My most excellent friend has been diagnosed with Hodgkins Lymphoma. She has a wonderful supportive family but they don't live locally. She is going to be having fortnightly chemo and I would like some advice and practical tips about helping her out after each course, she may be staying with me for a few days after each session, but also ideas about activities and getting out of the house as she's been told to avoid crowds. Many thanks.
Hi Pippin66 and welcome to the Online Community, although I am sorry to see you finding us.
I am Mike Thehighlander and help out on our blood cancer forums. Your post was highlighted to me by one of my Community friends, so I am here to help direct you to some support areas.
First, can I say well done in being available to help her out, this is the time when she finds out who are friends are and she will need support through this time.
You also need to understand that blood cancers like Hodgkins Lymphoma (HL) is very treatable, yes, the treatments can be hard work but on the whole very effective. Also understand that blood cancers are not like any other 'solid' tumour cancer, you can't actually 'cut it out'. So the blood stream and the Lymphatic system has to be 'cleaned out' and this is normally done using rather strong chemo.
I was diagnosed with Non Hodgkin's Lymphoma in 1999 but on the whole Lymphoma treatment follows the same basic rhythm - yes different types of chemo but the same process.
I could give you lots of information, but I think the best way to get help and an idea as to what she will go through and what you can do to help her is go and join our dedicated Hodgkin lymphoma Forum.
This is the place where you will connect with people who understand the journey you and your friend are on. You can ask the folks questions about treatments and what to expect and what to do during the months ahead.
Follow the link above and join the group by hitting the ‘Join the Group’ tab just under the main group name and it is worth indicating how you want to receive email notifications when someone answers your posts.
Go to the 'Start a Discussion' tab just under the main group name and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.
You and your friend may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
Our Online Information and Support Section is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
I will keep an eye open for you ((hugs))
Hi Pippin66, lovely to know that your supporting your friend. I haven’t had a friend in the same position as you, as the good friend I was helping was bedridden so my help came in the form of chatting and bringing her a cup of costa coffee as she had never had one. I looked into the Macmillan section of practical tips to see if there was anything that might help you (the link is below for you to click on)
I’m not sure it had exactly what your asking for, but a question in the forum the highlander suggests might bring forward some personal experience for you.
I am undergoing treatment by iv for metastatic melanoma at the moment every 3 weeks since June 2018, it’s given like chemo but the treatment is perhaps shorter and has less side effects but I do feel tired for a few days after each infusion. So from my perspective (and you don’t have to do the same but it might give you ideas) here’s what me and my husband do.
1) I don’t want to remember treatment day just for the treatment so we arrange a trip to a National Trust property near by if we can, it’s not crowded in the gardens but if I think the restaurant will be crowded I take sandwiches, and I have one of those little bottles of hand sanitizers in my handbag. I also keep forgetting to put a fold up chair in the boot as some of the properties have big grassy car parks where I’ve seen people putting up chairs near their car. You might have a favourite place that is in a local park that’s just as good as NT place and has a toilet available.
2) I’m nearly always tired after treatment and for a few days to push myself so it’s become a habit or a treat now that my husband makes all the meals and every cup of tea for 3 days at my treatment time. He also gets to do the grocery shopping on his own if it’s needed, but we’ve usually got stuff in ahead of time.
3) Knowing that fatigue can be helped by exercise I try and have a walk each day but my 10,000 steps in a good week can become just 500 for a few days after treatment, if I push myself it seems to take longer for me to get back up to 10k, so I just let my body lead me, and my husband suggests and asks and we just go with the flow. After my slow down period I often appreciate him motivating me to get back to normal. We have a favourite route which takes an hour to walk where we can have lunch and do the hours walk back, but in my less active week I wouldn’t attempt that and have a circular route that’s no more than 20 mins from the car and lots of benches along the route. It was my safety blanket route. We do get out everyday as we both play pokemonGo and don’t want to break a 7 day streak of walking past a Pokémon Stop, or at least driving past one! I don’t do crowds anyway and prefer going to quiet places or places when they are quieter.
I hope some of this helps, I’m sure you will work something out that you can help with.
Thank you so much for your very kind and supportive welcome. I really appreciate the guidance you have given me here and will certainly follow up on it. This is going to be a hard journey for all who love my dear friend and its nice to know that there are people out there who understand. ((hugs back))
I can't tell you how much it means to get such a helpful and detailed response. I appreciate it so much. I have never had to 'deal with' cancer before and my poor mate lives alone. She is sooo strong and pragmatic, I just want to do what I can. I have felt so helpless and wish I could take this burden away from her, but know that this is impossible. You have given me so many practical ideas that I can use...I think I went into brain freeze and just couldn't think of things to do with her when she's feeling up to it. I am hoping that she will stay with us for the days she feels worst and I understand that her tastes may change, so I am researching what meals to prepare for her...my great grandmothers chicken soup recipe may be coming out!! Will things like smell be affected? Stupid ideas like...should I put a scented candle in her room??? I know I'm fixating on silly details, I think it's avoidance tactics! I'm sure everyone's reaction is different and she'll certainly tell me if something irritates her, or what she fancies to eat...it's just funny how I'm latched onto petty details. What a journey she is embarking on, I just hope I can make it a bit easier for her.
Thanks again so much, sorry for rambling on xx
Hi Pippin66, Oh my gosh I had to smile at the scented candle idea. You have said that your friend is very strong and pragmatic, which brought to mind a good friend of mine who’s sister has pancreatic cancer and lives alone, she is very insistent that she wants no help and does not want to rely on others and wants to feel strong doing it on her own, her sister looks on wanting to help but also has to respect her boundaries, but supports from the sidelines with supportive messages and visits and is a distraction from cancer rather than helping her cope with it.
You can see that I have no qualms about my husband helping me, and then getting back to normal, and I have some friends who I can talk to and others who I don’t open up to about cancer as ...well each friend has strengths and weaknesses.
Your chicken soup recipe, I can smell it all ready, I didn’t have any change of taste but as diarrhoea is often a side effect of my Immunotherapy I avoided anything spicy, that said I have been away this last week and seem to have had mild curries on the trot (no pun or adverse effects) for 3 days. I think ask you friend what they like to eat and don’t worry if they are eating less than normal. Be led by them as to how much or little help you give, but keep the offers coming if you can and don’t be off put by a few rejections. People are all different I have a friend who send me a text message every treatment day as a moral boost and I love that, much better than my brother not acknowledging anything that I’m going through.
I think the cancer group will have both patients and friends and family in and so a conversation in there might bring some interesting and supportive feedback on your ideas plus some we could not think of.
So sorry to hear about your friends diagnosis, just awful news when you get it, but with the treatment available and as you have said such a strong supportive family and group of friends, I'm sure she will beat the beast!
I was diagnosed with stage 2 hodgkin's lymphoma at 26 years old. I completed my 4th session yesterday and am awaiting a PET to see how I am responding.
Just a few tips for your friend that have helped me so far...
Typically I feel fine one day after treatment, however its the second day my side effects start to begin. Luckily I only have the side effects for roughly 4 days until I feel pretty much back to normal again.
I usually get quite a sore mouth from the treatment, if she she gets this, don't suffer in silence! Ring the triage team and they can prescribe her with various mouth washes, which really do the trick! Actually... Ring the triage team for any problems you have! Don't feel silly, just ring them.. They will be happy to help :)
Probally the worst side effect I have exsprienced (luckily I haven't had this since the 2nd treatment... Touch wood) was overwhelming jaw ache. Parcetomol did absolutely nothing to help, so again I rang the triage team and was prescribed codine tablets. These really did do the trick for me, and within a day the pain had subsided completely. However the codine gave me very bad constipation, again the triage team prescribed laxido and senna which sorted the problem!
Leading to constipation make sure she drinks plenty of water, I aim for atleast 2 to 2.5 litres per day. Even more so stick to this post treatment, you need to flush the drugs out your system.. Her kidneys will thank you for this
Roughly for 4 days after treatment I get this mettalic taste in my mouth, kind of feels like I'm rolling a 2p coin round my mouth all day... Not nice. This can be tricky as I feel it puts me off alot of food I'd usually love to eat. But having strong tasting flavoured foods like homemade curries did slightly overpower the mettalic taste! Also pineapple, lots of pineapple! Which is good for digestion and the constipation.
If she suffers with any acid reflux due to the chemo drugs, ask to be prescribed lanzoprozole 30mg, which will sort it completely.
If she does want a meal out I would really avoid takeaways, 100%. Stick to restaurants she's been to multiple times where knows the food is cooked well and she's never had any problems there previously. I wouldnt try anywhere new at all. I stick to thing like a steak cooked well or like a burger cooked well. No salad, and definitely no sea food!
Last but not least tell her to listen to her body, if she's tired.. Have a nap and visa versa I go for a 20 minute walk every day, this really does help with the fatigue for me. Try both.. See what works best for her. Everyone's different. On her good days make sure you do something she enjoys, she hasn't got to be stuck in the house 24/7, it's so important to try and have some type of normality and there's no reason she still can't :) Cancer is a word, not a sentence!
Hope all this will help and I haven't babbled on too much, there's probally alot more in the back of my head... So please don't hesitate to message me, and I will help as much as I can. I struggled so much at the very start and talking to complete strangers, really did help. This forum is such a good resource, so use it to it's upmost.
All the best.
Thank you so much for your kind words; I really will listen to what she wants and be led by her. At the moment she likes melon and cool flavours as she has had mouth pain, I think spices are best avoided at the moment at least. I try to call her every day, but didn't want to hassle her...I'll continue dropping her a quick message...as you say, its better than ignoring her. Thanks again xx
I can't thank you enough for your reply. It has been incredibly useful. I have read about, and my friend has already experienced, pain in her mouth (although lollies helped) but I had never heard anything about jaw pain so I have forewarned her. Also the pineapple tip...melon was helping but pineapple seems to have a dual impact so to speak. Your tips have been very practical and I certainly feel a little more confident in helping now. She's had one dose of chemo...and apart from uncontrollable temperature fluctuations, she still feels well and 'normal', however we're all aware that chemo has a cumulative effect, so she'll probably feel progressively worse as treatment progresses. It does seem brutal, but i guess that is what is necessary to beat this particular Beast. Again thank you, I couldn't have hoped for a nicer or more helpful reply. Good luck on your journey :0)
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