My daughter

Hi again Leasha and we’ll done navigating across to this corner of the community.

As I said in your first post I don’t have Hodgkin's Lymphoma (HL) but have been on my Lymphoma journey for over 24 years.

My type of Lymphoma is rare and is classed as incurable but although I have had various treatments over the years I am turning 68 this Nov and living a great life…… and you can look forward with a great deal of confidence that your daughter will come through this and be able to move on with life.

If we were talking around your daughter having many of the other types of cancers..... we would most likely be talking with a different view of the future..... this is how treatable Lymphoma is....... even when someone(like myself) gets a high staging.....  Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes. Staging in Lymphomas identifies 1) Where the Lymphoma is presenting in the body (it can be anywhere) 2) What is the best treatment approach and best treatment type for your presentation and 3) How long your treatment needs to be.

Some of the treatments used to treat HL are full on.... but they have to be to effectively evict this uninvited squatter from her body.

The treatment she will be having are most likely done as a one - day - outpatient, the day may be long but she gets home to her own bed…… my main chemo was back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ and it was ok... not great but do-able.

As for side-effects, everyone is so different..... Nausea may be a challenge, but remember she must not to suffer in silence as there are lots of tools available - but her team need to know how she is getting on as at times it is trial and error to get the right one. I was never sick during my 750+ hrs of main chemo.

Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less she does the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs. But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that she may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest……. then the body recovers in time for your next cycle….. but the more chemo she has the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps her well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

It’s important for her to get her prepared for her treatment so you may want to have a look through this link Top Tips for the day of your Chemotherapy

Lots of info for you to look through…… I am sure you will have questions so do get back to me and I will help you out as best as I can.

I am 41 and also have Hodgkin’s lymphoma. I have just started my third cycle of chemotherapy. I hope your daughter’s treatment is starting soon or already began. Getting my initial diagnosis and that time waiting for biopsy results and treatment to start was probably the hardest. Like your daughter I continued to exercise and go to work during this time and I think this helped me go into my treatment with a positive mindset.
You will read about lots of side effects with the chemotherapy and although each person is different I wanted to share with you that my experience so far has not been as bad as I had expected. It’s scary at first and exhausting but I have not felt poorly with it, just tiredness. I had expected to be feeling constantly poorly every day but I have still managed to spend time with my two young boys in between treatments, going out for picnics/parks/short walks. The doctors have told me that Hodgeson’s lymphoma is very curable so I am keeping that in mind throughout me treatment and keeping positive. I hope your daughter is too. Please feel free to reply with any questions. I wish your daughter lots of positive thoughts and good luck in her road to recovery. 

Hi Here to help and I see that this is your first post so welcome to this corner of the community.

Great to hear your story so far and to hear that your treatment is going well.

Lets look for this to continue and as with many….. you will be looking back at this life episode through fuzzy memories. 

Always around to help out.

Thanks for your response. You’re right the whole experience, especially initially getting my diagnosis and waiting for biopsy results is a bit of a blur. I am trying to document my cancer journey through photos and a bit of a diary to myself. I am hoping once I get the all clear I will look back it it to remind myself how brave and strong I can be!! 

Hi again...... we all develop our own strategies to navigate the journey.

I never did see myself as being strong and brave....... the journey had to be done - no option. So I would say I..... actually all my family (it's not just you going through this) were determined and focused........

I would not let my cancer journey define me and my family........ as a family we define how we live with our uninvited guest........ remember that my type of Lymphoma is Incurable so could relapse again as it has bone many times over my 24 years....... but that is not in our minds.... we live in the now not in the 'what if's?'

You may want to consider putting some information into your profile as this helps others when replying to you and when folks are looking for someone on a similar journey…. and you don't have to keep repeating yourself. You can find your ‘Profile’ section by clicking on your username and as always you can click on any member to see their story….. although My cancer story is rather long.

Hello thank you for sharing your experience, it is really helpful to know we are not going through this alone. E is really positive, some days are worse than others with the tiredness and fatigue but she continues to exercise and do some work on the days she can.  She has shaved her hair off as she said she needed to be in control she couldn’t wait for it to start falling out ,  she is coping well though and not making a big deal of it. She will be having her 4th treatment this week so sounds at the same stage as you. How many sessions do you have to have? I wish you well and if you would like to continue sharing your experiences I would be very happy to share ours. 

I did the same and shaved my hair. It started coming out and I found that process harder. I felt much better once it was shaved. It has its advantages… no blow drying and straightening it on a morning!! Got to take the positives in this horrible situation!! The docs are hoping I will only need 4 cycles of chemo. I had a pet scan at the weekend to see how things are progressing so hoping for good news. Yes it would be lovely to hear how your daughter is doing too. It helps to hear from people in similar situations. 

That is brilliant that the doctors are  thinking you only have to have 4 sessions. My daughter sadly has to have 22 sessions, it breaks my heart!

Mine was classed a stage 4 so they opted for a more intense chemo over a shorter time. Luckily I have not suffered from side effects other than tiredness though. I hope your daughter is managing without too many. 22 cycles will be hard but she sounds like she is being very brave and strong. I think it’s probably just as hard on family. My mam has struggled with it too. 

Hi again Leasha those of us who have been on the receiving end of Lymphoma treatments don't fully understand the emotional challenges faced by the family members looking on.

Going through Lymphoma treatment can be rather intense and often rather different from other cancer types..... you may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment........ and more specifically their regular Support Platforms with a few groups specifically for cares family and friends..... I highly recommend these groups as there is nothing better than talking with other who are walking the same support journey.