dal will have a CT scan on Thursday for his SBRT markings, he has also been asked to take part in a new trial for different take on MRI scanning, so it will be quite a long day.  Then we wait for the appointment for the start of the Radiotherapy, overall Dal is very well, thank you for asking. 

    With regards to the mushrooms, Dal takes Turkey Tail Mushroom capsules, but of course there is just powder, instead of capsules, which can be added to drinks or formula's.

    For a few years Dal was taking 2 x 1200mg whilst having immunotherapy, and continued when he was moved onto the trial in March, but when treatment stopped in May, Dal started to take 4 x in the morning and the evening, It is not for me to say that these are the answer to anyone's prayers, but all we know is how well Dal has managed to be, especially after being told that even with treatment his life expectancy in 2020 was one year.  

    It all started when we watched the Netflix documentary, Fantastic Fungi, which was really eye opening, when it came to having greater understanding on the benefits of Fungi.

    Alongside this, we of course do our Crystal therapy; again, I suppose, it is something that you may need to believe for it to seem to work, but, we believe it has worked for us. 

    Every night we give thanks, it takes just a few minutes for us to offer out love and strength to others who are in a tougher position than we are, and to give thanks for another day, more time, or whatever else comes to mind.  

    I really can't imagine how many of us would get by on a day to day basis if it was not for forum's like this, it is because of all the individual people on here, who come together and share their experiences that we are able to gleam some hope for ourselves. 

    You are all Wonderful people and I too am grateful for your presence here. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!