Hi I am new to the site, and can’t believe I am actually on a here to discuss cancer!
my daughter is 22 and has just been diagnosed with Hodgkin lymphoma. She began to feel unwell approximately at the start of March this year. She had a bad cold in February which left her feeling totally wiped out and thought her body was just getting over that. It started with bad night sweats, and extreme tiredness and hives.She then had a pain on her right lower side of pelvic area, which became worse when she moved about or done any physical movement. So at this point she thought her duvet was making her too hot and perhaps may be a cyst on her are you Ovary. She plodded on like you do, then the lockdown came!! So getting a doctors appointment was so so difficult. She was given a phone appointment and after her consultation she was sent for blood tests. Her bloods came back with high white cells( inflammation) and a few other white cells abnormal And low on iron. She was told by her doctor that she has an infection somewhere in her body, and at this stage without an examination was hard to diagnose anything. She was given a general antibiotic for maybe an infection in her Pelvis or womb area. Obviously that didn’t work or help anything. Her symptoms became worse, she started getting cold chills, and pain throughout her arms and legs with an odd sensation feeling. Her appetite went too . Then in April she had a lump come up on right hand side of neck with swelling in the area too. It was long and didn’t hurt and was probably the size of my baby finger! So she was given more antibiotics! She has now had 5 blood tests, 3 lots of antibiotics and about 10 phone calls. Because of this lump it’s only now the doctor sent her to the hospital for a biopsy. Her night sweats have stopped and her aching has improved and her lump has gone down slightly. She is now waking up about 5 in the morning with backache, so bad that only pain killers help it. She has a pet scan next Friday, which I don’t think they will give her the results of that day?? ( anyone know)? everything takes so long especially at the moment!!! I am so worried that this has spread to her liver/ bowel or somewhere in that area? Or did it start in that area? Or did it start in her neck?? She has slight tender area under arms and ground but nothing too bad, her spleen area is started to become slightly tender too.
so sorry for this long story, I am rubbish at putting things down in writing.. ANY HELP / comments would be much appreciated. I am so scared how far this may have spread.. thank you
Hello and welcome to a site nobody wants to join!
really sorry to see you here and to read about your daughters story, sorry she is in pain.
the PET scan will reveal any active areas of HL and no, you’re right in that you’ll need to wait till the specialists have reviewed the scan and decided on her treatment schedule.
but please don’t panic overly about spread, HL is a blood cancer so it will spread around the body, since blood circulates. It’s not going to be easy, the treatment for any blood cancer is chemotherapy, possibly followed by radiotherapy. But it IS so-able, and the various regimes being used now get folk into remission in the vast number of cases.
Our lass’ HL was obstinate (like her, she says) but after more treatments she is in a lasting remission.
Get your daughter to start keeping a sort of journal listing how she feels, any questions she has, what worries her, and what she experiences with/after any intervention. It can be very useful. And get her used to drinking plenty of water, it will be needed with chemo!
keep posting,
sending you both hugs xxx
Moomy
Oh, and do fill in a bit of info into your profile, it doesn’t have to be a lot but it can be very helpful for folk answering you rather than them having to do a search.
to do it, click on your user name, then onto ‘edit my profile’, type away and then click on ‘save’ when finished. You can read any of our profiles by clicking on our user names, which is why it can be so helpful. I’ve been here some time, and have daughters and my own cancer on mine!
Hugs xxx
Moomy
I know! But for her sake you have to be positive; but also be her advocate if she needs it too!
sadly everything takes time, but it does even if you’re a private patient, it’s not just the NHS dragging its feet! And of course with the virus everything seems much more difficult. You will all need to take good care of yourselves of course.
Hugs xxx
Moomy
Hi I know the feelings of disbelief you are having, nobody can prepare themselves for the devastating news that your child no matter what age has cancer, you just want to take away their pain , you think to yourselves why can it not be me instead of her . My daughter was diagnosed in March with Hodgkin’s lymphoma stage 4b and tomorrow will be half way through her treatment she has been coping with it Her treatment on the whole so well I’m really proud of her she amazes me sometimes.
The people on this site have really helped me when I need reassurance so keep this line of communication open when you are feeling anxious about the journey that you and your family are taking. It’s very true what moomy said you have to try your hardest to stay positive for you and her . I have found it very hard to step back sometimes and let her have time to take stock but am learning every day .
Just be there for her that’s all that’s needed.
Absolutely right! I actually voiced the ‘why couldn’t it be me instead’ to her chemo specialist nurse when she was out of the room, in the first ever session, she comforted me but then said that at her age they were pretty sure to get her to remission (how little she knew!) but at mine it might be much more difficult.
Your team will be a great source of information and help, and if you’re in doubt about anything, do ask them, they have seen it all! And if there are any problems with sickness/whatever -tmi coming now, constipation (the usual chemo regime really can cause this!) and the water will help. Ginger can often help lots too, in any form.
Crying into my pillow at night was a regular, in fact we all did at different times, as a family of 4 it brought us even closer together I think. We seldom go long even now without texting, FaceTiming or phoning for a chat, even though they both have partners and lives away.
Hugs xxx
Moomy
Hi there
I am sorry to hear about your daughter, it’s a very difficult time for us all. I’m pleased to hear she is doing ok with her treatment, it makes me feel a bit more positive about it all. Was it this March? She was diagnosed. And has it been difficult with the the lockdown and not being allowed in the hospital with her for treatments?
thank you for Your advice and kind words, I will take everything on board and try to stay positive for my daughter. I find I can hold it together when she’s with me, but as soon as she goes back to her house I tend to start feeling really low and empty. But I guess I should expect to feel a bit anxious and afraid . It’s reassuring to know I can come on here and talk to people and feel a bit better.
so a big thank you
Hi
yes it was this March she was diagnosed, so yes a week before lockdown. So I could not go to any of her appointments or her chemo and still can’t . She moved out only 6 months ago into her own place with her boyfriend She’s 25 . so he has had to take on the role of caring for her as me or my husband was not allowed to see her because of the virus.
Thank goodness the restrictions are being lifted a bit now so I have been able to see her at a safe distance.
Sending you virtual hugs for you and your daughter.
x
Hello again
Thank you for your reply. It must have been so difficult for you, not seeing her, how did your daughter cope with the treatments on her own in the hospital? I am not sure where you are? But we are in Sevenoaks kent. Your daughter was seen quickly for treatment it seems? Do you know how soon it is that they start the treatments?
my daughter lives with her boyfriend too, they moved into their new place in may this year, they moved out of their old flat in April, when the virus was at its worse and my daughter was feeling like poo. So it’s been a hectic time for her.
how is your daughter doing? Is her boyfriend supporting her well?
It’s lovely to hear from you
julie x
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